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Dermatitis Herpetiformis and other “Atypical” Symptoms of Gluten Sensitivity

As Celiac Disease Awareness Month comes to a close, I thought I would share more of my personal story.  I have been meaning to do this for a long time but I will be honest, taking myself back in time is emotionally difficult for me.  I can’t tell you how many times I’ve tried to write this post, only to find myself needing to walk away because of the ever-present heartbreak over what never had to be, if only I had received a proper diagnosis when I first began to exhibit the symptoms of gluten sensitivity as a child…and started eating the right foods.

What finally prompted me to muster the courage to relive my past were a few dozen emails I’ve recently received from readers asking me about dermatitis herpetiformis (also known as Duhring Disease, Brocq-Duhring Disease or Dermatitis Multiformis), so I thought I would share my story with this itchy, stinging, blistering rash, as well as my other “atypical” signs and symptoms of gluten intolerance.  Head’s up: this is a long post.

When I say the word atypical, I don’t mean to suggest that these are uncommon symptoms, in fact, I suspect that they may be more common than the classic gastrointestinal symptoms that most people think of when it comes to celiac disease and non-celiac gluten sensitivity.

I also believe that the “atypical” symptoms are one of the major reasons why 95% of the estimated 3 million Americans living with celiac disease are undiagnosed.  Add to that, the fact that you can go into any medical specialist’s office in this country and no doubt find patients whose underlying health problem is gluten, whether in the form of celiac disease or non-celiac gluten sensitivity.  If doctors would stop being so eager to treat any of the 300+ signs, symptoms and conditions caused by gluten sensitivity (often with dangerous medications that will only perpetuate the problem), and take the time to practice medicine by seeking out the underlying root cause of the symptom, what a different world it could be!  I digress.

As I’ve mentioned many times before, my celiac diagnosis in 2005 came as a complete and utter shock to me.  I had not been actively seeking a diagnosis that would explain chronic and severe gastrointestinal distress, because I did not have any.

I was not looking for the cause of chronic iron deficiency anemia or any other malabsorption issues commonly linked to undiagnosed celiac disease, because I did not have any (that I know of).

Outside of the fact that I had just put on 80 pounds after my thyroid was ablated due to Graves’ disease, I felt like my “normal” sick, tired and grumpy self! :-D

The tired and grumpy part of my personality could easily have been explained by the fact that I had just had a baby (Sam), but the truth of the matter was that I had long been grumpy.  From a very early age, I had behavior problems and I was downright aggressive and mean at times.  I won’t bore you with the details (many of them are not pretty) but needless to say, my teenage years were emotionally and physically volatile.

You see, I never had a “dark” heart, in fact, it was just the opposite.  I was extremely soft-hearted but I was prone to emotional and physical outbursts that often left my mother accusing me of being on drugs (nope).  After each of my many “episodes,” I would often go to my room and cry for hours, berating myself for my deplorable behavior, pondering what was wrong with me (my mom’s favorite phrase to me growing up was, “What on earth is wrong with you, we didn’t raise you to be this way!”).  She was right, I did not grow up in a broken home, there wasn’t any physical abuse, and I didn’t take drugs…my behavior really didn’t make much sense at the time.

The only thing I could ever contribute my behavior problems to (other than simply being a “bad seed”) was the fact that I had a lot of “weird” health problems as a child, all of which had an extremely negative impact on my self-esteem, and thus, I thought, contributed to my massive mood swings.

I was born with a congenital birth defect called a branchial cleft cyst and had my first (of 12) major surgeries on my neck when I was two years old.  Any of these surgeries could have “pulled the trigger” for my celiac disease.

From Medscape:

Branchial cleft cysts are congenital epithelial cysts, which arise on the lateral part of the neck from a failure of obliteration of the second branchial cleft in embryonic development.

Phylogenetically, the branchial apparatus is related to gill slits. In fish and amphibians, these structures are responsible for the development of the gills, hence the name branchial (branchia is Greek for gills).

Basically, I spent the first decade of my life believing I was part mermaid. ;-)

  • I also suffered from severe eczema and my parents had to apply ointment and tape sandwich baggies to my feet (to keep the medication on) every night for nearly 14 years.  It was utterly humiliating and I was teased mercilessly for the scar on my neck and my inflamed, red and cracking feet.  And those were just the beginning of my peculiar health problems (I highly recommend buying a copy of the book, Eczema! Cure It! by Rodney Ford, MD, FRACP, it’s also available as an e-book on Smashwords.com).
  • I always had canker sores (aphthous ulcers) as a kid, painful mouth ulcers that you usually discover after drinking a glass of o.j. and your mouth lights up on fire.  I remember my dad apologizing to me for passing on the family “canker sore gene” as he pulled out his home remedy of alum powder to dab on my sore (What the @%*! dad, that HURT!!!!). ;-)
  • I suffered from recurring muscle cramping in my calves (or as I’ve always called them, Charley Horses).  I can vividly recall waking up in the middle of the night after my calf muscle would seize up, screaming in agony until my dad would come running in, and grab my foot to pull my leg straight. My calf would stay sore for days afterward and my mom pumped me full of bananas (assuming a potassium deficiency caused the muscle cramps).
  • When I was in the 2nd grade, my mom received a call from my teacher who was distressed over my daily interruptions in class.  Apparently, I was so skilled at daydreaming that I would break out into song…during the middle of class (a Glee-girl in the making?)!  I have always struggled with focus issues and reading a book was a never ending battle, just to get past one page.  I would forget what I had read, mid-sentence, and so I would have to read the same lines over and over and over again.  It amazes me to this day that I was able to obtain a college degree, but one positive side effect from all my health issues as a kid was a stubborn refusal to ever give up.  When I was 34, I was finally diagnosed with Adult ADD.  To learn more about gluten’s connection to ADD/ADHD, Dr. Vikki Petersen wrote an article called Gluten Sensitivity Causing ADHD and Schizophrenia (sharing information from Dr. Peter Green).
  • When I was 10, I had my first appointment with an allergist, who discovered I had severe environmental allergies (including 26 varieties of grass) as well as chronic sinusitis.  I was promptly placed on allergy shots and the first of dozens of prescriptions for oral and nasal steroids and antibiotics.  I would take this cocktail of gut-damaging drugs 4-5 times a year for the next 27 years, until my recent sinus surgery in February, 2011.  (Interesting note: I was diagnosed with an IgE allergy to corn in the fall of 2010 and the few times I’ve been exposed to corn since my sinus surgery, my reaction was severe sinus congestion!).
  • When I was 12, I started having my period, which was extremely heavy and horribly painful, to the point that I would miss 2 – 4 days of school a month…lying in bed, attached to a heating pad.  I was diagnosed with Dysmenorrhea and placed on high doses of gut-damaging NSAIDS to manage the pain.
  • When I was 14, I began to notice what looked like obnoxious scratch marks on my knees, which would come and go over the next 20 years.  (I will get back to this in a minute).
  • When I was 15, I had my tonsils removed as part of my ongoing battle with the branchial cleft cyst and chronic upper respiratory tract infections.  One week later, I hemorrhaged and the surgeon had to cauterize my throat 6 times before the bleeding would stop (perhaps the result of a Vitamin K deficiency?).  I can still smell the aroma of my burning flesh.  I had lost so much blood that it was recommended I receive a blood transfusion, but this was 1989 and the AIDS epidemic struck fear in the heart of many, and my mom declined the transfusion.  Instead, I was taken by wheelchair to the car because I was too weak to walk.  I spent that entire summer inside, slowly watching my ghost-white complexion return to a normal color.
  • When I was 16, my parents allowed me to go on a winter vacation to Florida with some of my high school girlfriends.  After one day in the ocean, I broke out in a rash that consisted of flat plaque-like scales all over my torso, arms and scalp, I looked like a spotted leopard!  Can you imagine how it felt to be a 16 year old girl on the beach with her bikini-wearing friends who were flirting with all the cute boys and you’re sitting on the sidelines in jeans and a turtleneck?  You may have well tattooed a large Capital “L” on my forehead!  After returning home, I was diagnosed with psoriasis and spent a year in UVB light therapy before going into spontaneous remission.
  • When I was 18, I began waking up in the middle of the night with excruciating pain in my head, it was so intense that I temporarily lost sight in one of my eyes.  After having an MRI, the doctor diagnosed me with cluster headaches and I was prescribed powerful NSAIDS for the pain.
  • When I was 25, I moved to New Mexico and my environmental allergies worsened so I began seeing a new allergist, who unbeknownst to me, decided to test me for a few food allergies.  Imagine my surprise last year (after obtaining a copy of my medical records) when I discovered that I had tested highly positive for a wheat allergy (IgE) 11 years earlier…and my doctor NEVER TOLD ME!!  Six years later, I would be diagnosed with celiac disease after losing my thyroid.  Want some friendly advice?  ALWAYS ask for a copy of your lab tests and medical records, especially if you see multiple medical specialists.  Celiac Disease is systemic and can be difficult to diagnose.  I saw multiple specialists growing up, an allergist, dermatologist, neurologist, phsychologist, otolaryngologist (ear, nose and throat surgeon), gynecologist, and an endocrinologist…but never a gastroenterologist).
  • When I was 29 and pregnant with my first son, I began bleeding in my 6 month of pregnancy and was placed on semi-bed rest for the duration of my pregnancy.  Knowing what I know today about celiac disease and fertility problems, I am very lucky that Sam is alive today.
  • I was 31 when I was finally diagnosed with celiac disease (via the anti-gliadin blood test, after complications arose from my thyroid ablation).  I unhappily went on the gluten free diet (after 4 “farewell tours” of all my favorite restaurants) for 6 months and once my TSH levels normalized…and my first gluten free Thanksgiving rolled around…I fell off the wagon and I cheated for the first time.  I didn’t know much about celiac disease at the time (who does when they’re first diagnosed?) and I fully expected to pay some serious physical consequences for eating a gluten-filled meal that Thanksgiving, but much to my surprise, nothing happened.  No bloating, no tummy ache, no diarrhea, no nothing.  And I foolishly planted the seed of doubt in my head about my diagnosis (I hadn’t had the currently recommended blood tests for celiac disease, nor had I had the biopsy yet).

The next 3 years are a blur.  I struggled with my celiac diagnosis more than any other medical diagnosis I had ever received.  I was angry, I felt sorry for myself, I was depressed, I was lonely and I was very much in denial.  I did not want celiac disease, but more than that, I did NOT want to go on the gluten free diet!  I lost everything I had ever known that fateful day in April of 2005, I lost friends who quit asking me to go out to dinner, I lost family who didn’t understand what was happening to me (and they definitely didn’t understand my new “complicated” diet), but most of all, I lost myself.  I lost my memories that were inevitably surrounded by food gluten, I would never again cook Thanksgiving dinner or Christmas Eve Fritters with my father, something I had done since I was a small child.  I would never again eat one of my favorite meals cooked by my mother (my mom has had a more difficult time than me when it comes to the GF diet).  In a sense, it was as if I had become an orphan, even though my parents were still very much alive.  I mourned for what I had lost (this is no longer the case), so much so, that my new best friends had become anti-depressants and “Ms. Cabernet Sauvignon.”  Unfortunately, “Ms. Cab” was a one-sided friendship because she was stabbing me in the back by further wrecking my intestinal lining!  For more information on alcohol’s effects on increased intestinal permeability, click here.

In 2007, my beloved Uncle, who was like a second father to me, died of non-Hodgkins lymphoma, just 9 days after he was diagnosed.  By this time, I had become slightly more knowledgeable about celiac disease and I knew NHL was one of the cancers that celiacs are at an increased risk for.  I remember begging them to test my Uncle for celiac and the response was something akin to, “stupid girl, we are trying to save this man’s life and you’re worried about food?”

They never tested my Uncle, so I will never know, but I did find out that he suffered from terrible asthma as a child (to the point he had to leave his family in Minnesota as a child to live with his grandparents in Arizona, thinking the dry air would ease the asthma).  I also discovered he was allergic to dairy as a kid and he had an insatiable craving for bread in his adult years.  He even went to his doctor about 10 years prior to his death, complaining of severe bloating after he ate.  His doctor laughed it off and said he just had “tight belt syndrome,” and to unbuckle his britches after he ate.  He was dead 10 years later at the age 69, leaving behind all those who loved him so dearly.

Because of my Uncle Terry, bloating is a symptom that I am very passionate about, and I urge you to read a guest post “The Beer that Saved My Belly,” by Dr. Delise Dickard on my dear friend Shirley Braden’s blog, Gluten Free Easily.

One would think that after witnessing firsthand how I could end up if I didn’t begin taking the gluten free diet seriously, I would have immediately changed my ways after my uncle’s death.  Alas, that was not the case.

Ironically, it was on the drive to Wisconsin for my Uncle’s memorial several months later that I began my final cheating spree.  I think I rationalized it because the last thing I wanted to ask my Aunt for was a gluten free meal at the reception, after we had just spread her husband’s ashes in his favorite fishing lake.  I would eat gluten every day, for 3 meals a day (no ill effects in the process) for 7 WEEKS before my day of reckoning would finally come.

I woke up one morning in August of 2008, covered in intensely stinging, itchy blisters all over my scalp, torso, buttocks, and legs.  The itch was so severe that I created a bruise the size of a dinner plate (I had my husband measure it!) on my back from trying to relieve the pain on one of my handlebar doorknobs.  As bad as the pain was, it was nothing compared to what I experienced emotionally when I looked in the mirror and saw what I could only describe as a “leper” looking back at me. (Funny story, after my doctor handed me a prescription for Dapsone, a powerful drug commonly used to treat dermatitis herpetiformis, I Googled it and discovered that it’s also used to treat leprosy!  I never filled the prescription). :-D

I fell to the floor of my master bathroom, naked in every sense of the word and curled up in the fetal position, begging God to make it go away.  I knew what it was (even though I had yet to get a skin biopsy), and somewhere deep within me arose a voice I would never recognize as my own, “I. GET. IT!  I will never eat gluten again!  If gluten can do THIS to the outside of my body…what the $@!&, has it done to me internally?!”

Remember those obnoxious scrape marks I mentioned (way up) above, that I had begun getting on my knees when I was 14?  Well, those “scrape marks” were the  leftover remnants of dermatitis herpetiformis (after I had ruptured the blister from scratching it).  It was a fairly mild case up until my final outbreak, in fact, it was a seasonal rash for many years, only showing up in the summer months, my childhood dermatologist had chalked it up to my grass allergy…and even the humidity!  (Interesting note about my childhood dermatologist, Dr. Frank Yoder.  He was one of the doctors who discovered that the dangerous drug Accutane was effective for acne (my dad and two sisters took Accutane for years), how ironic that it was recently discovered by The University of Chicago Celiac Disease Center that Accutane can be a trigger for celiac disease in genetically susceptible patients!).

The following is from The Gluten Intolerance Group of North America (bold emphasis added)

Dermatitis herpetiformis (DH) is a chronic disease of the skin marked by groups of watery, itchy blisters that may resemble pimples or blisters.  The ingestion of gluten (from wheat, rye, and barley) triggers an immune system response that deposits a substance, lgA (Immunoglobulin A), under the top layer of skin.  IgA is present in affected as well as unaffected skin.  DH is a hereditary autoimmune gluten intolerance disease linked with celiac disease.  If you have DH, you always have gluten intolerance. With DH, the primary lesion is on the skin, whereas with celiac disease the lesions are in the small intestine.  The degree of damage to the small intestine is often less severe or more patchy than those with celiac disease.  Both diseases are permanent and symptoms/damage will occur after consuming gluten. To continue reading, click here

In much the same way as other forms of gluten sensitivity, dermatitis herpetiformis can be peculiar.  One might think that if you have this rash and are eating a gluten-filled diet, then the rash would be ever present, but alas, that is not always the case.

I suppose the reason my dermatologist failed to properly diagnose my dermatitis herpetiformis was due to the fact that the tell tale fluid-filled blisters of DH (see below photo) never hung around long enough for me to get in to see him (a 2- 3 month wait to see the doctor was not the least bit helpful in this regard!).

Photo Credit

Instead, what remained were dark red/purple colored scrape marks:

I took the above photo of my knee in 2007, 2 years after my initial celiac diagnosis and 1 year before I finally quit cheating on the gluten free diet.

The following is a great video of Dr. Wendy Levinbook, MD discussing Dermatitis Herpetiformis:.

It wasn’t until my massive breakout in 2008, that I was finally able to get a skin biopsy that proved DH once and for all (I had already had 2 positive intestinal biopsies for celiac disease by that point).

Three months later, my then 5 year old son was diagnosed with celiac disease via a blood test, but his biopsy came back negative (I blogged about his conflicting celiac test results here).  As you can see from my lifelong struggles, making the choice to place him on a gluten free diet immediately was a no-brainer.  I may have made many ill-informed choices for myself in the years following my diagnosis, but I would never do that to my child who has his entire life in front of him.

In the end, this decision would become my greatest gift, not only to him, but to my entire family (my husband and youngest son have non-celiac gluten sensitivity).  The gift of good health, phenomenal food and an appreciation for knowing the difference between food, health and real joy.

Physicians: The National Foundation for Celiac Awareness offers several (FREE) accredited continuing education activities for healthcare providers to support the identification, diagnosis, and management of people with celiac disease.  Please take some time to make yourself aware of the most current medical information on celiac disease, you could help stop a patient’s needless suffering, for the often 10 or more years it takes to make a celiac diagnosis. Thank you.

 

I would love to know about your symptoms and conditions related to gluten sensitivity, including how long it took you to get a diagnosis (either by a doctor or through self discovery).

The more we share our stories, the more likely someone else may find the answer they’ve long been looking for.  Please consider sharing your story in a comment to this post (it doesn’t have to be as long as mine, unless you want it to be!).  And please consider sharing the link to this post with those who you think could benefit from reading it. :-D


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Comments

  1. Your story will bless and help many people, Heidi. What a journey you have been on. Thank you for sharing. :) Hugs.

    • Thank you Megan and you're right, it has been one wild journey, but one I am thankful to have traveled nonetheless. I would not trade where I am today for anything for I have finally found my real, healthy and happy self. :-D

  2. Jen says:

    Thanks so much for sharing your story. I have recently self diagnosed myself with gluten sensitivity. Since the birth of my first child, I have been experiencing bloating (to the point it looked like I was pregnant), gas, and constipation. I tried avoiding dairy but my symtoms remained. I tried chewing my food more and eating slower, but no luck. I tried drinking less water, still no luck. Finally, after 5 years of suffering, I was reading a website about going gluten-free, and the person had the exact same symptoms I had. That was it, I decided to try going gluten-free for one week to see if that made a difference.

    After 1 gluten-free day….all of my symptoms were gone! No more bloating, no more constipation! I feel like I have my tummy back. Now I've been gluten-free for almost 2 weeks and I'm not looking back :)

    • Jen,

      YEA!!! You have no idea how happy it makes me to read your story, thank you for sharing it and keep marching forward (and please, never, ever cheat…even small amounts can take your immune system up to 6 months to quit reacting).

      Hugs,

      Heidi

  3. Maggie says:

    Heidi this is an incredible story. Perhaps the most incredible one I have heard. I am so sorry you had to go so far before you could recover and head down the road to health. I'm sending you lots of love and strength. Thank you so much for sharing your story, you have, and will continue to, help so many people. Bless you. xo

    • Maggie.

      It was definitely a long hard road to travel, but outside of the harm I did to my health (ignorance is definitely NOT bliss!), I wouldn't change the emotional journey for anything. I have learned so much about myself, relationships, food and social gatherings over the past 6 years, and I find myself being happier and stronger than I ever thought possible…especially when it comes to my relationship with Mike and my boys, I know first hand how truly precious life is. :0)

      xo,

      Heidi

  4. Deanna Vieira says:

    Although not all of this pertains to me, so much of it does. I'm still in denial though. I was just told a couple of months ago that I should go for a endoscopy to find out if It's a fact that I'm allergic to gluten and dairy…I am Italian, I Love food, and my World just went upside down in October because my Dad passed away. I have had problems with Boils since I was 12.

    When I was a teenager I had very painful periods, many UTI's and yeast infections.

    I suffered with Mono when I was a teenager, and had several strept throats. (don't know if these were related to gluten.)

    I have had excema and psoriasis problems since I was a teenager as well.

    The kicker was at 16 I started having stomach issues. After almost dying from poor nutrition and loss of blood in my Stool, I was finally diagnosed with Crohns disease.

    My self esteem sucked , and like you, so did my moods. After years of different medicines, and surgurys I know have a iliostomy…

    Now I have major self esteem issues, depression, fatigue and yes bloating and moodiness.

    I somehow cope though. I have 2 little ones (one adopted, and one foster), so I have no choice but to cope.

    This seems like I'm over doing it, but one more thing I have to say is after going back and forth from my primary to a gynocologist, telling them I keep getting random pains in my lower back, they kept telling me it was syatic nerve. Come to find out 5 years ago, it was a large Cyst on my ovary that ended with a hysterectomy because it was ruining the surrounding organs.

    Needless to say, that was another kick in the butt, because after dreaming my whole life what it would be like to be pregnant , and thinking I would have twins, etc. Etc.,,,I ended up not ever finding out…

    Yes I am blessed to have found my Princess Nicole, but still ache when I see a pregnant person, because I will never know what it's like, or I will never have the opportunity to see what my Husband and I could create with our own genes.

    I will stop wining now, Thanks for you story…You are a great story teller. That 's why you have a blog right? Take care of yourself.

    Oh, one more thing, My Husband is an Executive Chef, and we owned a restaurant together for roughly 10 years. Another reason why it's so hard to give up foods That I so Love.

    • Hi Deanna!

      My son Sam had recurring strep throat (as did I when I was a child), before he was diagnosed with celiac…and after we had his tonsils removed. I wouldn't doubt that an underlying gluten sensitivity could contribute to chronic strep throat. Approximately 70% of your immune system is in your gut, so if your gut is inflamed and highly permeable, it becomes difficult to fight off bacteria and viruses.

      It's interesting that you bring up sciatic nerve pain, that was another issue I dealt with. About 15 years ago when I was working in the hotel industry, I remember that it would come on so fast, and so severe, that I actually fell over a few times. After having yet another MRI, I discovered I have an extra lumbar vertebrae (I have 6 instead of the normal 5) and occasionally it would press on the sciatic nerve…I suspect that could have had something to do with the chronic (and systemic) inflammation caused by my undiagnosed celiac disease, because I have not had any sciatic nerve pain in the 3 years I have been strictly gluten-free.

      My heart goes out to you on your fertility issues, the ability to become pregnant and deliver a healthy baby is such an innate human drive for most women and when difficulties arise, the emotional consequences are devastating. I have met many women who struggled to get pregnant and even went as far as attempting IVF, but to no avail. After discovering they had undiagnosed celiac disease or a gluten intolerance, and after a year on a strict gluten free diet, they were able to get pregnant (on their own) and carry a healthy baby to term. I wish more OB/GYN's would routinely screen their patients for celiac disease and non-celiac gluten sensitivity BEFORE referring them to a fertility clinic, or doing something more drastic, like a hysterectomy. Alice Bast, founder of The National Foundation for Celiac Awareness is a passionate advocate on the fertility issues related to celiac disease (after much heartbreak of her own). I encourage you to read the following articles: http://www.celiaccentral.org/News/News-Feeds/View… and http://www.celiaccentral.org/Celiac-Disease/Relat… and please, do get tested, your beautiful daughters need their mama and there are wonderful gluten free options so you can still enjoy your favorite Italian foods.

      My favorite GF pasta is Tinkyada, the texture is the same as I remember wheat pasta being and I have even made some kickin' GF toasted ravioli: http://www.adventuresofaglutenfreemom.com/2010/09

      and GF mozzarella cheese sticks: http://www.adventuresofaglutenfreemom.com/2010/09

      and delicious GF Crusty Baguettes: http://www.adventuresofaglutenfreemom.com/2009/10

      Don't give up your favorite foods…just recreate them (a challenge your chef husband would no doubt embrace)! :-D

      Hugs,

      Heidi

  5. Erin says:

    Thank you so much for sharing your story here. My 5 year old daughter received her Celiac diagnosis just over a year ago. My blood test came back negative but there are many days where I doubt that result. I am at a place right now of denial. I am tempted to go GF but am scared the result might be . . . good. Ha ha. Like you, I am scared of what going GF will mean for me as an adult. Saying goodbye to all those old favorites. Thanks for sharing your experience.

    • Hi Erin,

      I absolutely understand my friend, but I will promise you this…it's not that hard, especially today, now that there are so many more wonderful gluten free options (it was slim pickings in 2005)! The biggest change I had to adopt before I could embrace my new lifestyle…was my a.t.t.i.t.u.d.e! I had a very bad one back then and it did nothing but hurt me. Once my son was diagnosed (and I started going to therapy!), I forced myself to slap on a happy face for his benefit, then I got in the kitchen and didn't come out for nearly 2 years (hence the reason I began this blog).

      What I have discovered is this:

      1). Anything that you can make with gluten…you CAN MAKE gluten-free! And quite often, it tastes even better than the gluten-filled version. I'm not joking, but it takes persistence and practice to find the right substitute ingredients (or perhaps it's the feeling of accomplishment that makes it taste so wonderful, LOL!). Seriously, I've even made gluten-free puff pastry! :-D

      2). My therapist posed this question to me 3 years ago: "Heidi, what hole are you trying to fill with the food?" Well, now, that was quite a question! I really believed at one point that it had nothing more to do with anything other than the taste of the food, but that was so not the case. It had everything to do with my relationship with my mother, which was strained for most of my life. The few times we actually bonded when I was a kid was over food (I don't blame her for anything, I was a tough child, not only with all my health issues, but with my behavior problems as well), but my mom also had difficulty showing emotion because she wasn't raised in a loving home. I never heard the words, "I love you" from my mom until I was 17 (and I've only heard them a couple of times since, but they are precious memories for me).

      I discovered quite young, that I could make my mom happy with the food I cooked and I relished those moments when I put a smile on her face instead of anger or sadness. When I had to go gluten free, and had no earthly idea how to cook or bake anymore (but that really didn't matter much because if I gave her a carrot and told her they were gluten-free, she would think they "tasted funny")…I lost my only connection with my mom and THAT was when I started going down the very dangerous path of cheating, I wanted that closeness with my mom more than I cared about my own health. Sad huh?

      The good news is that I have come a very long way over the past few years…and so has my mom! While we no longer share holiday dinners together, we have found other ways to spend time together and my hole is slowly but surely closing up. We often discuss how HARD it is to change as adults, especially after decades of taste bias/emotional ties to foods and she is proud of me for putting my kids on the gluten-free diet so young, because these are the foods to which all their memories will be based around, they will never have to feel that deep and profound loss that I did.

      3) Fear of the unknown is to be expected, but if you will just close your eyes, hold your breath and make the jump…I would be willing to bet that you will find yourself on the most amazingly beautiful and wondrous ride of a lifetime…not always easy mind you, but worth every challenge that is thrown your way. I spent too many years viewing my body as my enemy, trying to force the will of my head and heart to make my body bend they way I wanted it to. Once I gave up that fruitless battle and began to feed my body the foods to help it heal and flourish, I found my new best friend…me. :-D

      Hugs,

      Heidi

  6. Brenda says:

    I started a journey to try to get better 14 years ago. I knew something was wrong before that. I thought it was a yeast allergy, because everytime I ate something with yeast in it, I got this terrbile feeling–aching, bloating, and even naauseous. That started 28 years ago. I used to take the bread off of meat sandwiches we were given in college because I just didn't like it. It's funny how my mind knew what my body needed, but my heart just didn't get it. Neither did any doctor!

    Outside family members would tell me I looked all swollen up and would ask if I was I ok. I was diagnosed with Fybromyalgia.

    I had sever migraines that started in my 20's. I was given the usual rounds of pills.

    My daughter got Hodgkins Lymphoma 3 years ago. She itched her feet raw, much like the terrible itching you describe. Sadly it was diagnosed as athlete's foot. I believe Lymphoma is responsible for her itching in this case, but also clearly related and connected to Celiac. We also found out that she has the Celiac gene. She made it through cancer and is now looking at fighting off Celiac.

    That was the last straw for me with doctors when my daughter's cancer was diagnosed as athlete's foot. I started asking around trying to find the best doctor I could find. I had been poked and prodded, so much blood taken for tests, but not one of them Celiac. I had also told this same doctor that I felt that yeast bothered me. He just shook his head like I was crazy.

    When I changed doctors, one of the first things she said to me was that she wanted blood work. BUT she asked me if I had any allergies. I told her hayfever. She asked me about food?? I told her I had never been tested for food but that yeast had bothered me. She asked if I knew what Celiac was. I had heard of it, but didn't think anything of it. She honed in on it right away and knew exactly what to look for. She is Celiac and so are her kids. It was a gift from God! And now I am almost migraine free.

    I went to culinary school a while ago so my quest is to search out good food Celiac patients miss. My daughter has had enough problems, that last thing she needs is to have a crummy birthday cake! This week I figured out that King Arthur Flour is a big key in baking normally. It is way more expensive, but so helpful to find it! It made all the difference in the world. It is mostly rice, no beans in the flour.

    So there is my story. You have an amazing one yourself! Thank you for sharing. I'm so excited to find your website!

    • Brenda,

      Thank you so much for sharing your story, and I'm so sorry you and your daughter had to go through so much to get here. It is amazing when you find the right doctor, who is willing to help you figure our the underlying problem. Dr. Vikki and the team at HealthNOW Medical Center absolutely transformed our lives when they discovered the many underlying residual issues we had that the gluten-free diet alone could not remedy. We are now not only GF, but we are dairy-free, grain-free (including the non-grains like buckwheat, quinoa and tapioca), potato-free, sugar-free and (gasp) coffee-free! One might think that as difficult of a time I had transitioning to a GF lifestyle, that this would have crushed me, but in fact, the exact opposite has occurred. When I began to finally heal from the decades of damage caused by undiagnosed celiac disease, I actually became more aware of my body and I KNOW when I eat something that has an adverse effect on the way I feel…even though I feel like crap, I get so excited that my body is actually telling me something, LOL!

      I love the way we eat today, simple and naturally free of the foods that don't like us very well…we eat meat, fruits, vegetables and nuts and I crave for nothing (but you're right, the King Arthur Flour GF products are really good, alas, they have grains so I am now learning to bake with coconut and almond flour and we love it!).

      Hugs!
      Heidi

  7. Susan says:

    Wow, Heidi, your story is so similar to mine! So many weird problems that made no sense while growing up. I did have bowel problems growing up that the doctor called "nervous stomach" because I would just has sudden diarrhea or be so constipated that I wouldn't have any movement for 2 weeks.

    • Susan says:

      Hit a wrong button on my computer and lost most of what I wrote!

      My doctor told my mom to make me stay in the bathroom until something moved. I would be in there for hours bawling because it hurt and I wanted to go outside and play instead.

      I had many other problems, female problems, mood problems, weight problems, skin problems.

      In 1985 I was diagnosed with Crohn's Disease and that helped some but didn't take care of everything. I had a hysterectomy when I was 28 because of cysts and endometriosis. I've had to have multiple bowel resections because the inflamation was so bad that my bowel was closing off. It seemed like the only thing I wanted to eat was toast, grilled cheese sandwiches, and eggs during these times. Now I know that most of my inflamation was irritated by the gluten.

      A little over a year ago my chiropractor had got to a seminar and heard a doctor speaking about a patient with celiacs and thought of me. He did a health check and found that wheat is a big no-no for me. He gave me a start on going gluten free and I just went for broke with it. I talked to my gastro doc about everything and he agrees that my Crohn's is probably affected by gluten. He didn't concider it because I had never complained about any specific food bothering me. I just thought it was EVERYTHING I ate!

      After going gluten free I have not looked back. I can tell within 2 hours if I've had an accidental ingestion of gluten. It doesn't affect me for days but I do get pretty sick and crampy for a day. My husdand is starting to come around to my gluten free foods but he won't totally give up his wheat products. I'm still working on him!

      I've been gluten free

      • Oh Susan, good for you! I never get tired of hearing the stories of people who have such amazing turnarounds in their health after finding the underlying root cause of their symptoms…it literally gives me goosebumps!

        Be patient with your husband, it took mine a few years to come around too but once I figured out how to cook and the gluten free versions I made were nearly indistinguishable from their gluten-filled counterparts…he didn't see the sense in eating gluten anymore, and when he felt better and lost 15 lbs. in 6 weeks after going GF…that was more than enough to convince him LOL! (I contribute his initial weight-loss to no longer sitting in the fast food drive-thru during his lunch hour).

        Hugs,

        Heidi

  8. Jeri says:

    When growing up I had very bad skin rashes. My mother called it Impetigo. I can remember the scabs were so bad from itching I couldn't even bend my arms. In 8th grade I went to a dermatologist and they did around 25 skin picks on each arm and labeled them. The only thing I reacted to was common house dust.

    I worked in the medical field briefly as a medical assistant. I remember having my thyroid tested since it seemed common in my family to be low. I was borderline at the time (around age 19). Years later I had a doctor put me on thyroid medicine because I was low. I was going through fertility assistance with my 2nd child and he felt it would help. I actually wasn't ovulating every month.

    About 5 years ago I had some regular blood work and to have a check on my thyroid. I was told to start taking iron. My periods were really heavy too. I went in about 4 years ago and complained of pelvic pain. They did a hysteroscopy/laperoscopy and took one of my ovaries during. I was told I had endometriosis. Shortly after that my periods would come twice a month every other month. I became severly ill and my hemoglobin was so low they wanted to do a transfusion but I refused. I had an ultrasound done and they found large (I'm at a loss of the word). They were like the size of grapefruits. So, I ended up having a total hysterectomy (including my last ovary) almost 3 years ago. I take bio-identical hormones now.

    I've also been living with chronic low back pain for many years and x-rays, MRI show nothing.

    Last year I went to the doctor and she ran blood work including a Celiac Panel. She told me to go on a de-tox for 6 weeks. No gluten, dairy, sugar, etc. I did that and received the bloodwork in the mail. I stayed gf after looking at the labs until I saw her. When I went in she told me I have Celiac, Hashimoto's, adrenal exhaustion, chronic fatigue.

    Unfortunately, I don't have a great turnaround story (yet). I've not cheated and ate gluten. I did have an allergy panel done that says moderate for dairy. I'm still struggeling with that. Dairy aside, I've done everything I've been told, taken every supplement, etc. and I still do not feel any better.

    I was at the doctor in December but was seen by the NP. I showed her my labs and she seemed confused that the doctor actually called my dx Celiac. At the very least gluten sensitive. So, I'm confused by that. I do wonder if all my gynecological issues would not have happened had I know I shouldn't be eating gluten. Like you, Heidi, I don't have an alert to know if I have eaten it anyways.

    Bless you and your family. I love your blog.

  9. bookladyDavina says:

    I stumbled onto my diagnosis in February of this year. I was trying an elimination diet in a desperate attempt to get weight loss jump started. After 2 weeks of no dairy, fat, salt or starches, I slowly reintroduced things and immediately got sick when adding bread back to my diet. Since then I've been trying to catalog all the problems that I've had that might be related to gluten as they either disappear (or as they came back after 3 months off when I needed to go back on for blood tests..*sigh*) the ones I have thus far been able to identify, in no particular order:

    constipation, diarrhea, bloating, gas, chronic fatigue, iron def. anemia, joint and body pain and inflammation, obesity, insulin sensitivity (my doctors can't agree if I'm diabetic or not..) PCOS, infertility, numbness and tingling in extremiti7es, headaches, nausea, dizziness, cognitive malfunction (ie massive brain farts) occasional migraines, depression, lo7w libido, eczema as a child, irregular and often heavy and painful menstruation, twitchy hand muscles, hair loss, all sorts of dental issues – multiple root canals, family history of diabetes on both sides, mom has MS, occasional breakouts of "hives" (might actually have been DH), severe sleep apnea, majorly high blood pressure, dry and itchy eyes, reflux, dry mouth, vaginal dryness, cardiomyopathy, canker sores as a child, cold extremities, sore and bleeding gums, congestion, lack of coordination, vertigo…

    those are the things I've been able to id so far. I'm sure there are more.. and looking back at my childhood, I was always sickly, it was always blamed on my allergies, which no doubt did have some part to play, but no one thought about food allergies then. I was tested once while in college and did allergy shots 2for 10 years. they did mention an allergy to wheat, but no one mentioned what it could be doing to me. there weren't many alternatives at that

  10. bookladyDavina says:

    I stumbled onto my diagnosis in February of this year. I was trying an elimination diet in a desperate attempt to get weight loss jump started. After 2 weeks of no dairy, fat, salt or starches, I slowly reintroduced things and immediately got sick when adding bread back to my diet. Since then I've been trying to catalog all the problems that I've had that might be related to gluten as they either disappear (or as they came back after 3 months off when I needed to go back on for blood tests..*sigh*) the ones I have thus far been able to identify, in no particular order:

    constipation, diarrhea, bloating, gas, chronic fatigue, iron def. anemia, joint and body pain and inflammation, obesity, insulin sensitivity (my doctors can't agree if I'm diabetic or not..) PCOS, infertility, numbness and tingling in extremiti7es, headaches, nausea, dizziness, cognitive malfunction (ie massive brain farts) occasional migraines, depression, lo7w libido, eczema as a child, irregular and often heavy and painful menstruation, twitchy hand muscles, hair loss, all sorts of dental issues – multiple root canals, family history of diabetes on both sides, mom has MS, occasional breakouts of "hives" (might actually have been DH), severe sleep apnea, majorly high blood pressure, dry and itchy eyes, reflux, dry mouth, vaginal dryness, cardiomyopathy, canker sores as a child, cold extremities, sore and bleeding gums, congestion, lack of coordination, vertigo…

    those are the things I've been able to id so far. I'm sure there are more.. and looking back at my childhood, I was always sickly, it was always blamed on my allergies, which no doubt did have some part to play, but no one thought about food allergies then. I was tested once while in college and did allergy shots 2for 10 years. they did mention an allergy to wheat, but no one mentioned what it could be doing to me. there weren't many alternatives at that time and I thought it just meant that I had to wear a mask while baking and try not to inhale loose flour and don't go play in a wheat field.

    I've just gone back off the gluten and, as miserable and horrible as it made me feel again, I am never ever ever going back on it. yes, there are things i will miss, the convenience, mostly, but I just can't do it. I was feeling so much better off of it, and it took less then a week for me to bottom out again when I was back on. I don't care what any of the tests say, and, luckily my doctor was willing to take my word that I at least have gluten sensitivity.

  11. Jen Cafferty says:

    Heidi,

    Your family is so lucky to have you as their "leader"! What as story…

    My husband and I always say that we are on this crazy food and health journey and we have no idea why or where it is going. It seems like you went through so much torment to ultimately help you child and family. And you help so many of us in the community every day.

    Thanks for all you do and for sharing your story. Because you were able to communicate the details of your journey, so many others can learn from it and heal themselves too. I am going to share your post because I know that others are going through the same things!!

    We love you and thank you so much for sharing! Jen

  12. I wanted to commend you for your courage in describing your health history. So many of us in the GF community were labeled as "hypochondriacs" in our pre-GF lives. So much of what you shared paralleled my story.

    I stumbled upon the GF community by way of autism. In April 2010, my son Moose began the GFCF diet to see if his speech delay and other delays would improve. I did it to support him.

    And so began a year of massive change. The migraine headaches I suffered with from age 11 on, ended. My strange skin rashes cleared. My joints stopped aching. My energy soared.

    Then, my body started attacking other foods. Two months later, I tested high for corn, eggs, dairy, soy, and of course, wheat. I shudder to think what else.

    We still are in a period of healing. I am trying my best to bump up good fats, and looking into GAPS/SCD to "heal" the gut.

    I would like to enjoy the other banned foods, but gluten to me, is like an abusive lover that I will never, under any circumstances, take back into my life.

    Thank you for your blog and meal plans. Thank you for sharing your history with us. I will do the same for my readers.

  13. Angèle says:

    Dear Heidi:

    Thank you so much for sharing all of your adventures as a gluten-free mom and as a mom who has to deal with other food allergies/intolerances on top of being gluten-free. But most of all thank you for sharing your story. It brought me to tears as I have four beautiful boys, two of which are gluten intolerant and also suffer from eczema, asthma and allergies, and reading your story made me realize that everything we do for our children's health is well worth it if it will spare them some of the negative feelings you experienced as a child because of your health problems. I am desperately striving to be able to prevent all the bad experiences that are often associated with such health problems. We learned this February that the are gluten intolerant and have since been on a gluten-free diet and have noticed some improvements but not a total eclipse of all their symptoms. In a desperate search to help them further I decided to read a book my doctor had recommended and have just recently embarked on the diet suggested in this book. We have only been trying it for about 2 weeks therefore I can't tell you how it will work out in the end, but so far we have been able to stop my 18 month old's diarrhea as well as both his and his older brother's skin rash with this diet. It consists of eliminating all carbs and refined sugars from your diet and eating whole natural foods as much as possible. I want to share the title for two books I have read regarding this diet here in the hope that it may be able to help someone else. So here they are:

    Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride

    Breaking the Vicious Cycle – Intestinal Health Through Diet by Elaine Gottschall

    Thanks again and I love your blog,

    Angèle

    • Hi Angele,

      You are such a wonderful mama and you need to give yourself a big hug for looking into the underlying issue for the symptoms in your boys. If I have learned one thing well, it's that chronic conditions such as eczema, migraines, etc., etc. are symptoms of some underlying problem that needs attention. The good thing is that if you discover what that underlying problem is (sooner, rather than later), you can usually fix it with little or no long-term emotional or physical harm! That is the message I want to convey more than anything. Most of my health problems could have been prevented and even more important, had I been placed on the gluten free diet when I was a child…I would have grown up with those foods in my special memories and not had to go through the emotional loss that I felt so deeply at the age of 31.

      Thanks for the book recommendations!

      Heidi :-D

  14. Inger says:

    Thank you for sharing this story; I was amazed and very touched by this – have many of the same problems mentioned. The pictures of the dermatitis herpetiformis is excactly like seeing myself when I have a rash. I have never before read or heard the link between this and gluten…

    You are doing a GREAT job, keep on! :-)

    Thanks,

    Inger (Norway)

    • You are very welcome Inger, and please, do get tested. If your rash is in fact dermatitis herpetiformis, you absolutely must remove gluten from your diet. DH is the skin manifestation of celiac disease and while the small intestinal damage can be slower moving and more patchy than other forms of celiac disease, the damage is still there…and it gets worse over time.

      Hugs!
      Heidi

  15. Bethany says:

    Thanks for sharing such a painful history. It is so helpful to others.

    God Bless in your journey ahead

  16. Heidi, this is just amazing. I am so proud of you for finally being able to chronicle all of this. Your journey to get to this point that you are at is incredible. I know it is so so hard to see what you had to go through to get here, but all of your pain and illness over the years is your driving force to help thousands and thousands. Just reading all of the comments here proves to me how you are going to be a catalyst for change in so many people. You are an amazing person and I am so honored to call you my wonderful friend!

    xoxo

    k

  17. Wow Heidi, talk about a major peek inside your world. Thank you so much for sharing. This is awesome. I mean, not all that you went through, but the fact that you are sharing it to help others.

    I still waver on if my husband has celiac, but all tests come back negative. He has had a strange rash on his back, upper arms, and chest for well over a year now, and it looks a bit like this, but he said it is only a little itchy (like when touched it's a little itchy, but he doesn't feel the need to scratch all the time). I've heard the celiac related rash (won't attempt to spell it!) is intensely itchy as you've noted. Hmm…

  18. Jeanie says:

    Thank you so much for sharing your story! I, too, had a childhood full of illness. I've also suffered with intestinal pain and bloating, chronic B12 and iron deficiencies, rashes, joint and muscle pain, sinus problems and migraines.

    My diagnosis of non-Celiac gluten intolerance came in November of 2009 after my B12 and iron levels hit critically low levels, but blood tests and biopsies came back negative. I went on a gluten free diet at the request of my gastroenterologist and slowly all my symptoms disapeared! My B12 and iron levels are all normal and I feel fantastic!

    I can't say it was easy to start gf or stay gf, though. Without the support of my husband I don't think I could do it. I also research as much as possible and try to encourage others newly diagnosed.

    Keep up the fantastic work!

  19. Kathy says:

    Hi and thank you for sharing your story of the trials of diagnosising your Celiac. I still don't have a diagnosis.

    Christmas 2009 I began to loose weight, developed a rash, shortness of breath and extreme fatigue. By July 2010 I had lost aprox 65 pounds and went from a size 18/20 to a size 8/10 in 6 months without trying. Scary stuff. My doc blamed it all on depression despite my statements that my mood was good. In Aug 2010 the doc finally agreed to refer me to pulmonology for the breathing "to shut me up". I was diagnosised with asthma. My white count was 2 full points below normal and I was shuttled over to the cancer center. Lots of blood work and many invasive tests later, cancer was ruled out. My B12 was low. I had no appetite by this point and lots of muscle pain. I have a high genetic load for immune problems and 2 half sibs with gluten intolerance. All 3 doctors had a different opinion on what was wrong, ranging from 'it's all in my head' to I'm really sick. I did a lot of research on line matching my symptoms and blood work and felt the gluten was likely a problem. The week of Thanksgiving 2010 I stopped eating gluten. Aside from a few experiments to see if I could eat gluten without increased fatigu, muscle pain, bloating, etc. I have been GF. After 6 months I am beginning to feel human again. My primary doc still disagrees with gluten intolerance. Because of my insurance, i am locked in to one complex for care and everyone has access to notes. The doctors won't usually go against what a peer has diagnosised so i remain "undiagnosised". But, I feel better than I have in many years, so with or without the diagnosis, I will be gluten free.

    A question I have for folks that have been GF for awhile, is this;

    1. Is it normal to crave the carbs when you first quit gluten? I craved sweets for days.

    2. Do other folks have a similar situation and maintain gluten free despite what the primary docotr believes?

    Thanks for letting me share my story. It felt good to tell the step by step and know that people reading this have an understanding of the disease.

    Kathy

    • bookladyDavina says:

      Kathy, I have spent years bouncing between doctors. I first started having "problems" in 2004.(before then things were just as they'd always been so I didn't know i had problems..) in 2004 took a temp job during which I broke out in "hives" though now I wonder, and then I started bleeding alot. Periods were heavy, and lasted for weeks. eventually it got to where I was bleeding almost non stop and it was reverse of normaL.. would have a few days a month where I wasn't instead of the other way around. We had no insurance at the time, so i put off going to the doctor, but when I did, I was diagnoised with PCOS even though it was presenting weirdly. During that time I'd also put on about 60 pounds. Also said I was insulin resistant. So, birth control and metformin. This was now 2006. About a a year later, I finally started loosing weight again. then in August of 207 I was in a really bad car accident and took most of a year to recover. During that time, of course, I gained all the weight I'd lost back plus some extra and no matter what I was doing, i couldn't get it off. Meanwhile I came down with what I thought was a nasty cold that wouldn't go away and my husband deployed. A few months into his deployment it got to the point where I nearly stopped breathing while on the table at the chiropractor, so off a doctor I went. When I walked in, my blood pressure was at level 4 stroke ranges and I was so low on iron and blood oxygen they almost admitted me to the hospital. I spent the rest of my husband's deployment bouncing between specialists and finaly got put on several bp meds and a cpap machine. Those helped, but I still couldnt loose weight and felt horrid all the time. One of the ladies I sometimes work with suggested the fat flush diet so i tried it. Its an elimination diet and when i tried to put wheat back in later it made me sick, massive headaches, so I started looking into it and just kept all gluten out and have felt so much better since. I've been lucky so far in that my main dr was willing to take my word for it that I at least have some sort of sensitivity or allergy to it. We're waiting to see what my insurance might want, but as far as she's concerned, she's good. she agrees there's been decent improvement in my condition that she's fine with my choice to go gf and I've now been off for 3 months.

      And yes, when I went off gluten (both times – had to go back on for a bit for some blood work..) I did crave bread.. french bread, crossants, danish.. i would even swear i could smell it in my house when I know there wasn't any.

  20. Heidi – what a wonderful, emotional post. Thank you for sharing your story & all of the links. I really admire your strength & courage & determination to heal your family.

    I too am a DH gal – because of being accidentally "glutenated", I've lost life memories too, most notably shopping for a wedding dress with my mom – because who wants to look at themselves in the mirror when you're covered in rashes on your face, neck & arms???

    Together all of us in the gluten-free community are creating more awareness, educating doctors(!?!) & helping others discover an easy way to live a happier, healthier life. Life will get better for so many as awareness grows. You're doing awesome, keep rockin' it girl!

  21. Kelly Smtih says:

    Hi! I enjoy reading people's blogs on various topics and I never leave a comment but after reading your story I have never felt more compelled to comment! I am currently eating a gluten filled diet waiting to see my dermatologist for a biopsy of my intensely itchy rash which she suspects is DH. I had cut wheat out of my diet before seeing her a month ago and my rash was not active and she was unable to get a sample.

    I have been dealing with numerous symptoms since the birth of my second child in 2008 – bloating, stomach pain, nausea, asthma, ezcema, severe mood swings etc. At my wits end and having been tested for numerous things I decided to cut wheat out of my diet after one dr said I had tested positive for allergies but he couldn't tell me what it was. I ate wheat free for about a year, felt a lot better but my symptoms didn't completely disappear. So I went back to a differnet dr who dismissed my celiac suspicion and sent me away after a few more normal blood tests. I then became angry and quite depressed and decided to just eat whatever I wanted. Then the skin rash started, among other things, so I went to yet another dr in sep 2010. She sent me off for endoscopy, hallelujah! But I tested negative for celiac and positive for lactose intolerance. I went dairy free, some gastro symptoms cleared up but my skin continued to worsen. So my dr sent me off to the dermatologist, who I had to wait 2 mths to see. When I finally saw her she took one look at my butt and said it looks like DH, but it's inactive… and here I am!

    I'm so glad I came across your story, it's great to know I'm not alone on this journey, thankyou!

    Kelly

    (Sorry it's so long!)

  22. Hey Heidi–You are so totally amazing. It took a lot out of me reading your story (and yes, I cried) and flashing back to my own issues and symptoms since childhood so I know it took a tremendous amount out of you. You'd think that being a support group leader and speaking in public often about my own story, I would have become a bit jaded about it and could spit it out at will, but I still can't. I don't even want to rehash it here. The truth is after so many years of so much better health, I have kind of blocked out some of my symptoms/issues of the past. One of my favorite posts that often pops up on message boards/forums is all the problems that went away when folks went gluten free, so many of which they had no idea were even related to gluten and don't show up on the symptom lists. Anyway, thanks so much for this post. I know it will help many, many readers.

    xoxo,

    Shirley

  23. Blog Rehab says:

    Thanks for sharing your story. I'm just learning about gluten sensitivity, have been gluten free for just one week and feeling pretty good. So glad I found your blog. I will learn a lot here!

  24. Katie says:

    Hi Heidi,

    I just wanted to thank you for sharing your story. It really reaffirms my “diagnosis” and means a lot to read about others who have had issues. A rather condensed version of my story, which is basically the last few years. Many of the things you mention hit home for me. I had a fair amount of symptoms even as a child and was never diagnosed. About 3 years ago, after having been given a "Possible" diagnosis of PCOS by a regular doc and being basically told that I needed to go on Metformin, despite my blood sugar levels being basically normal (I refused)…I decided to start seeing a woman’s based health center. My hormones were definitely so very far out of whack, but they didn't come to the conclusion of PCOS. It took some time and bioidentical hormones to get me back to a place where we could work from. After more history and other issues cropping up they did a bunch of lab work. They found that, along with other issues, I couldn't digest carbs very well, but no gluten sensitivities were noted. Despite that fact they decided I should try a gluten free diet (just for a month at first) to see if it helped, as they were quite certain that was a part of my issues. I was hesitant, but decided to fully embrace the change to give it a fair trial. I was amazed that within a week my severe acid reflux was going away. My post nasal drip started to somewhat clear up after a few weeks. At the one month mark I was definitely starting to feel better. I was sleeping a little better, wasn't bloating like a balloon after meals and my mind was so much less foggy. I was truly amazed and so thankful that they had finally helped me figure out a piece of the puzzle.

    Since that time I've been much more in tune with the items I eat and what affects me. I've since had to go dairy free after realizing how miserable I felt after eating dairy and now am mostly nut free as well. Almonds, cashews etc give me a rash or itchy throat. I can have peanuts in small doses, but they affect my tummy and give me diarrhea, gas and bloating if I eat too many.

    Through it all the woman's health center has supported me and helped me. My husband, who is my rock, has been so supportive and understanding. I'm thankful for the knowledge I've gained and wouldn't trade it for the world. It’s hard trying to share it with people who don’t understand though.

    I some one of the hardest parts for me are the feelings I've lost some of the things I used to love and I still struggle with this at times. "Friends" often don't understand and tell me I'm being neurotic/difficult when I worry about the food the kitchen at a restaurant will bring me or what I can eat when I go on a trip. They tell me to suck it up, I've got food allergies and there are people out there that are worse off than I am. While I absolutely realize this is true, it's still not fun worrying that the meal at the restaurant you are consuming has the power to make you sick for days on end if it is contaminated.

    I think the takeaway for me is that I was put on this journey for a reason. I feel like it is my duty to help people at the supermarket, especially when they have the confused newbie look in the GF section. I’ve had so many wonderful conversations with strangers about all the different products around.

    I guess I will cut this “short” at this point. I again want to wholeheartedly thank you for sharing your story with us. It is a hard thing to relive a painful past, but without the past we would not be who we are today. :) Keep on doing what you do and being the wonderful person you are!

    ~Katie

  25. Vanessa says:

    Hi,

    Thank you for sharing your story. I relate 100%. Im 24 and throughout my whole life I have gone through the same things as you. I was never diagnosed with ADD etc but I have been given medications that have complicated things for me, made me sick and had nothing to do with my issues at all. In fact I learned that the medicines I was given were NOT gluten free which is why they only added to my problms! I wrote you last week and looked back today for a reply and read this blog. I started crying when I read about the beach episode, the fetal position on the floor and other key points throughout your story. That has been my whole life! In gym class the girls made fun of me in the locker room, boys wouldnt date me or use my problems against me, teachers thought I was being beat at home or self mutilating myself. "Allergies" means nothing to those who dont understand. Im glad to say that this is exactly what I have and I am having a skin biopsy done in August. (I cant wait for the results) I have had doctors laugh at me and tell me its soaps,lotions and purfumes that I have used. But even after those changes…it wasnt until 2007 when I came home from Alaska that I went to see an allergist. I was tested for everything and the conclustion my doctor came too was a gluten sensetivity. But I was lead to believe that all I needed to do was to cut out breads and pastas etc, however in relation to your thanksgiving story, I learned that that is not true! The headaches, bloating, the period-cycles, random charlie-horses…I even discovered that I had cysts this past summer! Thank you so much for sharing this! I am inspired and happy knowing that I am not the only one who has suffered the various emotional & physical pains that this brings.

    My mom was right, your amazing! Now if you could only come to NY….haha :D

    Thanks so so so so so much! <3

    Vanessa

    • Hi Vanessa!

      Thank you so much for sharing your story with me, I have a few tears streaming down my face as I write this! It breaks my heart that many people with DH or other gluten/food allergy related skin disorders are misdiagnosed for many years before finally figuring it out. All the emotional pain and suffering that never had to be, if only a proper diagnosis (and treatment) had been instituted years prior.

      On the bright side, having gone through it myself, my experiences have made me not only a stronger person, but a more compassionate human being all around. Who we become in life is often the result of our struggles growing up and how we choose to overcome them. For me, I will always choose to make lemonade…I have too much living to make up for! ;-)

      Hugs,

      Heidi

  26. Cheryl says:

    As near as I can tell, I've been battling "whatever it is that I have" for almost 15 yrs or longer. Thinking back, I believe the trigger for my issues started when I was pregnant with my oldest child. Over the last 14 1/2 yrs I have noticed mood swings, lack of libido, constipation, diarrhea, painful gas, bloating, easy bruising, migraines, lack of energy, ringing in the ears, dizziness and my most current is the "rash". It wakes me up at night because it itches so badly. No cream has helped. Have been told it's not psoriasis. I finally called dermatology at the beginning of the year when the patch was 4 in by 6 inches. Still waiting for my appt. It now covers from one shoulder to the other and up both sides of my neck. This is the largest that it has ever gotten. It started 4 or 5 yrs ago but it was always small and would eventually go away. This time it's out of control. My DH has blamed most of my stuff on things like lack of exercise, lack of vitamins, not enough water, stress, etc. Everything but what I'm telling him that it is. I notice symptoms in both my children from moodiness, stomach issues, easy bruising, peeling skin, dental enamel issues, unexplained hives, migraines etc. Two out of the three of us have had our blood tested which came back negative. Hoping my trip to the dermatologist in July will shed some light. My thumbnails also have horizontal ridges which are very pronounced. Other nails are just beginning to get them as well. My oldest also looks like she may be getting them. I just want someone to tell me for sure if everything is related. I have been eating Gluten Free to the best of my ability. Hard to do with 3 others in the household think it's just crazy talk. Is it bad to wish for a diagnosis of Celiac Disease just so I can finally say "I told you so"??

  27. Shelly says:

    I just came across your blog tonight and I've been reading it for the past two hours. What a comfort it's been.

    My 15 year old daughter was finally diagnosed with a wheat/gluten allergy on May 20, 2011. She has been a sick kiddo since the moment she was born. You name it, she's had it. From the time she was four until she was eight, she took weekly allergy shots. She has had chronic sinus problems and finally had sinus surgery in October of 2010. She has also had her tonsils/adenoids removed, but yet still suffered from chronic ear and throat infections. She has had tummy problems as well and back in Feb of this year was so constipated that she threw up everything she put in her mouth-it had nowhere to go.

    In May, she once again started throwing up everything she put in her mouth. She also complained of a horrible pain in her side. We thought she was once again constipated so we started in with the juice and Miralax treatment, like we had done before. Once things started "moving" she was still throwing up. This went on for a week and a half. We even went to the ER one weekend and was told she was suffering from a virus. I asked the ER Dr if it could be a food allergy and he just looked at me and said "no."

    When I finally got her into the Pediatrician, she (the Pediatrician) walked in and said "She has a food allergy." They took four tubes of blood and we have been gluten free ever since.

    Evidently gluten makes her throw up and makes her side hurt. I would suspect all of her other health problems over the years have been linked to this as well.

    Going gluten free has been overwhelming and a lot of days, I feel very lost. I love to cook and bake but feel as if I don't know where to start when it comes to gluten free baking.

    We've really tried to NOT cheat, though we've made mistakes and missed hidden gluten and bless her heart, Tanner (my daughter) has suffered. As a matter of fact, she ate hot dogs today, thinking they were ok and is currently throwing up and suffering. I hate it for her. It just breaks my heart. Sure do wish I could trade places with her.

    Thank you for sharing your story. And thank you for such a resourceful blog. I can't wait to read more.

  28. Dawn says:

    I am adding my thank you to this list because after my oldest daughter(and then my youngest son and then my husband) was diagnosed with dh and celiac diesease, I found your blog on facebook. I was very excited to see a blog that not only dealt with the disease but was also from a mom's perspective. I do not have celiac but after being in our new gluten free household for almost two months, if I have something with gluten(especially wheat) I don't feel well after so I know that this change is better for all of us! Our family had atypical symptoms as well and in fact if I had not come across an article about dh and realized that is what my daughter had, we might not have diagnosed this with the others until greater damage was done. Mostly I wanted to say thank you though for writing about the moods etc that you experienced. Our oldest daughter has always been pretty extreme in her emotions but when the first symptoms of dh appeared and her menstrual cycle started I honestly thought we were going to all lose our minds! She was another person entirely and equating it to being on drugs is totally dead on. Thank you because it helps to hear from others who have gone through this and for all of us to know how much it can affect SO many different parts of a person first. Finally I am truly grateful to read other stories because it helps those of us who are new to this journey to stay strong and stay committed to being gluten free! Our family has been able make this transition with so much knowledge and even though I still brace myself once a month(!) the transformation here has been incredible!!

  29. Kristi says:

    Thank you for sharing your beautiful story and I want to praise you on using your past struggles as fuel and stepping stones for your journey.

    About 3 months ago I self diagnosed myself after googling what my intensly painful itchy rash on my elbows, face and chest was. I was shocked at what I found, but the Internet got me farther than any medical professional ever did! I spent thousands in deductibles and testing before I told all my drs they were quacks. I was always told my rash was stress or hormone imbalance. The rash never boiled up, kinda looked like clusters of mosquito bites that were painfully itchy, and my skin would feel like it was crawling and burning. Within the first week of going gf I didn't realize how much of a fog I was in. Headaches were gone, no stuffy nose, and for once in 5 years my skin didn't itch painfully. I still had the rash, but no further itching.

    I had epilepsy as a child that was always determined as idiopathic, and "grew out of it" by time I was 13. Fast forward to my 20's, I never really had infertility issues bc I started on the pill at 12 for severe female issues, always had cyst bursting on my ovaries but didn't have pcos. 8 months after the birth of my son, I developed this Freddy Kruger(sp?) looking rash on my elbows, chest and face. Drs wrote it off as stress or hormone imbalance bc I just had a baby. So I'm thinking maybe this is just something that happens to some after pregnancy. I covered the bases- am I leaning against something? Did I switch detergents? Is it nerves? Or am I just plum crazy making myself think I'm itching crazily? Benedryl, yes please,and lots of it!! The itchiness would come and go throughout the next 5 years. One night I was itching so bad I couldn't sleep, 6 benedryl later I found myself in the bathroom scratching my arms with a pumice stone and pouring rubbing alcohol over it to feel so "soothing". The next morning is when I self diagnosed myself. I found a picture of a woman on a celiac webpage whom posted a picture of her face and I froze. Holy moly that's what I look like!!! I went gf immediately bc my dads dad died from intestinal cancer before I was born and my dad said he always had a rash on his arms from hanging it out the window as he was driving. I now had 2 young kids and didn't want to go the same way my grandpa did. My kids show no signs of celiac or gluten intolerance, but I'm always on the watch. I have not been to the dr since my self diag, bc I've come to the conclusion drs are quacks and always looking to rack up test and off the wall testing and medications. If going gf was the only real "cure", then that's what I will do. After being gf for 2 weeks I noticed my stomach was weird-I didn't have to run to the bathroom after I ate, which I thought was just normal for my system. I could go on and on about things so I'll stop now and say even though I've only been gf for 3 months, this was a life altering decision and findings. I feel great and my skin looks beautiful. For once I don't have to explain to someone why it looks like I have chickenpox on my face or arms. I'm still struggling with cooking, mainly baking, in desperate need of a good gf bread that does not cost an arm and a leg to bake or buy(yuck!!)

    I wish everyone well on their gf journeys as well as their health.

    • Kristi says:

      One thing to add– I contacted my former physician to let him know gluten was causing all my problems and he straight up said “sorry he couldnt help me before, but to be honest they don’t teach much in the nutrition section in med school, maybe 2 days of nuturion and it was not in depth.”

      Thank you to everyone that has posted stories not only here but other sites as well. I truly believe the stories y’all shared can, will, and have saves and changed lives!

  30. Christi S says:

    I read this when you first posted this but I somehow missed the part about heavy periods. I suspect my periods were heavy as a teen but since they don't say exactly what is "normal" it is hard to know for sure. Then after the birth of my second child, it was so bad I was housebound for the first few days of my period since I would bleed through an overnight pad in about 2-3 hours. Between that and my prolapsed uterus, I went for a hysterectomy about 7 years ago. I don't regret the hysterectomy completely but now I wonder how necessary it was(then again since I have been gluten free for only 1 1/2 years that would have been a long time of dealing with it.)

  31. Elizabeth Molina says:

    Thank you for sharing your story. I had eczema as a child along with attention problems in school. I've self diagnosed myself with ADHD inattentive type. I joke around about it a lot but mostly I'm serious. I had grown out of my skin problems so I thought. My story really starts out just about two years ago at 40 years old I was diagnosed with stage III breast cancer. It was "missed" on two separate mammograms. I found the lump and another mammogram didn't see it still. I was devastated when I heard the words "You have cancer." I underwent the "works" of conventional therapies. Just before my diagnosis I broke out in a strange rash on my abdomen. It disappeared. I didn't think much of it as I was really busy with my treatments/surgery etc. During my chemo treatments I also had a different rash on my left leg. Eczema again!! My vitamin D3 levels were also severely lacking. During my chemo treatments I really struggled with eating certain foods. I didn't want to ingest any sugar, processed flour, or anything else that would be considered bad for cancer. I was so scared. My sister had lost her battle with BC in 2002 at the age of 37 and here I was just a few years later facing cancer too! I have spend the last years trying to recover from 4 separate surgeries, chemo, and radiation treatments. There were times when that strange rash would come back and fade. Somehow I tried by internet search to figure out what it was. I typed in my symptoms and found DH. It looked similar. But I don't have celiac disease! So I dismissed it. Well before one of my surgeries I broke out in the rash again…this time it was more severe. Well if it was gluten that's the problem then I had to try and not eat any and see what happens. I did my best to take myself off of gluten for two weeks and it cleared up! I went back on a "bread fest" and my symptoms reappeared. Since then I've had blood tests and they were negative. So I went back into "denial" mode and have been eating gluten. Rash reappeared. This time I went to a dermatologist for a biopsy…I'm waiting for the results. I have also just been diagnosed with Hashimoto's thyroiditis. I've been reading that gluten intolerance is a probable cause for Hashimoto's. I have two boys. My oldest was born 3 mo early. (I too had bleeding that cause me to go on bedrest) My 2nd son was born via C-sect. due to the uterine fibroids that wouldn't allow him to turn. Looking back I'm sure I've been suffering from gluten intolerance all my life. Before I was diagnosed with cancer. I had stopped eating pasta because every time I ate it I felt terribly bloated. My son's who are 11 and 10 were just diagnosed with ADHD. I'm thinking we're all gluten sensitive.

    • Elizabeth Molina says:

      …to add more info. I ended up having to have a hysterectomy due to excessive bleeding during my menses. My mother died of ovarian cancer at the age of 48. I've had too much to handle. But I am trusting in God for the answers. I'm seeing now that he is answering my questions as to why? I feel like a I'm all alone. But in reading these stories I'm hopeful that this is all going to help my kids. I've been to this doctor and that doctor. No one has been able to see the big picture. But I'm seeing it now. I'm hoping to find a good Dr. in Albuquerque that won't act like I'm nuts! (My mother was told that all her symptoms were in her head by several doctors!)

  32. Jana says:

    Heidi…thank you so much for sharing your story in detail. I kept saying "yep…that's me too" while reading your account. My grandmother died of NHL, so that really strikes a chord with me. I'm new to this journey and quite reluctant myself…but after being diagnosed with Hashimoto's Disease last month, I know I MUST eliminate gluten, dairy and soy in order to improve my health. Thank you, thank you, thank you for your blog. It is a God send for me!

  33. Molly says:

    My now 16 month old started with horrible eczema at five months. After multiple rounds to the pediatrician, two dermatologists, and lots and lots of steroid cream I decided to try the allergy elimination diet. It was difficult because I was nursing him and had to stop eating all of the allergy prone foods. (I had previously gone of off dairy with mild results.) Within 24 hours the eczema on his face had greatly improved. Within a couple of months it was almost cleared up entirely. I have no official diagnosis for him, but I do not feed him wheat, dairy, eggs, corn, beans, and am holding off on peanut butter for a while. Thanks for all of your recipes and advice!

  34. Hailey says:

    My legs look exactly like your knees did. I have been wondering what on earth keeps waking me up in the middle of the night to scratch vehemently at my legs. I kept telling people I had a problem with ingrown hairs when I dared to wear shorts, but that has been a rare occasion this summer. My acne has gotten horrid too, but that's been a problem all my life. I was recently told I have IBS-D, but no mention of why I get continual canker sores and my white spotted teeth (I kept thinking I have fluorosis!)

    I have been pressing my boyfriend and his mother to get tested for celiac, as lupus and possibly celiac already run in their family, but now I'm starting to suspect this could be my underlying cause, though even my family members keeps telling me it's not the case. I don't have any means to get officially tested, but I think I'm going to try going gluten free for a while. I am already suspect of any and all dairy, as that seems to not be helping, but even with cutting it out I'm still having problems. I look 5 months pregnant some days!

    I am also now VERY concerned about my young daughter. I think going gluten free and dairy free would be good for my whole family, but I hope to back that up with some testing some day soon.

    Thank you so much for this post. It's so very hard to figure out what on earth is wrong with yourself when you have no insurance, no money, and not a whole lot to go on, besides your gut instinct (no pun intended!)

  35. Chalise says:

    Heidi,

    Im so glad I found your website because I feel pretty confirmed on a lot of the symptoms I have been experiencing. I have never even considered a lot of the stuff that was said in your blog and the comments given afterwards. I went on accutane when I was 13 or fourteen twice in a row. I know I have been experiencing major gastrointestinal troubles ever since I was about eleven- having been diagnosed with everything from IBS to stomach ulcers. every time I go to the doctor I feel the only thing they are able to tell me is that I have a stomach ache and I am stressed out. I finally went and got tested both by skin and bloodwork for celiacs, wheat allergy, and milk allergy. I remember that before then my uncle was diagnosed with celiacs and had been experiencing the same symptoms as I so I went off gluten as well and took the tests then. The tests all came back negative. EVERY one. I remember being really frustrated because I had no answers and I KNEW I felt better when i went off wheat but at the same time, I was at the point in my life that if the Dr. said it, it must be true so I went back to my (what seems like) my all wheat diet. The stomach problems continued, I was always coming down with bronchitis and sore throats, and in my senior year, mono, so I was getting bad grades and school as well. I recently found out that I have severe anxiety and depression issues that once again kicked me in the face after failing countless classes in college, that I really had a lot of issues holding me back in life that I need to get resolved. I went to a homeopathic Dr. and he did a scan for the foods and chemicals that could be hurting my body and find out which parts of my body were suffering. Wheat, milk, sugar, and canola oil were the culprits of my headaches, stomach aches, weight issues, frequent illnesses, depression and maybe anxiety.

    NOW. I have some questions about all this- Is it really important to be diagnosed with celiacs disease if you are already off wheat? I could really identify with you when you were talking about not wanting to give up wheat all together. I am for the most part wheat free unless it is "worth the pain"- the Dr. that told me Ihad problems with wheat said that it could be celiacs, but it could also just be a sensitivity. I have done a bit of research on the differences between the two and celiacs on gluten means possible permanent damage vs sensitivity which means you might have a stomach ache for a day but no permanent damage.

    then my second question is- you said that you craved bread products all the time when you went off wheat. THATS what I am experiencing right now and why its so difficult to go off gluten for good- I want it ALL THE TIME!! what is the connection there and how can I over come it? is it just time and practice? I am just at a really difficult point right now because I have a lot of questions but I feel like no "real" Dr. ever takes my problems seriously and because of those previous tests, I dont know where to go from here. Sorry if my comments are disjunct and hard to understand… Im just looking for an out and maybe some commentary if you can give it- I have loved all your responses so far.

    Chalise

    • bookladyDavina says:

      Gluten is an addiction. and just like any other addiction, it is a hard one to break and there will be cravings. I can tell you that they go away. I don't have a firm DX of celiac vs sensitivity. I personally don't need one for me. I had such a drastic difference that I don't care, I'm never touching the stuff again if there is any other alternative (emergency circumstances where there is no other option at all are the only time i would consider it, and everyone is gonna know how sick it makes me, so it better be one heck of an emergency…)

      The first few weeks were the hardest. i really wanted french bread. that was the big thing for me.. i wanted the soft and crunchy french bread.. and i wanted it bad… but as the weeks went by, I got over it. There are some really good substitutions for just about everything now, though I really don't use bread much at all these days, but if i want it, there are some great ones out there or i make it myself. But now, if I have to walk through the bakery isle or the bread isle, the smell is mostly off putting. There might be hints of "oh that smells yummy" but mostly it turns my stomach a little and I internally refer to it as poison. It just does not smell good to me at all. I don't want it. I do occasionally miss the ease of meal planning, esp when on the road. I have very picky teen step children who do not like going to chain restaurants. So it can be hard, but I wouldn't go back for a million dollars.

      If you feel better without those foods, then embrace life without them. It will so be worth it to not have to deal with the aches and pains and the anxiety. :)

  36. Katherine says:

    I was diagnosed with Crohn's when I was 23. I remember being scared to death at all the testing that I had to go through to get that diagnosis. When I finally got it I thought back over the previous decade or so and could see the signs but like you, I wasn't clearly presenting symptoms until things got pretty bad. Then I went on scads of medication to control it for over a decade. Not too long ago I was reading another blog called Deliciously Organic and she did a grain free challenge. At first I scoffed at the idea because due to the Crohn's, eating fruits and veggies were extremely difficult for me. Then I started researching grain and gluten free living and I found out that those who are allergic to gluten often had a rash that just wouldn't heal. I decided I didn't really have anything to lose except getting off my medications so I weaned myself off wheat and other grains at first. I went through a pretty hideous withdrawal period and it was then that I became pretty sure gluten was my issue. After the withdrawal, I started weaning myself off my medications. This took a bit of time, but I am doing well without any medications and avoiding gluten. I am still figuring out the whole gluten thing and occasionally get accidentally glutened and get very ill. More ill it seems that when I consumed it regularly. I still get hit with cravings sometimes. I am still working through wanting to be "normal" and eat "normal" foods. At the same time I am terrified of eating out. I have been going through the period of trying to replace everything, including some not so healthy foods with gluten free versions. I think I am seeing the light at the end of that tunnel though and I am ready to take the last steps towards acceptance. Now, not only am I off meds and feeling better, but the rash has gone away and my skin is no longer cracking on my feet. My dad also has serious digestive issues and I am trying to convince him to go gluten free. He's a bit of a hard sell, but I think when I go visit around the holidays and he sees how much better I look he'll come around. My husband is already convinced that this is a permanent lifestyle change and has been ridding the house of gluten containing foods. The one thing I really miss, and that I MUST find a good replacement for is pizza. Pizza is a pretty important part of my diet and I have to figure out a good crust. Thanks for sharing your story. I am looking forward to seeing my GI next spring and giving him the update. I won't be able to qualify for a test at that point since I have already given it up, I look forward to maybe opening his eyes a bit about gluten and Crohn's. Thanks again.

  37. umnasser says:

    I'm just beginning to think I may have CD- i have painful bones, especially in feet and cramps at night, I am ADDICTED to bread but feel bloated afterwards and suffer from 'upset tums' and gas quite a lot…..but the thing that has really made me decide it could be this is the rash I have- for a few years I have been getting little bite like sores on hands, knees, shoulders butt and yes, put it down to insect bites- now I wonder.

    But this rash- does it have to be severe or can it be two or three little cuts?

    Thanks- day one of my gluten free diet just to see what happens the aches and pains and rash.

    • umnasser says:

      Oh and by the way forgot to mention- my father died at the age of 70 with stomach cancer after years of 'bad stomach' days.

    • umnasser,

      No, the dermatitis herpetiformis rash is not always severe. My DH only consisted of one or two little blisters on my knees for many, many years. And it was seasonal too, only showing up in the summertime (yet I ate gluten year-round, so why did it go away in the winter??). Celiac is a master chameleon and it manifests differently in each person (making a correct diagnosis very challenging).

      I do encourage you to see a doctor before implementing the gluten-free diet though, it's nearly impossible to do the testing after you implement the diet (without first going on a difficult gluten challenge).

      Best,
      Heidi

  38. Ash says:

    Thank you so much for taking the time to post your story. I've been sick my whole life–migraines, debilitating joint pain, ulcers in my mouth, depression, infertility and miscarriages, periods so heavy and painful I had to stay home in bed, you name it. My short-term memory sucks and there are many days I feel like I'm mentally wandering through a thick fog. I had a lot of GI issues when I was younger, though they're quite so bad now. It felt like someone was simultaneously stabbing me with a big knife and twisting my guts in a clenched fit, and I'd spend hours sobbing in the bathroom. The doctors I saw mostly blew me off, saying it was all in my head or giving me one stupid diagnosis after another (for example, "growing pains" didn't account for my being unable to walk unassisted when I was 22 and hadn't grown an inch in years).

    The only time I've ever felt healthy was when I was breastfeeding. My son was sick from the time he was a week old. He spit up constantly, had such bad eczema that it looked like he had red leather all over his body instead of skin, and had constant cold symptoms. I was told repeatedly that it was all normal, even when he would seemingly randomly get hives or have his face swell up so badly that he couldn't open his eyes. What wasn't "normal" was supposedly from the dry air or something equally stupid. Eventually, he had such a bad reaction after eating his first microscopic bite of egg that he stopped breathing and the doctors had to admit that there was something wrong. He was 8 months old and I'd just been laid off from my job. He was allergic to everything under the sun, and I strictly avoided those foods in his own diet and in mine. Suddenly, my happy but very sick child was happy and healthy. It was like night and day. He nursed until just after his second birthday, last month. I was healthy that entire time too, for the first time in my life. No migraines, no joint pain, no stomach issues, no depression, truly normal periods (not caused simply by pregnancy/childbirth, as they were just as awful as ever until my diet changed)–we even got pregnant again pretty quickly.

    Well, I'm back to eating whatever I want, and apparently that's not such a good thing. I lost the baby (a very early loss this time–I hate to sound less than distraught over the death of a child, but after having experienced much later miscarriages that required hospitalization and emergency surgery, I was somewhat relieved). I feel like I've been hit by a truck. It's hard to think. After cooking Thanksgiving dinner and being literally up to my elbows in wheat flour, I'm covered in a horrible rash that's even crept into my mouth, making it hard to eat or talk. Thank goodness I have a good doctor for the first time. I saw her two days ago about this stupid rash to rule out anything contagious, and when I mentioned celiac, she actually listened. I had blood drawn yesterday, but even if it doesn't slow that I have celiac disease, she's told me I'll probably have to be gluten-free for life.

    It's not as scary this time around–like you said, as a mom, one's willing to do just about anything for one's kid, and I've had a year and a half's experience at being gluten-free now. I was loving that short bit of time I had with wheat, though. I'll miss it, and at least while nursing, I knew there would be an end to my dietary restrictions. Not so if I have a gluten intolerance myself. I'm thankful that my son's healthy now, and his allergist (had to hunt for a good allergist, too) thinks he'll grow out of the allergies he hasn't outgrown already (dairy, egg, and peanut). I'm also thankful that everything's working out the way it has. If I hadn't lost my job, I wouldn't have been home to do all the cooking and obsessing required to keep a toddler with dozens of food allergies safe. If he hadn't been allergic to wheat, barley, rye, and oats, I wouldn't have cut those out of my own diet. If I hadn't done that, I never would've known what it felt like to be healthy.

    So that's my story. Thanks again for sharing yours. I'm from a small town and always felt like a freak, pushing myself to keep up physically even when I just couldn't. It's a relief to know I'm not alone after all.

  39. Stephanie says:

    It's so nice to find a community that can explain so much of how I have felt over the last 10 years. Diagnosed with "pregnancy induced hypothyroidism" in 2002. Turned Hashimotos in 2004 which resulted in a stillbirth at 34 weeks (interestingly enough both pregnancies were boys- the original diagnosis and the hashimotos). Fast forward to raising kids and screaming at them in a rage and feeling rageful for hours and hours afterwards. No short term memory, depression, that foggy feeling. I found a post on Facebook relating thyroid and gluten and immediately started to research it further. Took myself off gluten and went to a naturapathic doctor who is hopeful I can get off my thyroid meds. I am mourning the loss of bread, really good artisianal bread, in my life but the way I feel now makes it worth it. I have never felt so good in my entire life. Thanks for your blog.

  40. Candace says:

    Reading your description of your DH just brought me to tears because it's been our story for at least 15mo now. My daughter had eczema as a toddler and we went toxic-free and it went away and then all of sudden when she turned 5, she got these weird marks on her elbows. Month and month she would break out in rashes and each time it would include a new body part. The doctors kept telling us it was eczema. I'm sure you can imagine the stress, frustration, and heartache we went through night after night listening to our daughter scream in pain and itching. I kept telling the doctors that it wasn't eczema. She was tested for staph, infections, food allergies and all came back negative. We started seeing a holistic allergist who let me look at a skin disorder training guide where I spotted DH. I researched it and I just knew. After negative blood tests, thankfully we were sent to a new pediatric dermatologist who recognized it and sent us for more blood work. We got our positive diagnosis yesterday! So glad I found you on FB :)

  41. Stephanie says:

    Hi :)

    I'm 23 years old and was diagnosed with celiac disease when I was 20. I complained to my family dr for honestly as far back as I can remember that every time I ate I wanted to die. I would bloat up like crazy to the point where it felt like my lungs were being squished. It would get extremely difficult and uncomfortable for me to breathe. I told me dr this every few months over and over wishing he would do something but you know what he said to me? "Eat more"

    I pretty much gave up after that just accepting the fact that I would never feel healthy and that was it for me. Then I went away to university and I guess the stress just made everything 10 times worse. All I ever did was sleep. I would set myself 6 alarms and sleep through them all right until 4pm usually. I went to a dr at the school who finally ran some tests and that was when I was diagnosed.

    I've been on a really strict gluten free diet since then BUT I still constantly feel sick, moody, exhausted, bloated, gassy everything. Nothing has changed! I also noticed recently that I'm unable to lose weight and my once perfect skin is now horrible my forehead is covered in acne. I've cut out casein and even a few other foods that I tested intolerant to but nothing seems to help.

    I also don't know a single thing about being celiac. I've never been to a specialist or had a dr or anyone tell me anything…all I do is stay on the diet. I know there's got to be more health risks and things I should be aware of but I have no clue. All I know is that I've never woken up in the morning and felt good. I read about people who go on the diet and feel so much better but I've never had that. I don't think I could be accidentally eating gluten without knowing because any time that I have eaten it I've gotten violently ill afterwards which I didn't think was an effect.

    Honestly it's just good to vent about this stuff because it's exhausting and horrible to feel unhealthy, tired, bloated and have stomach pains every day. Anyways, that's my experience with my past and current struggles.

  42. Carmel says:

    Hi,

    I first heard of "Gluten free" when our daughter was severely vaccine injured and became "autistic" in 2003. All the leading specialists on vaccine injury that I took her to, suggested I try the GF/CF diet which I have had her on ever since with good results. I have even seen a small handful of completely non-verbal autistic kids recover totally after being on the GF/CF diet and healing their gut. I have written some articles on this as I am an author and writer.

    But for me, I had tried all forms of dieting and exercise and nothing would drop the last 30 pounds I needed to loose after having my last child. (previously I had always been slim and fit and ate an unusually healthy, organic, low fat, balanced diet) and I finally saw an MD who takes a holistic approach and tested me for food allergies. My regular doctors had all just told me to keep up the good work of eating healthy and exercising and to not worry about the extra weight…they all had said it would come off eventually —which it never did after 6 years. After seeing the more holistic, integrative MD who ran tests, I came back testing with high food sensitivity to wheat, and moderate sensitivity to dairy, eggs, and sugar. I completely stopped consuming all of the offending foods and over 8 months effortlessly dropped 38 pounds and felt great. My chronic back pain went away as well as my recurrent sinus infections which previously were occurring 2-5 times per year. (a vicious cycle of antibiotics which only add to the leaky gut)

    Over the last two years, gluten free, I have cheated twice and both times I got sick with a nasty viruses immediately, that turned into terrible sinus infections and bronchitis. Living GF is the secret to my getting my life back, losing weight and getting/keeping my immune system healthy. Cooking and baking GF is not hard for me as I have done it now for nearly 8 years for our disabled daughter.

  43. Deena says:

    Hi, I have had a rash on my face for months, I don't know if I would call it a rash but the skin on my face is changing rapidly, there are lines and dots in the skin, it changes daily so I know they are not wrinkles, it itches and looks unhealthy. i went to a homeopathic doctor and he ordered the Cyrex gluten associated sensitivity and cross reactive foods tests. the homeopath says that he thinks because these foods are not agreeing with me my body is detoxing though my face instead of my organs. I just got the results back….I am out of range in just about everything except rye, barley,polish wheat, yeast and corn. Any ideas where to go from here? My plan is to stop eating cheese, oats and anything else in the out of range category. What are your thoughts? It looks like from one of your posts that the rye, barley and polish wheat are the indicators for a gluten allergy, is that true?

  44. Pauline says:

    Speechless! How brave you are because you pass all that trials in life. The most challenging part is when your pregnant, you can have reason why not to let go because of your baby.
    I'm so proud of you!
    My recent post caffeine and acne

  45. Wendy says:

    Ugh, I have been sick all of my life it seems. Was diagnosed with uveitis at age 16 (I’m 36 now), have had 4 eye surgeries, I’ve always had stomach issues (just chalked it up to a nervous stomach), most recently I’ve had a horrible rash over most of my torso, thighs, chest and back, mouth ulcers another bout of the uveitis after 20 years of no flair ups. My joints ache, I’m tired, I have no short term memory. I’ve seen doctor after doctor and nobody seems to want to label it celiac. I’m determined to get a diagnosis. Thank you for sharing your story!

  46. Whitneywalker says:

    Wow, thanks for sharing! I was diagnosed with Celiac disease in 2010 and it was also a long road for me. I can relate in so many ways and I think that is the problem. Not everyone has the typical signs and so many have a lot of other signs. I was diagnosed with IBS that made doctors dismiss the stomach symptoms, but they could never get passed why I threw up all the time. Anyway, the one thing that I could never get fully diagnosed is the DH. They did biopsies, but by the time they did I was already on a gluten free diet and I think that prevented that diagnosis. The place on my knee grew for 4 years and kept getting bigger and the only way it finally disappeared was extreme gluten free diet. You mentioned your allergies. I have now been gluten free for almost 2 years and the only thing that seems to have worsened are my oral allergies. I now have epipens just in case and found that I can’t eat certain foods raw and I keep finding new ones that cause me to have severe reactions. Have you noticed that your allergies are worse or better now?

  47. Jo_rowland_82 says:

    Thanks for sharing. I have a bad rash on the backs of my thighs, my back, back of both arms. Burning itchy like crazy for three months now. Everything about me is pointing to DH but three doctors and a dermatologist later and no one will hear me. I had a blood test for celias.. Came back negative but also showed very low iron. I am always tired, have asthma, acne, cranky, i wish someone would just beleive and help me reach a diagnosis of gluten intolerance. I dont know what to do at this point

  48. Lukefamily says:

    Thank you for posting! I have been GF since feb after i had a positive biopsy. ( i had 10 years of misdiagnoses of chrons, lupus, etc). I feel much better but i keep breaking out in this blistering rash all over my forearms, palms and feet. I have cut so muc hout of my diet i dont think there is much left to cut out! I have determined yeast/yeast extract is the enemy as well as gluten. I cut out dairy…. the rash would go away temporarily after i stopped eating it but after a couple weeks its back again. I have been exhausted lately too. Thank you again for the post I am going to follow up with a derm doc!

  49. Leah F. says:

    Hello. I have been reading your posts for te past couple of months and it is very helpful and interesting. I self-diagnose my gluten sensitivity and plan on getting it checked by my doctor soon I am about to turn 30 in 2 weeks (yikes!) and have had an irregular menatrual cycle ever since my very first period at 15! I was tested for PCOS, and other things and was told I’m fine. I would go 4-6 months with no period. I finally read somewhere that gluten can cause insulin levels to be irregular and I know insulin affects womens cycles. My friend who has a thyroid problem also told me when she stays off gluten, her insulin is normal and she is able to lose weight and feels so much better. Well, I decided to try living gluten free and see how it works. I’ve been off gluten almost 4 months and have gotten my period every month since! (which is great since we are trying for our first baby) I will be going to my doctor because I want to get tested and know for sure. I have other stomach issues but nothing that bad. My mom does have chrons and she and her sister were told they have a slight sensitivity to gluten.

  50. Charlineboulerice says:

    This post erased all my doubts about my 2 year old diagnosis of gluten intolerance. I recognized so many symptoms in him and myself and family members that I couldn’t ignore this anymore and started to take this new lifestyle very seriously. The picture of DH on your blog was so telling! As you mention, the doctors have been completely inadequate with this diagnosis, my family doctor not even understanding why I wanted to see a gastro enterologist! We were put on the right path by my naturopath and removal of the gluten has made such a difference! I am also starting to eat gluten free outside the home and hope it will cure my eczema, psoriasis, fatigue and mood swings. What started the whole journey for us was not gastro intestinal problems, but symptoms of ADDH that appeared only after he ate certain foods. We did a ELISA blood test that revealed intolerance to bovine protein, eggs and some fruits. After cutting those products, symptoms were greatly reduced but something remained. 6 months later, at 21/2, the classic gastro intestinal symptoms started appearing and that’s when the naturopath suggested we cut gluten as well. It took a while, but 6 months later, I can say that the worst is over and we are finally seeing the light at the end of the tunnel. After reading about the whole subject for a year now, I’m horrified at the fact that so many kids on ritalin could improve simply with a change of diets. We were definatly going there with my son. Thank you for sharing all this info on your blog, it’s been so precious in the last year.

    St

  51. Misty says:

    Wow is all I can think to say!

    I have been on a mission to find out what this horribly itchy rash on my elbows and knees are. I have run across DH several times but thought, I don’t have any stomach or digestion issues. Now I will be insisting on this test after reading your story!

    I just had my 5th child, and none came easy. I have been diagnosed with PCOS. I also have horrible allergies and chronic sinusitis. I get cold sores constantly and was on Zovirax to control them until I had an allergic reaction to it! I am always tired with no real reason. My thyroid is low but within “normal” range. I asked to be tested after i gained 30 lbs in 2 months with no lifestyle changes. My father died from non-hodgkins lymphoma several years ago.

    Too many similarities . . .

  52. Clarita says:

    I have yet to get the biopsy done (both internal and external), but I’ve tested positive for the mutation, have a definite gluten sensitivity, and have had a scaly, itchy, disgusting rash all over my body for the past four months. 

    I’m currently in the process of healing (hardcore gluten-free for two months), but this week I ate at a restaurant for the first time in a while that didn’t take cross-contamination as seriously as they should have, so I’m itchy and scaly all over again. ARRGH!It’s both encouraging and annoying as hell to read about other peoples’ doctors ignorance of gluten sensitivity and intolerance. At 24 my body broke out in the leper rash described above, and my dermatologist diagnosed it as psoriasis. It was strangely symmetrical, but always more severe on the right side of my body than the left.Topical steroids kept my skin in check for six years or so, but after having two bunionectomy surgeries (that were supposed to make it easier for me to run, but in fact has left me in more pain) in 2010 my rash came back on my legs, arms, and scalp.Last year while planning for my wedding I went to two different dermatologists to try to figure out how to “fix” my problem long enough to walk down the aisle. The first referred me to the second, who had me doing UV light therapy with pretty good results. I was concerned bc I had to have a suspicious mole cut off in 2009, and that doctor had told me to avoid the sun, but it was only temporary, so I figured why not?This past year has been horrible, but my sweet husband and family have been great. I stopped going to the UV therapy, and slowly the rash crept all over my body, filling in the formerly smooth skin on my stomach and back. The itching was intense, but honestly it never struck me before last year that NORMAL PEOPLE DON’T ITCH ALL THE TIME! I had been itching my whole life, so to me it didn’t seem strange to be constantly kind of itchy, or to suddenly have an intense itch that would literally make my body twitch in reaction. (side note: I also have been diagnosed with Tourette’s syndrome, and ADHD… when a girlfriend of mine suggested that these diagnoses could be caused by gluten I almost fell out of my chair).Last fall I spent too much time on WebMD and convinced myself that I had Lupus, another auto-immune disorder that caused symmetrical rashes, so I went to the university health center and had a blood test confirming that this was NOT my problem. The PA who saw me told me it was just one of the worst cases of psoriasis that she had ever seen, and not a contagious rash (which by the way, all of my students and peers were concerned about). I am a PhD student and an Assistant Instructor at a state university, so lessening my stress load was not a viable option. I gave up gluten at the suggestion of a gluten-free friend (we call ourselves glutards) a year ago, but I was still sneaking bites of my husband’s pizzas, etc. until 2 months ago when my mother found a Wellness doctor in Austin who ordered the blood test and informed me that I do, in fact, have the mutation for Celiac. Lucky me!

    As you can tell, I’m still in the bitter (anger) stage of loss with regard to gluten. I’m frustrated that I can’t find a restaurant with a seriously gluten-free kitchen in my town. I miss going out to dinner with my friends and husband. I want to punch people who roll their eyes at the words “gluten free”, as though it were some sort of decision, like being a vegan or a veggie — not that there’s anything wrong with that. 

    A friend of mine stuck his chop stick into my soup at dinner the other night after I’d only taken a few sips, and I told him it was his now bc he’d been using those to eat tempura. I know I could have ordered another soup, and that would have been the smart move, but instead I just got pissed off. 

    Why WON’T the medical community TALK about gluten?!? 

    • only1aurora1997 says:

      Until 1999 medical texts books were bieng publisehd telling med students that celiac was a mostly european disease. was rare in the USA and only 1 in every 5000-10000 is the us had it. That’s why the medical community won’t talk about it. They don’t know about it.
      Until papers published very recently you were told unles you had celiac or a wheat allergy then there was no way gluten could be a problem. Gluten intolerance or sensitivity didn’t exist. It was psycho-somatic.
      They don’t know. They know what they were taught and most can not or will not look beyond their text books to actually examine the patient in fornt of them.

    • The greeks says:

      I have been working slowly at finding Gluten Free restaurants.  Legal Seafood has its on Gluten Free menu, J. Alexanders will not offer anything.  Keep asking and lets put together a list of the go to restaurants…I am sure they will wise up pretty soon.

      • PF Chang’s now has a GF menu. Some restaurants will accommodate you if you ask. You can often substitute a corn tortilla for a flour one, for instance. Leave croutons off salad (WATCH salad dressing! go for oil and vinegar to be safe). And let’s all THANK General Foods for making Chex cereal GF, they have lots of yummy flavors in Chex now. 

  53. Kendra says:

    I have a family full of food allergies and intolerances. Because of poor medical support and blind faith in my healthcare practitioners my 9 r old daughter sufferd as an infant and toddler. To cut a verrrrry long story short. She had sever eczema with little pimples all over. It looked just like the rash in your pictures and mysteriously cleares up when she was 4-5 years old. She tested postitive for milke, egg, wheat, and peanut allergies. Her skin was inflammed from the top her her head to the soles of her feet. This started from the time i started introducing foods table food. This even though she was still brest fed and had no complimentary formula. I recently had another highly allergic baby but was much more savy about protiens passing through breastmilk and corrected my diet and prepare gluten free, dairy free, soy free meals.
    Since going gluten free my nine year olds constipation and moods swings have vanished. Your site is the first time I have learned that a pimple-y could be celiac. The first time in 9 years that I have heard of “silent” celiac disease.
    Despite my frustration with moder medicine. thank you soo much.

  54. Mkatherinemorrison says:

    I was diagnosed with DH in 1967, I was 5 years old…I am now 50 years old. As a child I was never on a gluten free diet, to be honest I  don’t think doctors knew what Gluten free was then in 1967. I have been on dapsone for 45 years, I have blood test(cbc) every 6 months. I have recently went on a Gluten free diet, it seems the older i get Dapsone doesn’t respond as well as it did 20 years ago, but it does take care of the problem. I have 2 children ages 24 and 30 no signs of DH with them…I had no problems during my pregnancy or delivery with them and I took Dapsone everyday(100mg) everyday. I have learned to live with this disease for 45 years. The disease didn’t win me over but this gluten free diet is, I have been on this diet for 3 months and it is the hardest thing I have ever had to do. If anyone has suggestions on this I would be so thankful and grateful. Having this disease for so long and just living with it the way I have and now changing my eating habits has taken a toll on me. My email is mkatherinemorrison@gmail.com if you would like to know more about my 45 years of enduring this disease or suggestions for my gluten free life….God Bless you all….:)

  55. Awolmar says:

    Now you got me thinking… Those blisters look so familiar to me! Are they supposed to appear on ones legs/back? I usually get outbrakes on my hands in clusters where they sit tight to each other in winter months, they itch like crazy and are filled with fluid then new ones come again after I scratch them away. When I have showed these to the doctors they have just said they don’t know what it is.I got those first time when I was in the US (au-pair) and became vegan but disappeared eventually when I started eating more “normal” and came back home. When I was pregnant/lactating I had none of those for years but now came back again this fall/winter.
    My oldest son was diagnosed with Crohn’s and autism at the age of 4!! He and the other two kids had redness and skin rashes as small kids too. My aunt has psoriasis, my mom  – vitiligo. Me and my mom has problems with thyroid, I have anemia, heavy menses… I am often anxious, was too thin (craaaving bread like crazy)  as a kid too – I often got tummy aches from all the bread I ate.
    I tried going gluten-free a few times these last few years after reading stuff on internet but since I have never had a diagnosis I can’t motivate myself to go gluten free longer than three weeks or so. I wonder if I should get myself tested? I am just so scared of having coloscopy done…

  56. Imashopper says:

    I’m crying as I type this. Thank you for your candor. It’s been a long road for me (almost 40 years) and I’m currently waiting on my DH biopsy results. As I stare at my purple scars on my knees and stomach, I really don’t even need the results… I’ve been GF for several years now but haven’t maintained a 100% GF home. My 13 yr old daughter, unfortunately, seems to follow in my genetic trail (which is a huge part of my sadness.) We’ve both tested positive for the genetic markers, have had crazy IgA levels, most physical symptoms, etc., along with some bizarre health issues. I really am trying to believe that this is a gift in some way but it’s just so hard. Has anyone else grieved or am I just being a baby about this? I’ve always been “the strong one.”

    • Amandapriest says:

      I have spent many a day in tears not being able to help my daughter. The physical symptomns are difficult, although, we find the emotional stress more difficult to manage.

  57. Amandapriest says:

    This post was so valuable. My daughter has been diagnosed with DH/Celiac Disease after 8+ months of a horrific rash that just won’t quit. She has been Gluten free for 6 weeks. The rash still comes and goes, yet not the same in severity. I still hear her scratching against the carpeting or using objects to get rid of the “itch”. DH can be dvastating to your life. Although the rash is lowly dissipating, her level of fatique and “grumpiness” continue. We are hoping that with strict adherance to a GF diet, these symptoms will also diminish.
    We are very grateful for the one doctor that was willing to go out on a limb and research/test a bit further. My daughter has seen 7 doctors along this process, had multiple invasive tests, and no one could provide answers. My reponse to anyone going through a similar situation…keep searching. There are doctors willing to listen and will persevere until an answer is found.

  58. WOW. hindsight, eh?  although my stuff wasn’t as much as yours, looking back i’ve probably dealt with about half of the atypical symptoms you’ve listed.  i have kinda naturally gone about 95% gf as hubby is gluten intolerant (undiagnosed), and then i have SEVERE bloating now when i eat gluten.  i’ve ALWAYS bloated when i’ve eaten, but it’s just so much more noticeable… *sigh*  i’ve been in denial about it i think, until the last 4 weeks, now it’s a neon sign i can’t ignore. 

    i’m pretty sure that my “dyshidrosis” (eczema) is actually misdiagnosed DH…. from wiki: “Dermatitis herpetiformis is often misdiagnosed, being confused with drug eruptions, contact dermatitis, dishydrotic eczema (dyshidrosis)…”  i was so elated when i got the dyshidrosis diagnosis because it had been misdiagnosed as athlete’s foot for 15 years by 5 different GPs… now it turns out even the dermatologist possibly screwed it up.

    thanks for this post – i’ll be off to my new gp this week to start the process.

  59. Ktjansen2013 says:

    Hi, Im 17! And me and my family have just recently diagnosed me with lactose intolderance. Only because we noticed whenever I ate dairy id get VERY sick to my stomach. For several months now I’ve been severely struggling with itching. To the point where I’m bleeding and bruising. Once after running I itched the insides of my thighs so hard I woke up the next day and my thighs were completely black and blue. Unless I eat dairy I don’t really notice any stomach problems but I cannot seem to stop itching my body (everywhere) and even my scalp !. It’s KILLING me. I abhor going to school with scars all over me. I also have eczema. Which has been rough. But this Sunday my parental decided to take me on a gluten free diet. It’s been almost 3 days now and today I couldn’t stop. itching .. iknow it will take more than just a few weeks for itching to subside if I am gluten intolweant but I didn’t expect it to get worse! Has this happened to anyone else ?

  60. Hi, I was wondering for years why I had an itchy rash that never went away. I thought it was damage to my skin from the sun, as mine is primarily on my upper chest and some on my abdomen, but the little blisters would pop up on my legs sometimes. I hate doctors and never had it checked out. Glad I avoided doctors, I am sure they would have not known what it was. My self diagnosis was two fold. It happened sort of by accident, that I got really sick and did not eat for three days. I noticed my ever-present skin rash was clearing up! I wondered if food was a connection? Then I searched the internet for pictures of my rash, and finally found enough pics of DH to know that is what I had, in connection with knowing that my lack of eating for several days made my rash already clear up that fast. I was furious that I was going to have to give up gluten. I dearly love pizza and pasta. But I wanted my skin to be clear and so I gave up gluten. It worked! If I accidentally eat gluten (Kellogs Corn Pops got me last week) the rash re-appears in all its horrible itchiness and takes about 2-3 weeks to clear. Now I look at gluten-foods as poison. Does a cake look yummy? no, it’s poison. Cookies? poison. Pizza? poison. Ok, I do miss pizza. I have found some decent GF substitutes in bread and pasta, which makes things more tolerable. Oh and Better Crocker makes a wonderful GF brownie, I’m serious, it tastes like the real thing! So it’s not so bad. I’m just glad to have an answer, clear skin, and stop the damn itching! 

  61. Sherry Brazee says:

    I found out 2 years ago I am 55 now. I have had stomach issues all my life. A rash came on my arm years ago and I could not get rid of it. Since I am Gluten Free it has gone! My family have a hard time with this now. Some people pass jokes. But man I feel like a new person since I changed my diet. I cant have milk products either which is even harder having to give up both. I did cheat and got a milkshake and frys. Pretty sure the frys were not gluten free. Because sunday evening and Monday I was in alot of pain! I am through that taught me a lesson. My mother died of dementia and I am pretty sure I got this from her. I am afraid my 31 year old son has it but he want think about being tested or changing his diet. He has allergies and leg cramps and very bad gas! Alwyas burping! Everybody i hear that has some kind of issue I always tell them try the diet for a month if you feel better you know!

  62. kathie says:

    What a story of so many difficult health problems! So much suffering that didn’t have happen.

    I found out that the off and on itchy, blistering rash that I’d had since I was 23 was dermatitis herpetiformis, when I was 57. That was two years ago. If it weren’t for the internet, I’d probably still be eating gluten today.

    My DH was in the “on” phase when I ate a bunch of cheese rolls at a restaurant. The next day, I was slammed by a big outbreak on my backside. I’d had enough itchy torment and decided to do an internet search on “itchy blistering rash”. Up popped dermatitis herpetiformis and I was pretty sure that I had it. I called my HMO and made an appointment with whoever would see my first. Luckily, it was the young doctor was had diagnosed my hypothyroid several years earlier and who was familiar with celiac disease. I told her what I thought my problem was and she ordered the tTg-IgA blood test . It was positive and I quit eating gluten.

    Going gluten free made me little sad for about a week, I really missed cookies but didn’t give a darn about pasta, bread or pizza. The good results started happening within a week or two and my skin was clear within a month. My regular doctor told me I probably just had a mild gluten sensitivity and that’s why I got better so quickly. But reading about celiac disease made me realize that it’s been following me my whole life. In childhood, it was rough, dry skin that never went away, mouth sores and being underweight. As an adult, early menopause and osteopenia in my 40s as well as being hypothyroid. And then I remembered my dad, who had passed away years before had been diagnosed with celiac sprue, although he didn’t follow the diet.

    I’m fortunate that my health has been good almost all my life. That probably kept me from going to the doctor as much as I should have. The only time I sought help for the DH resulted in a diagnosis of “contact dermatitis”, that great catch all term for mystery skin problems. I considered the rash something I had to live with for over 30 years. Maybe if I’d been persistant, there would have been a celiac diagnosis years earlier.

    It’s been easy for me compared to so many celiacs and I’m grateful for that.
    The miracle to me that eliminating gluten has made a difference. Perhaps being older makes going gluten free easier. There really aren’t any social pressures to eat certain foods that younger people may experience. I don’t cheat, I don’t want to go back to the way it was.

    • Hi, Your story sounds very similar to mine. I was diagnosed in Feb of 2012 with contact dermititis. I figure something out this summer. Not a beer drinker but when we would go to the ballpark and tailgate I would have a few. In the stadium I would always have some red licorice. Skin would break out. I went gluten free in the end of August and things really cleared up. In Oct went out for anniversary dinner and had seafood dinner as well as an appetizer and had a huge outbreak that I seem to be having a problem getting rid of. Appointment with Derm Dr in Dec.(sure can’t get in to see them in a hurry). I will have him test me for DH and hope that with a gluten free diet and some medication I will be getting better. I woud love to know if there are any other food and drink things I should be staying away from. Thanks Alice

  63. TSS says:

    I hope by now you are feeling better, but if you are still getting exhausted you need top make sure any vitamins you are taking or medications are gluten free. I had to call the manufacturers on some to find out that they were not. Also if you have a wheat allergy and your using shampoos, cosmetics, etc. that contain wheat that could be the cause of your exhaustion. You may need to be allergy tested if you haven’t already done so.Good luck with everything.

  64. Anna says:

    Very interesting. I too wore baggies on my feet with ointment for YEARS! I literally shed tears when reading this part of your post. I have asthma and have really struggled with joint type pain and fatigue for over 10 years. I’ve always had pimply rash where it clusters, will get them on scalp face and neck mostly. The ones on my bottom are always coming and going. I thought it was heat rash and keep it powdered. I’ve always had difficult periods. Cramping. Diag with anemia in 2006 and that’s what triggered my 2 hr Internet search. I’m shocked that celiac causes anemia. I’ve been refusing hysterectomy or other surgeries and have asked the dr if there could be another cause. ( just because i am a woman its due to my period? Prove it.) My adopted daughter has down syndrome so I’ve also been researching celiac because it’s more prevalent in that population. I am scratching my head in amazement.

  65. I’ve been dealing with almost all of the issues you discussed for as far back as I can remember, and I’ll be 30 in march. It was only this past September (2012) that I was urged to visit a naturopathic doctor and have been able to get some of this under control. Thank you so much for sharing this. The more I find out that I’m not alone, the less crazy I feel!

  66. Liz says:

    A Tibetan Buddhist lama once said at a teaching on living with illness “sometimes it’s better to take advice from an old patient than a young doctor” this site is certainly a testimony to the truth of his statement. He went on to advise people to search until they found a doctor that likes them he called it “finding your karmic doctor” it seems no one gets a diagnosis until they find this. Many of us seem to have to become our own “karmic doctors”and then just find someone to run the tests.

  67. Guest says:
  68. srose says:

    I have just recently been diagnosed with DH. It actually didn’t take long for the diagnosis from the first set of blisters. Initially my family physician thought it to be bed bugs, as they were just little red bumps. As those bumps turned into massive blisters all over my body, my boyfriend and I decided, enough was enough and I went to the hospital. The emergency doctor looked me straight in the eyes and told me, I’ve done this for many years and I have no idea what you have. He advised to come back the next day and see the dermatologist. Which I did. After about a month of blood tests and skin biopsy’s, I received an email confirming that I had DH, which at the beginning was a relief, because I thought great, I can control these blisters with a gluten free diet and Dapsone (which I was immediately prescribed). Everything was going great, the blisters were drying up, I wasn’t getting any new ones, the purple round reminders are still there. But about a week ago, I started getting the blisters on my face. I have done everything I know to exclude gluten from my diet. The worse part, I’m not getting the blisters on any part of my body but my face and I am at a loss of what to do. I can hide the rest of my body, but I can’t hide them on my face. I have no idea what I’m doing wrong. I’m an emotional wreck, I’m embarrassed to go out and even go to work. Desperate need of some advice.

    • Meagan Amick says:

      If you havent figured it out yet check all your facial products. After i went gluten free everywhere cleared up but my face and only around my hair line. My shampoo had wheat it and was breaking out my skin that my hair touched. I also found it in my make up. so check anything that touches your face something has to have gluten in it! Good luck.

  69. Hannah says:

    I suffered for over 15 years with “eczema”. I went to dermatologist after dermatologist who always prescribed steroid creams for treatment. After a severe case of hives and a trip to yet another dermatologist, I decided to inquire about seeing an allergist. The dermatologist told me that he didn’t think it would make a difference and just wrote me off another prescription of a steroid cream.

    I ended up seeing the allergist and he helped me a lot at that point in my life. I did a skin test and discovered that I was allergic to basically everything and he helped me control it through controlling my environment. I was on allergy shots twice a week and taking a nasal prescription, as well as oral allergy medications. I learned about tackling two types of histamines, one through Benadryl and the other through medications like Tagament HB. If I couldnt control it on my own, he would give me Prednisone to wipe it out.

    Later on when I didnt have insurance any longer, I had to remedy myself through things I learned and try to deal with outbreaks. Dont use a washcloth or take hot showers/baths, pat dry with a towel, dont wear certain fabrics, wash everything in the bedroom in hot water every week, and the list went on.

    This trend continued for over 5 years. However, I got to the point where my skin looked like the plague. I would itch to the point that I actually felt like I wanted to cut my skin of with a knife and sometimes I thought it might actually feel better than suffering. I tried cocoa butter, almond oil, olive oil, expensive lotions and nothing helped to sooth it. I even wore non latex gloves with aquifor cream and hydrocortisone cream at night while i slept to moisturize and try and make them look somewhat normal. I was in pure misery. It was to the point where I would pop about 6 benadryl a day, still be itching beyond belief and not be able to sleep at night (which is not healthy or normal), but I didnt have any other way to resolve my dilemna. Everyone would suggest things to me and of course they never worked. Oatmeal soaks were misery! And I truly felt that no one ever knew my pain. It was embarrassing to hang out with my friends or go out in public knowing that my skin looked like something off of a zombie or horror movie.

    Around this same period in my life, my mom was suffering from severe indigestion. She was gulping down baking soda and water everyday, thinking it was a “Natural” way to cure herself. She tried oregano oil and all sorts of things. I begged her to go see a doctor, before she would one day discover she had some sort of gastrointestinal cancer or something else just as bad. She for years suffered from depression and was even diagnosed with type II diabeties. She went and was tested and discovered she had Celiac’s.

    She told me about it and had begun eating gluten free and her indigestion immediately ceased. She suggested that I try eating gluten free, since it is hereditary and could be the cause of my “eczema”.

    At first I refused to even go there. Being the total carb addict that I have been over the years. But after all the benadryl that failed to work and the misery I was enduring, I decided it couldnt hurt. So, after a couple of weeks, my skin was almost entirely clear. I still to this day do not have health insurance, so I havent had a proper diagnosis. But, I feel after all the failed diagnosis and doctor experiences before, I dont need a doctor to tell me I have Celiac.

    I know that when I eat gluten, I itch uncontrollably and my hands look as if my skin is falling off. When I eat barley or malt, my skin cracks. When I eat hidden gluten forms, I get these tiny itchy bumps on my fingers and hands. If I straight up eat wheat, I get puss filled blisters that itch uncontrollably. Going gluten free is still a challenge for me at this point in my life. Not necessarily from the obvious forms of gluten, but from the hidden gluten. I’m striving to get rid of all processed foods from my diet, because that is where I find I hit a brick wall every time.

    Since buying and eating a sausage from the grocery that had a huge green “gluten free” label on it and my super bad reaction to it, only to later read the ingredients and discover monosodium glutamate, I realize the labels in grocery stores cannot be trusted. There needs to be stricter laws when it comes to food labeling, to protect those of us that have to suffer from ingesting these contaminated products.

    I am grateful for sites like this, where I can find recipes and support from others to realize that I am not alone in this. Thanks for sharing and all of your wonderful recipes.

    -Hannah

  70. Melody says:

    Hello! So I am late to the party but I’d love some to share my story and figure out if it sound simliar to all of yours. My 4 year old daughter popped up some bumps that at first were tiny and now on the elbows and behind one knee are sort of mosquito bite like in size? They are reddish, raised, and on the back of the knee look like warts almost. Some background: My husband, his mother, his grandmother, and my older daughter all have some kind of gluten intolerance that blood tests at the dr’s office don’t seem to “pick-up” on but when the gluten is removed they stomach aches, migraines, diarrhea and the rashes on their wrists and/or elbows seem to go away. I am inclined to believe this rash my youngest daughter has is the same thing and took her to the doctor the other just to rule out any other possibilities such as: Exzema, Psoriasis, mites, anything viral. He agreed with me that it was not any of those things but could be a food allergy. I have decided to take her off gluten for a few weeks to see if the rashes disappear. How long did it take for you all to see a difference? It’s been about 5 days since her last glutenous meal and I think the bumps are still popping up?! Thanks for any help.

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  1. [...] blog, you’ve already read some of this info on her blog earlier. More recently, Heidi shared her complete personal story. I strongly encourage you to read Heidi’s story and even share it with others. She includes data [...]

  2. [...] sodium, etc. of processed foods.  I’m still dumbfounded that this actually happened to me (remember, I’m the person who cheated on the GF diet for 3 years after her celiac diagnosis).  True blogger confession:  I used to stalk the soup aisle at the grocery store, praying that [...]

  3. [...] health issues identified that she had atypical celiac, the detailed backstory to which you can find here. But in addition to her, she has been dedicated to keeping her family’s health in tact by [...]

  4. [...] my experience with atopic dermatitis/eczema, dermatitis herpetiformis, psoraisis and canker sores here), I can certainly empathize with the deep emotional impact that the highly visible symptoms of [...]

  5. [...] 1) If you have celiac disease, you have a leaky gut.  You cannot develop celiac disease (or many other diseases for that matter) without having excessive permeability of the small intestine.  Impairment of the intestinal mucosal barrier has even been implicated in the development of atopic dermatitis, a.k.a. eczema (I wrote about my many skin problems, including eczema, psoriasis and dermatitis herpetiformis in this post). [...]

  6. [...] on the gluten-free diet, it took 7 weeks of eating gluten-filled meals 3 times a day before my dermatitis herpetifomis exploded in a rash biblical proportions (gluten didn’t make me feel bad as I was eating it, [...]

  7. [...] sharing my personal story of living with undiagnosed celiac disease last spring, my father brought a series of frightening events that occurred just over a decade ago [...]

  8. [...] I ever intentionally ate, because my final day of reckoning was a mere hours away.  And if the Dermatitis Herpetiformis outbreak of epic proportions hadn’t knocked my head on straight, my son’s imminent celiac [...]

  9. [...] rash never went away. After more research, I stumbled upon this blog. I was shocked at the atypical symptoms and how many I had. The one that hit me the most was the [...]

  10. [...] Heidi, in her blog, writes about her life-long struggle to get a meaningful diagnosis for herself and for her family.  She says that testing for celiac disease and gluten sensitivity should be the first diagnosis to think about  – not the last! http://www.adventuresofaglutenfreemom.com/2011/05/dermatitis-herpetiformis-and-other-atypical-sympto… [...]

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