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Celiac disease, Autoimmune Disease and A Little Piece of My Journey

I want to share a few videos that really struck a chord with me because of my own personal journey through the land of autoimmune disease and undiagnosed gluten sensitivity.

*I am not a doctor or any other trained medical professional for that matter, so please keep that in mind. My blog is a personal blog and I am just a 36 year old mom who has celiac disease, dermatitis herpetiformis, Graves’ Disease, Hashimoto’s thyroiditis and have also been diagnosed with a slew of other “bizarre” medical issues over the course of my life.  Because I did not exhibit the “classic” symptoms of celiac disease, none of my doctors ever thought to look beyond the scope of my symptoms to find the underlying cause.

I have undertaken a medical odyssey for answers and truth, wherever they may be found (of course when it comes to celiac disease, that always seems to be a moving target).  I am just curious about my story, and how I managed to slip through the cracks for so long.  I thought I would share the information I am learning along the way, in the hopes that if any of this strikes a cord with someone who hasn’t been diagnosed with gluten sensitivity yet, that they might get tested.  I can’t imagine how different things could have been had I been diagnosed with gluten sensitivity BEFORE it turned into celiac disease.  The sooner one finds out that they are gluten sensitive, the better they will be in the long run.  One’s health is a heavy price to pay for food that may unknowingly be toxic to you.

There is more available information on gluten sensitivity today than there was even just a year ago.  I personally find the whole “spectrum of gluten sensitivity,” which includes celiac disease and dermatitis herpetiformis, to be utterly fascinating.  If you think you have an issue with gluten, but your tests for celiac disease come back “negative,” you may find some valuable information in what Dr. Petersen has to say.  The first video pertains to autoimmune disease as a whole and gluten sensitivity.

The following video is more specific to autoimmune thyroid disease and gluten sensitivity:

I was diagnosed with Graves’ Disease in 2004 and this was the upteenth diagnosis that I had received over a lifetime of unexplained medical oddities.  This diagnosis finally set me on the path to discovering my “hidden” celiac disease.  I was diagnosed with Graves’ Disease after a sore on my leg, would not heal.  My primary doctor initially suspected Type 2 Diabetes, because diabetics can have problems with wound healing.  After she ran a blood test (which came back negative for diabetes), she called me to say that my thyroid came back “high,” in fact, extremely high.  I had no idea what that meant at the time, so she referred me to an endocrinologist to check it out further.

The first tests Dr. G ran on me, to see what was going on with my thyroid, included (the “normal reference ranges” that I list, were for 2004):

  • Total T3 (my score: 221, with the normal reference range of 57 – 175).

According to WebMD, the Total T3 test is:

Triiodothyronine (T3). Most of the T3 in the blood is attached to thyroxine-binding globulin. Less than 1% of the T3 is unattached. A T3 blood test measures both bound and free triiodothyronine. T3 has a greater effect on the way the body uses energy than T4, even though T3 is normally present in smaller amounts than T4.

  • Anti-TPO-Ab (my score: 428 with the normal reference range of 0 – 34).

According to the Mayo Clinic:

TPO, an enzyme normally found in the thyroid gland, plays an important role in the production of thyroid hormones.  A thyroid peroxidase test detects antibodies against TPO in the blood.  The presence of thyroid peroxidase antibodies in your blood suggests that the cause of thyroid disease is due to an autoimmune disorder such as Hashimoto’s disease or Graves’ disease.  In autoimmune disorders, your immune system makes antibodies that mistakenly attack normal tissue.  Antibodies that attack the thyroid gland cause inflammation and impaired function of the thyroid.

  • Thyroid Stimulating Immunoglobulin (my score: 186, with the normal reference range of 0 – 129).

According to Johns Hopkins University:

Thyroid stimulating immunoglobulins, also known as TSIs, are autoantibodies that are produced by the immune system in the setting of Graves’ disease.

  • FT4 (my score: 1.5, with a normal reference range of 0.8 – 1.6).

According to WebMD:

Free thyroxine (FTI or FT4). Free thyroxine (T4) can be measured directly (FT4) or calculated as the free thyroxine index (FTI). The FTI tells how much free T4 is present compared to bound T4. The FTI can help tell if abnormal amounts of T4 are present because of abnormal amounts of thyroxine-binding globulin.

  • TSH (my score: 0.021, with a normal reference range of 0.4 – 4.5).

According to MedlinePlus:

TSH is a laboratory test that measures the amount of thyroid stimulating hormone (TSH) in your blood. TSH is produced by the pituitary gland and tells the thyroid gland to make and release the hormones thyroxine (T4) and triiodothyronine (T3).

*If you have ever been confused on the TSH test (it took me forever to understand why a “low” TSH number (like my 0.021) indicated a “high” thyroid (hyperactivity), click here for a great article explaining it!).

Apparently, my scores were “good” enough for Dr. G to diagnose me with Graves’ Disease, and oddly enough, Hashimoto’s thyroiditis (still not clear on how one can have two seemingly opposite autoimmune thyroid conditions).  All I can remember thinking to myself, as I sat in his office and heard the words “Graves’ Disease,” was oh no, my eyes are going to “bug out.” Seems silly to me now, but that was all I knew of the disease back then.  It was enough to reduce me to tears and ask what was the best way to make sure that didn’t happen.  I also wanted to know if I would ever be able to have another baby, and if so, what was the most efficient treatment to get me to that point as fast as possible.  Dr. G recommended Radioactive Iodine Ablation, so that’s what I did.

Over the next 10 months, after my thyroid “died” and I was put on a thyroid replacement hormone, my TSH levels began to soar, reaching an eventual high of around 150, despite being on a very high dose of Levoxyl and a T3 hormone, Cytomel.  It felt as though the life were being sucked right out of me.  I was extremely lethargic and put on a ridiculous amount of weight.  Add to that the fact that I was a relatively new mother at the time and still battling some postpartum “adjustments.”  It was utter hell to care for a baby when I barely had the energy to get out of bed, and I quickly found myself in the midst of a deep depression, and was promptly put on antidepressants.

Poor Dr. G., he was seeing me monthly back then and had grown so accustomed to me showing up in tears that he would greet me  with a box of tissues (I always went in assuming that I would get more bad news, like an even higher TSH level than the previous month)!  Love that man, it makes all the difference in the world when you have a physician with a compassionate bedside manner.

It was Dr. G. who discovered my hidden celiac disease in April of 2005; after being at his wits end as to why I was not absorbing my thyroid medication.  When he said he was going to test me for celiac disease, I laughed at him.  A few years prior (I cannot recall the exact year, but I believe it was 2000), when I was still in my career as an event planner for a major hotel, I ironically detailed a celiac disease conference.  This was back when celiac disease was still thought to be a rare childhood disease, and I can clearly remember thinking to myself, “Whew…  I am in my mid-20′s, I do not suffer from stomach aches and diarrhea and I am not super skinny.  I am in the clear for celiac disease!”  Little did I know that I should have been one of the conference attendees.

The initial blood test that Dr. G ran on me was not the current “Celiac Panel,” as outlined on The University of Maryland Center for Celiac Research website.  Those tests include the following:

  • Total IgA

According to the American Celiac Disease Alliance:

There are also several conditions which may yield false negative antibody results. A false negative means that the patient actually has the disease, but the test result is negative. One of the conditions that may give a false negative result is Immunoglobulin A or IgA deficiency. If a patient has a low total IgA level, the antibodies may be falsely low.

  • tTG-IgA or tissue transglutaminase-IgA

According to Dr. Rodney Ford:

The tTG antibody test is a tissue damage test. tTG is a specific antibody made against muscle tissue damage in your small bowel. It is a very sensitive indicator of the small bowel damage that can be caused by the gluten in your diet. High levels of tTG mean that you might have gut damage (celiac disease). It is currently recommended that you confirm the likelihood of gut damage by having a small bowel biopsy (by endoscopy).

  • AGA-IgA or Antigliadin IgA
  • AGA-IgG or Antigliadin IgG

According to Dr. Rodney Ford:

A positive test shows that you have an immune reaction to gluten.  This might not be causing symptoms yet. Most gluten-sensitive people have a high IgG-gliadin test.

According to the American Celiac Disease Alliance (emphasis added)

If a patient’s celiac panel is only positive for antigliadin IgG, this is not highly suggestive for CELIAC DISEASE if the patient has a normal total IgA level, corrected for age. Younger children make less IgA than older children and adults. A markedly elevated antigliadin IgG, such as greater than three to four times the upper limit of normal for that lab, is highly suggestive of a condition where the gut is leakier to gluten. This can happen in food allergies, cystic fibrosis, parasitic infections, Crohn’s disease, and other types of autoimmune GI diseases. These antibodies may also be slightly elevated in individuals with no obvious disease.

Dr. G only tested me for the presence of Anti-Gliadin Antibodies, and the following results are from my April, 2005 blood test:

  • Gliadin IgG Ab (my score: 25.2, with a normal reference range of 0 – 29.9)
  • Gliadin IgA Ab (my score: 42.7, with a normal reference range of 0 – 29.9)

Based on those results alone, Dr. G gave me the diagnosis of celiac disease and did not recommend putting me through the intestinal biopsy to confirm it (although I ultimately had two intestinal biopsies and a skin biopsy before I came to terms with the truth.  I really struggled with the fact that I did not “feel sick”).

I had the celiac panel run again in September of 2009 (I get these occasionally to see “whats going on inside,” because I cannot tell when I have been “glutened”), and this time it was the current celiac panel that my doctor ordered.  The following were my results from just 8 months ago:

If you click on the photo, it will bring up a larger image.

  • Celiac tTG Ab IgA Out of Range, (my score: 37, with a normal reference range of 0 – 19)  Apparently, I had been unknowingly ingesting gluten, which only serves as further evidence (to me anyway), that just because you may not feel sick on the outside, does not mean your immune system is not reacting nonetheless.  You cannot “outgrow” celiac disease, once you have it, you have it.  Do not be fooled into thinking that if you eat gluten and do not feel sick, that you are suddenly cured, because that could not be further from the truth.

I hadn’t noticed the following statement on my blood work before, and am not sure if it is just my local lab that does this or not :

“The American Gastroenterology Association recommends that “In the primary care setting, the IgA tTG A is the most efficient single serologic test for the detection of celiac disease. Evidence indicates that the additional inclusion of IgG antigliadin antibody and IgA antigliadin is not warranted.”  Gastroenterology 2006: 131: 1977 – 1980

To identify patients with selective IgA deficiency, samples are screened using quantitative IgA, followed with tissue transglutaminase antibodies (tTGA).

Antigliadin antibodies may be performed if indicated.

So my question is this, if only 2 components of the panel are routinely tested; how many people (who would fall within the broader spectrum of gluten-sensitivity), are falling through the cracks??

I read this note on The University of Chicago Celiac Disease Center website:

Anti-gliadin antibodies (AGA-IgG and AGA-IgA) are no longer used to test for Celiac Disease due to a low level of accuracy in people who have not yet been diagnosed.

I suppose that makes sense if a physician is looking to diagnose celiac disease.  But here is another question, how long does it take for a person to be reacting to gluten, to produce villous atrophy?  I have dermatitis herpetiformis, which I am coming to realize I have had for a very long time. According to the Gluten Intolerance Group (emphasis added):

Dermatitis Herpetiformis (DH) is a chronic disease of the skin marked by groups of watery, itchy blisters. The ingestion of gluten (a protein contained in wheat, rye and barley) triggers an immune system response that deposits lgA antibodies under the top layer of skin. IgA antibodies are present in affected as well as unaffected skin. DH is a hereditary autoimmune disease linked with gluten intolerance. If you have DH and do not follow a gluten-free diet, you may develop the intestinal damage of celiac disease.  With DH, the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy than for those with only celiac disease. Both diseases are permanent and symptoms/damage will occur after consuming gluten.

I do believe that might explain my lack of digestive complaint.

Dr. Petersen talks about testing for gluten sensitivity in the following video:

I really keyed in on what Dr. Petersen said about:

Endomysial and anti-tissue transglutaminase antibodies being more “apropro” for celiac disease because they are positive when there is already a tremendous amount of destruction in the small intestine.

That statement prompted me to look closer at Sam’s blood test,

Click on the photo for an enlarged view.

which indicated a positive result for tTG- IgA, with a score of 36 (normal reference range < 20).  Sam’s intestinal biopsy came back “negative.”  It makes me wonder if there was actually zero intestinal damage but rather if the biopsies that were taken, were simply from unaffected areas of his small intestine?

Regardless, I asked Sam’s pediatric GI what I should do.  Do I allow Sam to continue eating gluten until there is enough intestinal damage to produce a positive biopsy or do I spare him from the risk of other potential celiac related complications by putting him on the gluten-free diet immediately?

“Dr. N” pulled me aside and said, “If Sam were my son, I would put him on the gluten-free diet immediately.”

So that is exactly what I did.  I believe that my job, as his mother, is to get my son to adulthood as healthy as possible.  If he wants to challenge the diagnosis later in life, then that will be his choice to make as an adult.  My villous atrophy can heal on a strict gluten-free diet, but because of my many years of undiagnosed/untreated gluten sensitivity and the related complications I now have, will be with me for the rest of my life.  All which could have been avoided had I only been properly diagnosed as a child.

I just received a copy of the Spring, 2010 issue of Celiac Disease News, from the National Digestive Diseases Information Clearinghouse.  The very first article is titled, Research Highlights Importance of Biopsy Site for Diagnosing Celiac Disease in Children. The following is an excerpt from the article:

Researchers from the faculty of medicine at Dalhousie University in Halifax, Nova Scotia, Canada, published findings from a study suggesting that biopsy sample sites should include the duodenal bulb—the section of the duodenum immediately adjacent to the stomach. Over 2 years, Mohsin Rashid, M.D., associate professor of pediatrics, and medical student Andrea MacDonald examined biopsy samples obtained from the duodenal bulb and from sites in the second or more distal—farther along—sections of the duodenum in 35 celiac disease patients ranging in age from 17 months to 18 years. Thirty-one of these children had abnormal distal biopsies and all but two also had abnormal bulb biopsies. More significantly, four children with normal distal biopsies showed effects of celiac disease in bulb biopsies.

Diagnosis of celiac disease would not have been possible in these four cases with distal duodenal biopsies only,” Rashid wrote in an article that appeared in the October 2009 issue of BMC Gastroenterology. “The optimal strategy for detecting villous changes should include biopsies not only from the distal duodenum but also from the bulb to improve the diagnostic yield,” he concluded.

See what I meant about celiac disease being a “moving target?”

I don’t know about you, but I was always taught to trust that my doctors knew everything there was to know about current medicine.  If a doctor told me something was so, I believed them and followed their advice (well, up until I was handed my CD diagnosis, it took me a while on that one!).  Because really, how would I know otherwise?  I did not go to medical school.  Since being diagnosed with CD, I have become hyper-aware of how many physicians are not up-to-date on current celiac disease research, including non-celiac gluten-sensitivity.  Just since my own diagnosis, I can cite 4 examples of inaccurate information being transmitted from a doctor to a patient (not intentionally):

1. When my mom asked her doctor to test her for celiac disease, he asked her if she had diarrhea.  When she responded “no,” he told her that she could not possibly have it, so it was pointless to test her.  My mom had to convince him to give her the blood test by mentioning that her daughter had it (her test was negative 4 years ago).

2. When I initially had Sam screened for CD at the age of 3, his tTG test came back within the normal range.  I asked Sam’s pediatrician when I should have him tested again and he told me that he would never have to be tested again because “he would never get it.”  I walked away from that appointment rather confused, because I had read otherwise.  After a little convincing,  he agreed to test Sam again at age 5 and this time his tTG test was positive.  It was neat though, after a lengthy conversation with “Dr. C,” he told me it was a valuable learning experience for him because it demonstrated that what he had learned in medical school was outdated.

3. My mom-in-law, who has Hashimoto’s Thyroiditis, asked her GI to test her for celiac disease (who also happens to be my GI).  When the test came back negative, she mentioned to our doctor that she had felt better when trialing the gluten-free diet (after she took the blood test), and if that meant she could have non-celiac gluten sensitivity?  “Dr. P” said there was no such thing as non-celiac gluten sensitivity because “gluten sensitivity = celiac disease” and her blood test was negative for CD, so her feeling better was only “in her head.”

4. After my positive skin biopsy for Dermatitis Herpetiformis, I asked my dermatologist if she knew that it was related to celiac disease and that meant strict adherence to a gluten free diet for a lifetime.  “Dr. E” replied that she had only heard that the gluten-free diet ‘could’ help some people with DH, but that Dapsone was a more effective treatment. (I declined the prescription for Dapsone).

Have you had any similar experiences?  If so, I would love to hear your story.

Incoming search terms:

  • gluten autoimmune (37)
  • anti tpo ab (28)
  • gluten and autoimmune diseases (25)
  • gluten and autoimmune disease (23)
  • autoimmune gluten (21)
  • gluten free and autoimmune disease (20)
  • antigliadin igg (16)
  • levoxyl gluten free (16)
  • gluten and autoimmune disorders (14)
  • total iga (13)

Comments

  1. Deanna says:

    Wow, that's quite a journey you've been on! I'm glad that you've been able to figure out your true diagnosis and that you've had the strength to advocate for your family.

    My celiac blood work came back negative, the only test I had was the transglut AB test. But, my doc was very supportive of assuming a gluten sensitivity based on an elimination diet and reactions to gluten.

    • Deanna,

      Did your doctor run a Total IgA in addition to the tTG-IgA test?

      • Deanna says:

        Doesn't look like it – looks like it was just the one test and my results were super low – <1.2 where the reference range is < 4.0. (which doesn't seem to correspond at all with the reference results you posted.) It also looks like my tests were in different "units" than yours (U/ml), though.

        Regardless of results, it's clear I need to avoid gluten, and I'm much happier and healthier this last 4 months.

        • Deanna,

          I am just going to post this for others that might read this comment thread and have questions.

          This is from the Celiac Disease Center at Columbia University:

          Selective IgA deficiency (SIgA deficiency)

          SIgA deficiency occurs 10 to 15 times more commonly among people with celiac disease compared to the general population [19]. Patients with SIgA deficiency will lack IgA antibodies including endomysial antibody, tTG and IgA AGA. To detect celiac disease in patients with SIgA deficiency an IgG antibody, typically IgG AGA, needs to be performed together with total IgA level. Alternatively, one may screen with IgG anti- EMA or IgG anti-tTG, though these are not widely available. Typically the patient with celiac disease and SIgA deficiency will have a positive IgG AGA and absent total IgA level. This combination should prompt a biopsy, whereas an isolated positive IgG AGA would usually not.

          You can read more here: http://www.celiacdiseasecenter.columbia.edu/C_Doc

          • Deanna says:

            All the testing options confuse the heck out of me. :) I'm overdue for a physical, so when I get around to doing that, I should mention this to her. The last thing I want to do, at this point, though, is eat gluten for another 2 weeks to redo the tests. Yuck. Although, I would guess that if I have few antibodies in general, that might just be a thing that I always have and could be tested for without testing for the gluten antibodies again….

          • I agree with you the testing! ;-)

  2. Lisa says:

    GIRL, have you ever said a mouth full. Can I just say, OMG that 0.02 TSH! My story is too long to put in this tiny box! LOL. Here is a brief outline.

    Hashi -> ThyCa -> Gluten Sensitivity

    I wonder now if I had been tested say before the cancer, would I have been able to avoid it. Or even just avoided gluten anyway.

    I was starting to have my thyroid numbers increase before the gluten thing came to play. I was worried about re-occurrence. Soon as I laid off the gluten, the numbers went right back to where they were supposed to be. I also have an antibody issue. Issue being they wont go way like they should. :-/ They have started to decline with the GF diet. So you can see how/why I was excited to find all this GF info.

    I'm listening to you preach to me though. I'm getting my kids tested very soon.

    • Oh wow, Lisa. Thyroid Cancer, so scary.

      Please know that I am not "preaching" to anyone, I am just fascinated by this disease, and the full spectrum of gluten sensitivity. I loved what Dr. Petersen said about finding the problem BEFORE it turns into celiac disease, and thus potentially saving someone from much more serious consequences. She validated the decision I made with Sam.

      Although, in regards to Sam's issue of a positive tTG and a "negative" biopsy, I am quickly learning that there may be some serious shortcomings with how biopsies are performed and tested. That will be another day's post though!

      I encourage everyone to take this post for what it is, one person's journey and the questions she is asking. I hope I provided enough credible links that people can use this post as a building block in the answers they seek.

      • Lisa says:

        Don't take offense to my use of the word "preach" Heidi. It was only meant in the sense of bringing ideas, putting ideas forth or to affect. In fact I would have never sought out this info on my own but am now glad I have come to learn it. Just secures a few things.

  3. kelly says:

    Just my 2 cents, but I didn't think it was preachy, more your experience and a heart to share what you have learned and hopefully so that people being informed will be able to make the best decisions for themselves and their families. =0)

  4. kelly says:

    YIkes, I was just trying to be encouraging that I didn't think it was preachy. I thought it was really great. I haven't had time to watch all the videos yet and didn't want to comment on what I hadn't watched. I appreciated all the info and Heidi sharing her story. Wasn't trying to offend anyone.

  5. Tai says:

    Heidi it scares me sometimes when I come on your blog and you are writing about all the things that are going through my head!! Only better!

    We had our eldest two tested yesterday. It is a blood test. The IgA serum, IgA and TTG. I am feeling uncertain, because after all I am reading I really wanted to do a stool test through enterolab to test for genetics and sensitivity. I still might. I don't want any room for doubt, even though in our home we are (now) 100% gf!!

    Liv's pedi gastro was/is amazing! She saw Liv and within two visits had it narrowed down to Celiac or another disease where parts of the colon has died. She ordered further blood tests that confirmed CD. I never knew what Liv's TTG was. She just told us it was very elevated. Her IgA was >100! It is supposed to be, according to our lab, 100 and my TTG was 89 (range according to our lab is <8). She didn't do a biopsy since those numbers are beyond high, and I had a child confirmed celiac through endoscopy. It is so frustrating, because I had issues as a child and my parents took me in to the dr.'s. I had all kinds of tests done, and never did anyone say gluten or celiac to my parents. They had no idea.
    Now we are on the road to recovery. Hoping to see some great numbers at the next lab. But still very intrigued by all levels of gluten sensitivity. How do you feel about enterolab and the stool test?

    • Tai says:

      Hey part of my reply is gone…

      Liv's IgA was greater than 100 it is supposed to be less than 17 according to our lab. Her villa are completely gone…smooth as can be in her intestine. The dr. said she didn't need pathology to confirm it (although they did). There was no doubt it was Celiac Disease. She suggested I get tested due to the fact that it is genetic and I have prediabetes at 29. I don't have any of the "predisposed" diabetes issues…and since diabetes and celiac are on the same dna chain they go hand in hand as you know.

      Anyway…that part was missing …you can see above what my numbers were. IgA greater than 100 like Liv and TTG was 89.

    • stephanie @ glutenfr says:

      Hey Tai,

      I didn't know any different at the time – I used Enterolab – but I have it on pretty good information that a better and more thorough lab exists: Kimball Genetics. http://www.kimballgenetics.com/

      I still have not tested my one daughter and when I do I am going to use them. I had my other 2 children tested by Enterolab. Kimball goes one step further on the genetic testing (in regards to celiac gene possession). Which I think is fantastic.

  6. Tai says:

    One more quick thing…I love our peditrician. She recognized something was wrong with Liv and referred us to a specialist. She also, is eager to learn about Celiac. But that is just it…she has to learn. She knows very very little about the disease. At our last visit…I was the one informing her. I hope she takes this and does learn.

    As for our family dr. My mother, aunt and cousin had to fight to get celiac tests after I was diagnosed. He still thinks it is rare and they don't have the critera…really so type 2, infertility at 25 yr old, weird skin rashes, IBS, constipation, bloating, irritability, fatique, arthitis…not any of the criteria? Dr.'s need a WAKE UP CALL!!!

  7. Maggie says:

    Heidi – Wow, did you collapse after writing this amazing post? Woah! Thanks for sharing all of this information. Who knew you were so Science-y? Haha. I've learned so much from this single post. Thank you!

    • GlutenFreeMom says:

      Maggie,

      I have one more post to make as a follow up and then I might be done with the "research" posts for a while… it is EXHAUSTING! :-)

  8. stephanie @ glutenfr says:

    Heidi!

    You have absolutely blown me away with this article. I loved it :) Thank you so much for all your hard work and research putting this together. I learned so very much reading about your journey.

    We found out that celiac is present in our family through my son. He was extremely ill as an infant. When I got tested, then my parents – it sort of blew the lid off things. Our house has been a GF zone for 3 years. And my siblings have pretty much gone GF. But, no one in my extended family really wants to accept that it's there. Ignorance is bliss, right? I am so concerned for their health – and scared for them. There is so much cancer, diabetes, heart disease, rheumataoid arthritis, thyroid, MS, etc. in my family. It's lurking.

    I applaud you for the sentiment that it is essential to eliminate gluten as a precautionary measure. I believe we as parents owe it to our children to use that powerful knowledge and help them stay healthy. Sad story: My neighbor's 6-year-old daughter was just diagnosed with juvenile diabetes (she was asymptomatic celiac). Her little body. Oh, it just broke my heart. They had no idea she was so sick.

    Have a wonderful weekend

    Stephanie

    • GlutenFreeMom says:

      Hi Stephanie!

      Thank you very much. I am glad you found some helpful information. So are you and your parents also confirmed celiacs?

      I wanted to share what I have been learning, because in the 5 years that I have been on this journey, I have had so many questions that I could never seem to find the answers to from my physicians or online. My Google searches would either pull up highly technical medical research articles, or I would find nothing at all. I decided to email an expert in the field, Dr. Ron Hoggan (author of Dangerous Grains), and he has been graciously answering the questions I have been seeking. I will be posting a follow up to this post early next week in regards to Sam's positive tTG test and "negative" biopsy. The possible reasons for his conflicting test results are disturbing to say the least.

      I understand the "ignorance is bliss" phenomenon all too well, I used to prescribe to that theory myself! However, today I am much more of the mindframe, "what you don't know, might kill you."

      My parents, sisters and extended family prefer living in the dark as well, even with a family history of depression, canker sores, migraines, anemia, ADD. thyroid disease, acne, ezcema, stomach cancer and Non-Hodgkin's lymphoma. The latter taking my uncle's life just 9 days after he was diagnosed with it. I too, am deeply concerned for their health but whenever I try to talk about it with them, it either falls on deaf ears or they get angry with me. I am not even sure if anyone in my family even reads my blog, but that is why I want to "pool" all of this information into one spot, in the hopes that one day they may actually read it and connect their own dots and get tested before its too late.

      What kills my heart, is that there is a "simple" solution. Yes, I know that the gluten-free lifestyle can be tricky or inconvenient at times, but really, is it more difficult than daily medication, insulin injections, chemotherapy/radiation, surgery, etc., etc.?

      Your neighbor's daughter is the exact reason I would not take the chance with Sam. For little kiddos especially, they are growing and they need every single nutrient they can get. Villous atrophy can heal if caught early enough, but insulin is forever. Taking thyroid medication everyday is my constant reminder of what didn't have to be, if they had only known.

      I hope you have a wonderful weekend too!! :-D

      • stephanie @ glutenfr says:

        Heidi – we are really on the same wavelength on this. People consistently tell me how sorry they feel for me – that because we suffer from multiple food allergies – we can't eat out at restaurants, etc. I always say to them: if not being able to go eat at a restaurant is the worst of my problems then there is seriously something wrong in the world !!! :)

        I feel extremely blessed that we have a disease that requires absolutely no medication. It is not life threatening, it is not terminal. To echo your sentiment – there is a "simple" solution.

        I remember one of the first things my celiac doctor told me: she said, "you have to grieve over this – allow yourself to grieve. Once you've grieved, you've accepted it. Once you've accepted it – you can move on with your life" I really do believe it was a grieving process. To be honest – more my for my kids than for me – funny how being a mom changes you! And I believe it is this step that prevents people from being able to cope with the diagnosis. We're all guilty of it – we never believe this sort of things can happen to us personally!

        I get some flack too – from my extended family. The biggest one I hear is this: why would you EVER go through so much trouble "just in case" something might happen to the kids? The only way I can make some semblance of an effort to communicate the complex emotions it conjures is this: how could I ever live with myself if (due to my inaction) my child was forced to live with a potentially critical life-threatening disease? How could any parent live with that?

        So, my son is confirmed celiac. Two daughters are not. Although genetically speaking they have the same exact genes as my son. My husband got tested and came back negative – which I think is a big fat FALSE negative. And I am double gene gluten sensitive. It makes me sick as a dog. I have struggled my whole life with chronic fatigue, migraines, joint pain, thyroid, etc etc. I never knew how sick I was until I gave it up. Even though it has been such a journey for us – with my son being so sick for so long – I am thankful each day that it happened. At least now we KNOW. And we feel so empowered by that knowledge.

        • Stephanie,

          I so agree with you on the period of grief! I have long thought that I got stuck in the denial phase of the "5 Stages of Grief'," but as Dr. Hoggan pointed out to me, "Denial is also a part of addiction." After giving it some thought and reading up on the opioid peptides in gluten… it makes a lot of sense to me. Just like people with sugar addiction, etc., you really can go through a withdrawal period (at least I did), when you first go gluten-free (although this might be more the case if you actually feel sick when first diagnosed and going on the GF diet provides relief from pain). Because I occasionally succumbed to my cravings for gluten foods for 3 years after my diagnosis, I did not realize just how sick I was. Once I successfully got off and I began to heal, it was so obvious that I had never felt "well."

          When it came to Sam's conflicting diagnosis, I was paralyzed as to what I should do at first. When my mom, sisters, and friends offered their opinions, like "Why would you do that to him when he isn't a biopsy confirmed celiac yet?" "Poor Sam, he will never get to have a McDonald's Happy Meal, pizza, cake, etc., etc." Those comments made me feel horrible and I admit I had some doubt at first. Then I dug deeper into the comments people made and realized that the gluten-foods they were referring to, were just plain crap. The very foods I grew up on; highly processed, high fat, high sugar and high gluten. Why was I feeling bad about the opportunity to give Sam a much healthier diet and overall life? I mean really, is that how dependent are we as a country on convenience and fast foods, that one's "quality of life" is defined by it?

          Growing up, my mom always wondered out loud, "Why are you so sickly? I just don't understand what happened." What's funny about that now? I am the healthiest of all of them, even though I still battle my gluten sensitivity "side kick" diseases! Yet they would all rather continue feeling bad, going to the doctor to treat the symptoms, spend their money on rising healthcare costs, etc., than to get tested for gluten sensitivity. What kills me the most? My dad's brother died from Non-Hodgkin's Lymphoma a couple of years ago. He passed away just 9 days after his diagnosed so there was not enough time for me to convince anyone to have him tested for celiac disease (for family tree purposes). My dad and my aunt have both stated that they believe he had it due to the chronic health complaints my uncle had over his life, including asthma so severe as a child that he had to leave his parents and brothers/sisters to go live with relatives in Arizona for a while. My aunt has stated that gluten makes her feel bad so she doesn't eat it "often." My dad, has battled canker sores, arthritis, joint pain, muscles spasms, ADD, depression, GI complaint, acne, fatigue among other symptoms throughout his life, yet he will not get tested.

          Our journey has really opened my eyes to so many things and I am thankful as well that it happened when it did and not 20 years from now, after Sam is facing other serious health issues that could have been avoided simply by changing his food. Really, it's just food. :-)

  9. Linda says:

    You have been through a lot, and I hope this post is helpful to many others. I appreciate the videos. I'll come back to watch more. I have Hashimoto's and am reading a book that addresses the underlying autoimmune response. There is much to learn. Just the other day a friend said something like "It would be nice if you had a doctor who knew what you needed rather than you always having to figure things out for yourself." Thankfully, doctors are becoming better informed about celiac disease. Thanks for the great post.

    • Linda,

      It's funny, this post only covers about half of my medical "oddities" that I believe are related to undiagnosed/untreated gluten sensitivity! I have been acquiring some my medical records from my childhood and have sent them off to an expert in the field to see if he can help me put more pieces together. I really hope that my journey can help those that are still stuck with the belief that you have to have GI symptoms in order to have a problem with gluten, that could not be more incorrect.

      Have you read Dr. Ron Hoggan's book "Dangerous Grains?" I am reading it now and it has literally taken my breath away. When I am finished, I am going to do a post on it and personally host a giveaway of his book. I believe it is that important. I am also buying copies of his book to give to several of our physicians.

    • Suzy says:

      Linda-

      Would you mind sharing what book you were reading in your post? I too have Hashimoto's and now am being tested for Celiac, etc. due to a high TPO test. I'm fascinated by the whole autoimmune response and how it all links together. Thanks you.

  10. CC says:

    I must say this again, thank you so much for your writing. This is so amazingly informative. I have been so frustrated with this whole testing malarkey. Last May, I was very very sick with bronchitis. I couldn't eat, had a high fever, etc. Well, after a few days of not eating, I felt fantastic. This made me go "hmmmmm". I started adding food into my diet, I had a piece of bread, some applesauce, and a banana. I have always had "stomachaches" after I ate, but this was awful–the worst ever. I started experimenting with foods and found that when I ate bread/pasta, I got sick. I started a food journal chronicling what I ate and my symptoms and called my doctor. I got my appointment about 2 weeks later. I told her my symptoms and shared my food journal and she immediately ordered the blood test to test for Celiac's. I had a blood test done after not eating bread for about 4 weeks. I didn't find out until after that this might cause problems with the test. So, when it came back negative, my doctor said I "must have IBS with a gluten sensitivity". When I asked about the not eating gluten, she said that if I felt it necessary I could eat gluten for about 2 weeks and come back and get tested again. I decided it was just not worth the pain. I may change that later, but I can't do that to myself right now.

    The changes have been amazing in my life since I began this completely gluten free journey. For the first time in my life I have a flat stomach. I've never had a flat stomach(not even as a kid)! I've always been bloated, and never knew it was possible for me to be any different. No more stomach pains–I can sleep for 8 hours without complete exhaustion–and I've lost 35 pounds! I am so grateful for that bout of bronchitis.

    Sorry this is so long–thanks for your writing, again. It is good to have some affirmation that I am not alone in my frustrations!

  11. Kim says:

    Long story coming but should be helpful!!!!!!!!!

    My son’s story began about 5 years ago. He had just turned 1 and barely weighed 18 pounds. I had suspected something had been going on for months. He seemed so ill and frail at the time, yet doctors always had one excuse after another for his lethargy, paleness, distended belly, stomach aches, dark circles under his eyes…. (I could go on and on, but I will digress). I spent hours doing my own research and concluded that there was a strong link between his symptoms and his gluten consumption. I approached his GI doctors (supposedly some of the best at our renown Children’s Hospital here) and they continued to tell me over and over that he was just a picky eater.

    I was so frustrated. I started pushing for further blood work and was able to convince his doctor to run a Comprehensive Metabolic Panel in addition to a CBC w/diff w/plt. When his results came back, all of a sudden his doctor’s stopped look ing at me as the crazy hypochondriac of a mother. However, it was not Celiac Disease at this point that they thought he had.

    Many of his numbers were very askew, but the one number that stopped them dead was his Alkaline Phosphatase levels. They had come back at a level of 5050 IU/L. Here is the scary part: the normal range for a child at his age is: 104-345 IU/L. The lab actually retested the results 3 times to make sure they were not errors.

    From Lab Tests Online (http://www.labtestsonline.org/understanding/analytes/alp/test.html)

    “The alkaline phosphatase test (ALP) is used to help detect liver disease or bone disorders. In conditions affecting the liver, damaged liver cells release increased amounts of ALP into the blood. This test is often used to detect blocked bile ducts because ALP is especially high in the edges of cells that join to form bile ducts. If one or more of them are obstructed, for example by a tumor, then blood levels of ALP will often be high.

    Any condition that affects bone growth or causes increased activity of bone cells can affect ALP levels in the blood. An ALP test may be used, for example, to detect cancers that have spread to the bone or to help diagnose Paget's disease. This test may also sometimes be used to monitor treatment of Paget's disease or other bone conditions, such as vitamin D deficiency.

    If ALP results are increased but it is not clear whether this is due to liver or bone disease, then tests for ALP isoenzyme tests may be done to determine the cause. A GGT test and/or a test for 5'-nucleotidase may also be done to differentiate between liver and bone disease. GGT and 5'-nucleotidase levels are increased in liver disease but not bone disorders.”

    All of a sudden, Celiac Disease was the least of our worries as the doctors started talking about the possibilities of bone or liver cancer. I will not go into all of the details of that time period, mainly for lack of space here, but needless to say, it was a sickening experience. My poor little 15 month old was put through so much blood work and endless tests. After ruling out certain cancers, they started to investigate all sorts of bone and muscular disorders. Everything continued to come up negative.

    And yet, there was still this nagging feeling inside of me that Celiac Disease could still be a possible cause behind all of his abnormal results. I already knew enough about it at this point to believe that Celiac Disease can mess with everything in your body because it destroys your ability to absorb nutrients. And as I researched more, I found many medical studies pointing to Alkaline Phosphatase levels as an indicator of possible Celiac Disease. I literally had to beg them again to do another Celiac Panel AND run the genetic tests for the genetic marker for the disease. This time his Panel came back, in the doctor’s words, as “Inconclusive”. But he did, in fact, have one of the genetic markers for it (HLA-DQ2). Yet still the doctors did not think that this had anything to do with his insane lab results.

    They were WRONG! I immediately went home, took him off gluten, and then watched my son live life again!! He became the toddler that I knew had been hiding behind those dark-circled eyes. His energy came bouncing back (literally) and his appetite, weight, height, and coloring just took off. He got back his sparkle.

    And, 3 (gluten free) months later, when we did his next round of blood work, his Alkaline Phosphatase levels were down to 576 IU/L. And 2 more (gluten free) months later, they were down into the normal range at 319 IU/L. His intestines were starting to heal! He was finally absorbing his nutrients again. And, after meeting with a naturopathic doctor and going over everything with her, we finally concluded that his Vitamin D levels had been so low due to lack of nutrient absorption – resulting in the horrible levels. (Side note-he now gets major Vitamin D supplements daily)

    The funny thing is that his GI doctors never officially diagnosed him. It was not until about 1 &frac12; years ago, when he woke up vomiting on a couple of different occasions, that my pediatrician decided to order an EEG for him. We were absolutely floored when the results came back showing that he was having seizure activity in his sleep. After a nerve-wracking MRI and a CAT scan to ensure that there was not a brain tumor that was possibly causing this seizure activity, his wonderful neurologist finally concluded that he had a typical EEG pattern of a patient with Celiac Disease. This pattern is actually caused by Calcium Deposits in the brain that occur over time from the leaking of nutrients (such as Calcium) into the blood from the damaged intestines. She told us that his MRI showed that these were old deposits and that he was on the way to healing and would eventually have no more seizure activity. I just find it so strange that it was his neurologist that actually gave us the final diagnosis.

    Today, he is doing awesome. He is a super healthy, happy, rarely sick, full of energy, too-smart-for-his-own-good almost 6 year old. Our entire family is totally gluten free (and now my husband also has an official diagnosis of Celiac Disease).

    The bottom line is that you have to fight for what your gut feelings are. You have to fight for yourself and fight for your kids. We are just on the cusp of big developments in Celiac Research and hopefully stories like these will not be the norm anymore.

    • Hi Kim,

      Rude et al have repeatedly reported magnesium deficiency as a factor in celiac related calcium metabolism errors. It might be useful to look into this issue, or even try supplementing with Mg.

      The way I arrived at the correct dosage for myself is by increasing my Mg supplements by 50 mg. each day unitl I developed diarrhea. I cut back by 50 mg. and that is the dosage I take. With your son, you might want to start at smaller doses.

      The magnesium supplements have had an enormously positive impact on my life.

      I believe that many physicians don't keep up with celiac disease because they view it as a trivial food allergy and do not believe it is a very meaningful factor in "more important" findings such as abnormal liver enzymes. Many of them imagine that reactions to gluten will be obvious to parents and/or those with symptoms. I have conversed with many physicians who seem to think that such minor maladies are petty and that it is far beneath their "expert" standing to pursue testing for such benign and inconvenient minor complaints.

      best wishes,

      Ron

      co-author: Dangerous Grains ISBN: 978158333-129-3 http://www.dangerousgrains.com

      author: The Iron Edge: a complete guide for meeting your iron needs ISBN: 978-0-9736284-4-9 http://tiny.cc/ironedge
      author: Smarten Up! ISBN: 978-0-9736284-3-2 http://www.smartenup.info

  12. Renee says:

    Hi there!

    I am on a journey of my own, I have several people in my family who follow gluten free for fibromyalgia, infertility,and Dermatitis Herpataformitis. I have never shown symptoms myself that I could pinpoint to gluten. However, I am extremely fatigued and sometimes my joints ache, I also get frequent headaches. I had bloodwork done several times and I am not sure the Drs ordered everything necessary. I did have a positive IGA GLIADIN ANTIBODY RESULTS 17 REF RANGE POSITIVE FOR >17, IMMUNOGLOBULIN A * 331 [69-309] mg/dl IMMUNOGLOBULIN G 963 [613-1295] mg/dl IMMUNOGLOBULIN M 104 [53-334] mg/dl TISSUE TRANSGLUTAMIN <3 (NOTE)

    VALUE EXPLANATION OF TEST RESULTS

    8 POSITIVE

    GLIADIN IgA AB * 25 Q2

    Reference range: SEE COMMENT

    Unit: U/mL

    (NOTE)

    VALUE EXPLANATION OF TEST RESULTS

    17 POSITIVE

    So Ultimately my IGA is Positive! What the heck does that mean?? I have been researching for a while to find out if that is indicitive of Celiac? Would you happen to know? Thanks for any help you can give. My doctors seem to dismiss it. However, I dont like knowing I have elevated labs and no idea why. Thanks again Renee

    • Hi Renee,

      I am not qualified to interpret your test results for you, but I want to recommend a book that I am currently reading by Dr. Ron Hoggan called Dangerous Grains: http://www.amazon.com/Dangerous-Grains-Gluten-Cer

      In the book, specifically on pages 67-72, he talks about blood tests and what they mean. I have found it to be very helpful in understanding my own blood results.

      You might also check to see if the book is available at your local library. I have been so blown away by this book, that in the near future I am going to personally buy 5 copies to do a giveaway on my blog.

  13. Kim says:

    Hi Dr. Hoggan

    Thank you so much for responding to my journey with my son! I am so glad that you brought up the importance of the Magnesium supplementation! This entire experience prompted me to get a Master's in Holistic Nutrition, and through my studies I learned how devastating a Mg deficiency can be to us. I have my son (and the entire family) on a highly absorbable Magnesium supplement and the health benefits that we have seen from it have been amazing.

    I wish that more physicians would understand how autoimmune diseases and gluten sensitivities can cause such damage and permeability to the intestinal wall, leading to drastic nutrient deficiencies. They are always quick to cover up the symptoms with easy fixes, without taking time to truly address the issue at the heart of many conditions today. Intestinal healing is unfortunately entirely too underestimated, in my eyes!

    I also would like to let you know that I used your amazing book as a resource in many of my courses. It is an invaluable tool that I believe every doctor should read! I think Heidi has the perfect idea to give it to her doctors as gifts!

    Thank you again for taking the time to comment on our families experience. Strange as it may sound to some, I actually believe that it was the best thing to ever happen to my family.

    Best Regards,

    Kim Maes
    http://www.cookitallergyfree.com

  14. PATTY says:

    My 12 year old dau. has had some stomach problems along with headaches and upper thigh leg aches. Never had bowels issues or vomiting.Our GI dr did 3 different biopsy,esoph,stom. wall,small intest. They all came out negative.He even said her belly looked like a babies.We had 2 different blood test and he said the one level was 53 and should be below 20.Well she also has a rash,no blisters.Took her to our derm. and with my GI doc. saying she had CD,our derm. did a biopsy for DH rash people get with CD,but that came out neg. also.She takes some meds for stomach spasams which works great.Does anyone have other suggestions?

  15. Suzy says:

    I stumbled across this website this morning after a visit to my dr. I have had hypothyroid-specifically, Hashimoto's, for 10 years. My regular thryroid tests have been "normal" for some time and I have been regulated and on the same level of synthroid for abouut 6 years. I feel great and have even lost 20 pounds the past 2 years.

    I recently had a physical and the TPO test was given and came back around 300. My dr. is suggesting a gluten free diet (she also ordered a celiac panel). I'm shocked by this because I feel wonderful as I mentioned above. My question is, because I have Hashimoto's, could the TPO test that came back at 300, be normal for me since I have Hashimoto's, but just not normal in a typical person. The suggestion of eliminating gluten really through me for a loop today and I'm wondering if my "normal" is just another person's "high". Obviously, overwhelmed at the thought of embracing gluten free. Also, wondering if I should pursue with my endocrinologist further instead of the PA…any insight anyone has to these levels etc. would be appreciated!

    • Hi Suzy!

      Well, I am not a doctor so I really can't say anything about why your TPO level is high (I just know that it is indicative of Autoimmune Thyroid Disease: Graves' and Hashimoto's).

      As far as the gluten-free recommendation, I can certainly understand why your dr. recommended it (but getting the celiac panel first was definitely a good thing). Celiac, like Graves' and Hashimoto's is an autoimmune condition and once a person has one autoimmune disorder, the odds of contracting another one is greatly increased (I now have 3 autoimmune conditions). I recently read a wonderful explanation about how gluten plays a powerful role in autoimmune disease and I am going to give you a direct quote from an expert in the field of celiac and gluten sensitivity. The following is from the book titled, "Cereal Killers: Celiac Disease and Gluten-Free from A o Z" by Dr. Ron Hoggan, Ed.D. and Scott Adams, founder of Celiac.com.

      Untreated celiac disease carries an elevated risk for a wide variety of autoimmune diseases. The most likely cause of this predisposition to additional autoimmune disease is a condition sometimes referred to as 'leaky gut syndrome.' We know that gluten causes intestinal damage. We also know that this damage allows large undigested and partly digested proteins to leak into the bloodstream through the damaged intestinal wall. This leakage results in immune system production of antibodies to attack these foreign proteins as if they were invading microbes. The result is the production of a huge variety of selective antibodies, and each type recognizes a particular short chain of amino acids located somewhere in the protein's structure. Unfortunately, our own tissues can contain very similar or identical sequences of amino acids. Hence, by a process called molecular mimicry, we are producing antibodies that attack both the foreign food proteins that are leaked into our blood stream through the damaged intestinal wall, and similar amino acid sequences in our own tissues, often resulting in an autoimmune disease.

      I hope that explanation makes sense, I would love to hear how your test results come back (I was shocked by my own celiac diagnosis, I had felt fine too, and did not have any of the classic symptoms of CD, but I still had it nonetheless).

      All the best,
      Heidi

  16. LeAnne says:

    Thank you so much for posting this information. I've had hypothyroid since I was 8 years old and have been having other symptoms for years. After my second son was born 2 years ago, my health has deteriorated further and more rapidly. I've been gluten free for 9 days now and I don't know if I've ever felt this good. My symptoms are all fading and I couldn't be happier.

    You've helped to change my life forever.

    Thanks again,

    LeAnne

    • LeAnne,

      That is AWESOME news!!! To quote my friend Shauna Ahern (http://glutenfreegirl.blogspot.com/2005/05/diagnosis.html):

      "If I feel this good after ten days, what am I going to feel like in a year? It’s possible that I have never really met myself."

      I think the great majority of us feel this way, we never realized just how bad we felt before until we finally began to feel great for the first time in our lives…I missed so much, but I am more than making up for it now! :-D

      xo,
      Heidi

  17. Anita says:

    Our ped. GI is stumped. Our daughter, age 12, was referred b/c of lack of growth. No GI or derm. symptoms. Her general ped. did a "Celiac panes", which was all negative. However the GI noticed that tTG IgA was not done. The result came back a whopping 66. This was followed by a endoscopy and colonoscopy, which were both normal. A follow-up Celiac panel a month later was performed and this time her tTg-IgA was less than 0.3 and the rest is all very low, as well. Should we do another tTG in a few months and then decide about the gluten-free diet or begin a trial immediately? Thanks for any advice.

  18. Sarah E says:

    Six years ago I was having a hard time getting pregnant. My dad said I was just nervous and I probably had IBS. A health magazine I was reading said, IBS doesn't exist, it is Either Celiac, Crohns, or a food allergy. It said to try an elimination diet and the one that made the most sense was to avoid wheat: I felt great and I got pregnant soon after. Now that I have been gluten-free for an extended period of time, I seem to be even more sensitive to gluten contamination. I have tried gluten-ease and other digestive aids but in the evening my allergic reaction makes sleeping difficult due to an irritated bottom and itchy skin. So misserable. I'm not sure what to do next.

    • Mary Beth says:

      Hi Sarah -

      Other than cooking all of your own fresh/clean food to avoid any gluten contamination, I would suggest high amounts of probiotics. They help put the healthy bacteria in your gut that builds up your immune system.

      Just a suggestion from something that has worked well for me :) Good luck!!

  19. Mary Beth says:

    I just read your blog and it could have been, verbatim, my story. It is odd to see someone who has had such an identical journey to my own. My saving grace came through integrative medicine and nutrition, but not before the damage had been done and I opted for my thyroid to be removed. I view this as the biggest mistake of my life, and wish I'd known then what I know now…very often Graves Disease can be managed through nutrition (gluten free being part of that). Thanks for sharing and hopefully others will read your story and not have to go through what we have!

  20. laurie says:

    i am on a mission myself. i was diagnosed last year 4/2010 with celiac. i had the biopsy. now 11/2011 i have abnormal thyroid test. my tsh is 0.021 and my t-4 is 2.09. i am scheduled for a nuclear thyroid scan tomorrow. can anyone tell me waht my numbers mean? i am 40yr female. my f/u bloodwork for CD has been normal the last two times. thanks for ANY help.

  21. MomofGrace says:

    Hi, I am very thankful for your article. I have a daughter who was diagnosed at 3 with clear autoimmune disease. After years, we do not know specifically what she has. She does improve, but not completely on a gf diet. Gluten triggers tummy issues. She was already gf when we had the panel done at 7 and it was negative. She is HLA-B27 positive, and has three times the normal amounts of Anti-CBiR1 and P-ANCA. She recently showed inflammation in her left eye. We are on watch for 4 weeks to se what happens with that. No one can tell us what it all means or how to really help her. She is 8 now. The MDs prescribe steroids and methotrexate – neither of which has stopped her symptoms. There is something in the protein folding process that causes this, but with her removing some proteins improves her symptoms to some degree, but doesn't totally fix it. In time, we will find that link between gluten, proteins and autoimmune disease. Until then, if anyone has any ideas out there, please share. Thank you again for putting this information out there.

  22. Tammy says:

    I happened upon your cereal post and commented on that earlier. Now I’ve been reading on your site some more. It makes sense what you’re saying about inadvertently you must be eating some gluten since your test is still out of range. That goes along with what I’ve been reading that Corn and Rice are not gluten free (I’ll post again the numbers I’ve found- Corn has about 2.2g gluten per 100g, Rice has about .13g gluten per 100g vs Wheat has about 9g gluten per 100g). So maybe the corn or whatever is enough to raise the numbers. I also found those videos you linked to very interesting. I found a doctor local to me that runs the Cyrex tests for all the gluten aspect including the cross reactive bit. I am planning on getting tested!

  23. Tre_sorelle says:

    I was wondering if gluten is getting in your system via any thyroid medications? I was recently diagnosed with Celiac and have Hashimoto’s. I have to take Synthroid which I recently found out it is in “cannot claim GF status” so you could be getting some from that. I’m going to ask my dr about Levoxyl since that is the same medicine but is guaranteed GF. Great site and thank you for all of the info for starting a GF lifestyle!

  24. Monica says:

    Thanks Heidi. We’re just beginning our quest for answers regarding my 14-year-old twins; some evidence of autoimmune-related symptoms, and so far a neg celiac & normal IgA test for my son, but I’ve had enough bad advice from doctors in the past few years to make me question everything. I don’t know if going gluten free will be helpful or necessary, but I appreciate reading about your interactions with your doctors and what things we should be on the lookout for — thanks!

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