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).
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.
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).
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!).
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.
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