What your doctor may possibly be reading about Celiac Disease

medicine_and_Stethoscope

I was at a work function recently and I met a new physician. She noticed that I was not eating any of the food from the dinner buffet and she asked me why. I told her that I have Celiac Disease and she asked me, “What is Celiac Disease?” It took me a minute to respond because I was so taken aback by the question. When I responded that I cannot eat gluten, she asked me, “What foods is gluten found in?”  I went back to the basics in my explanation.

This encounter came about a month or two after I had another doctor ask me questions about my “gluten allergy” and whether or not I ever “cheat” on my diet. He told me that one of his relatives has Celiac Disease, but cheats all of the time.

That encounter came about 6 months after I was told by another M.D. that all Celiacs cheat on the gluten free diet because it is too difficult to follow. He shared with me that he has never met a patient who has been successful at eating gluten-free.

So, although I have not picked up a copy of “Harrison’s Principles of Internal Medicine” since medical school, as I am in a very different field, I marched into the library and began to read the 17th edition. Two of the 2500+ pages were devoted to “Celiac Sprue” (that is what it is called in this book). This is probably the last big, clunky edition of Harrison’s that many MDs have sitting in their offices for reference, as since then it has been widely available online.

Here are some of the things which I read (and what other doctors and practitioners may also be reading):

-Celiac disease is a common cause of malabsorption (true)

-it occurs in up to 1 in 113 people (true)

-although the cause is unknown, it is likely due to a combination of genetic, environmental, and immune factors (true)

-the hallmark findings are an abnormal small-intestinal biopsy showing villous blunting (photos of biopsies are shown) and response to a gluten-free diet (true)

-it may develop at any time during life (true)

-symptoms can come and go for years and years before diagnosis (true)

-symptoms include diarrhea, fatty stools, weight loss, nutrient deficiencies, anemia, bone disease, and/or iron deficiency anemia (true-but no discussion of all of the other symptoms and problems
which we now know celiac disease is associated with, like infertility, thyroid disease, joint pains, rashes, nerve inflammation, oral ulcers, ataxia, osteoporosis, etc.)

-it is associated with ingestion of gliadin, a protein component of gluten in wheat, rye, and barley (true-but no mention of oats often being a culprit as well due to heavy contamination with gluten)

-patients often have abnormally high levels of certain antibodies, such as IgA antigliadin, IgA endomysial, and IgA anti-TTG (true)

-10% of family members of celiacs may also be affected (true)

-Almost all patients are HLA-DQ2 positive. Absence of HLA-DQ2 excludes Celiac Disease (not true-we now know that about 8% of celiacs are HLA-DQ8 positive, and that a small number may actually not have either of the 2 main celiac genes).

-A small intestinal biopsy is required for diagnosis (this is not always the case anymore, a lot of people are diagnosed based on lab results, family history, and response to the GF diet; diagnostic
criteria are being revised)

-the most common cause of continued symptoms and lack of intestinal healing is continued ingestion of gluten (true, but the role other food intolerances, such as lactose intolerance, are not discussed)

-associated diseases include dermatitis herpetiformis, type 1 diabetes, and IgA deficiency (true-but no mention of all of the other problems which I discussed earlier)

-the most important complication is the development of cancers, like lymphoma (true)

Things which I am surprised were not mentioned in this textbook:
-that Celiac Disease is an autoimmune disorder
-that Celiac Disease can present without any gastrointestinal symptoms or anemia; the concept of “atypical” Celiac Disease
-that patients with Celiac Disease require follow-up testing, nutritional counseling, testing for bone density, vitamin levels, etc.
-that HLA-DQ8 is associated with the disease

This edition in my library was written in 2008. There was a more recent, 18th edition of the textbook, published in 2012, which I was able to access online. I was optimistic that it would
be much more up-to-date, which it was to a degree. There was a discussion of DQ8 as a genetic
marker. It also included the following very important statement:

“A much larger number of individuals have manifestations that are not obviously related to intestinal malabsorption, e.g., anemia, osteopenia, infertility, neurologic symptoms (“atypical celiac disease”); while an even larger group are essentially asymptomatic though with abnormal small intestinal histopathology and serologies and are referred to as “silent’ celiac disease.”

The problem is that this is very new publication, and if MDs are using the 2008 (or older) edition of the textbook, they are not going to be seeing this. A lot of younger physicians are using an online resource called “Up to Date,” which is continually updated and has all of the newer information on Celiac which seemed to be lacking in the textbook.  There is also a wonderful section on Celiac Disease in “Up to Date” for patients and their families, which I hope to share soon.

Reviewing the internal medicine textbook, in conjunction with my recent interactions with other medical providers, reminded me that we all need to work together to continue to educate our families, friends, doctors, nurses, teachers, neighbors, etc. about Celiac Disease. I am trying to do my part. Will you help me?

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11 thoughts on “What your doctor may possibly be reading about Celiac Disease

    1. Jess Post author

      Thanks for reading Dana! What I did not mention in my post is that the 1st physician is actually a neurologist, and Celiac Disease is currently the most common cause of ataxia (trouble with balance and coordination) and the 3rd most common cause of neuropathy (nerve inflammation leading to numbness and tingling). It makes me so concerned about all of the Celiacs who she has likely seen in her practice and missed! Hope you and your family have a great weekend! Jess

  1. Amy Z

    I’m not a celiac patient, but I choose not to eat dairy, soy, or grains. People often express shock at this, and ask me “What’s left?!?” and I answer “Ummm…everything else?” Can’t say I’ve felt deprived since adopting this style of eating.

    I find it surprising that any marginally well informed person wouldn’t know what celiac disease is (at least in a rudimentary way), and even more so that a neurologist would know so little about it. What a shame.

    1. Jess Post author

      Hi Amy,
      I agree that it is a shame, and I wish that it wasn’t true, but it really did happen.
      I am trying to be as open as possible with my journey to diagnosis and everything that has happened afterwards because it’s became clear to me that Celiac Disease (and non celiac gluten sensitivity) is a really under-recognized and misunderstood disease.
      Also, I love your reply when people ask you what you eat…I will have to try that one! My favorite is when people learn that I can’t eat gluten and then tell me, “I would rather die than have to give up wheat!” It’s not helpful! If anyone else is reading this comment, please do not tell your Celiac friends and family that you would rather die than be in their shoes!
      Thanks for reading Amy!
      Jess

  2. Paula @CeliacCorner

    Thank you for your important research on this. Just 2 of 2500 pages devoted to celiac, astonishing – certainly could explain why celiac is not often the first diagnosis that comes to the mind of our PCPs, Neurologists, etc. Heck, it wasn’t the first diagnosis that came to my Gastroenterologist’s mind! Indeed, there is still so much more awareness to be spread. So glad you are “enlightening” other medical professionals, whether at the buffet table or wherever, the info could one day save one of their patient’s lives …

    1. Jess Post author

      I agree Paula. It is definitely great to be able to share information and collaborate here on the Internet. I can’t even imagine going through this and trying to figure things about 20 or 30 years ago, I am pretty sure that I’d still be walking around feeling like garbage all of the time from my “I.B.S.”
      Also, I love your page and the info which you are sharing on Facebook. Thank you for helping all of us on this journey!
      Jess

          1. Jess Post author

            Hi Paula,
            Thanks for your welcome! It has been an amazing experience to be able to interact with so many other Celiacs who are doing phenomenal work to increase awareness and share their stories. I feel honored to be a part of the Celiac blogging community!
            Jess

  3. Jane

    Hi – I just found your site. It is great to see information from someone who is both an MD and has Celiac.

    I was interested to read this in your discussion of “what your doctor may be reading”: -the most common cause of continued symptoms and lack of intestinal healing is continued ingestion of gluten (true, but the role other food intolerances, such as lactose intolerance, are not discussed)

    My son was diagnosed last spring and has been on a very strict GF diet since then. He was doing better for a couple of months, but over the past two months has been quite ill. His recent tTG showed transglutamase level of 700, compared to 80 when he was diagnosed. We are being told this means there is hidden gluten in his diet, but I am very mystified because despite checking and re-checking I cannot figure out where it could be coming from.

    I have of course been reading on line about lactose and fructose intolerances, about hidden gluten in other grains, and about the idea of “cross-reactive” foods, as well as much about the need for intestinal healing which can complicate matters. I am curious as to your views on these things. We are desperate to help our son, but not wanting to do anything that does not have a sound scientific basis. At the same time, I do not feel like I am necessarily getting the whole story from the doctor. The initial message was that once you go GF, things will be fine (eventually). But the pattern my son is experiencing does not fit that model, and I don’t feel like I am getting satisfactory answers about why.

    Thank so much for this informative blog.

    1. Jess Post author

      Hi Jane,
      I am really sorry to hear about what your son is going through and that he his health has been declining after an initial improvement on the gluten free diet. How old is he?
      I come from a traditional medical-based background, so I am not well-versed in the theories floating around about cross-reactive foods interfering with healing in celiac disease. That being said, I was fortunate to be able to attend the entire International Celiac Disease Symposium (ICDS) in Chicago this past September, and according to the presenters there, the only foods that we need to avoid are wheat, barley, rye, and non-GF oats. They stated that all other foods, including grains, are safe and that there is no research to support that there are any foods that actually “cross-react” with gluten. A lot of us do, anecdotally, seem to develop additional food intolerances (i.e. lactose intolerance), but as far as I know, these do not interfere with bowel healing (and are likely, actually, the result of our damaged intestines).
      At the ICDS, it was emphasized over and over again, that occult gluten exposure was the leading cause of continued symptoms. They presented one case of a woman with celiac disease who became rather ill from eating a tiny bite of a communion wafer once a week. They also emphasized that gluten can be hidden in medications and vitamins and other supplements. At one point I got cross-contaminated from gluten in one of my thyroid replacement pills. Another time I got sick from gluten in my hand sanitizer. I have also reacted to gluten in shampoo. Early on, shortly after my diagnosis, I got glutened from gluten free chicken wings at a pub, not realizing that they had been made in a shared fryer with onion rings. Many mothers of small children with celiac have experienced a persistence of symptoms in their kids as a result of gluten being given to children outside of the home (i.e. babysitters letting kids have a bite of pizza or playing with playdough at school). If you have a shared household, you may want to make the entire household GF and
      see if that helps. It was not until my entire home went GF, almost 3 years after I was diagnosed, that I had full healing.
      I wish you the best with everything, and I hope that, with time, that your son’s health and symptoms improve. Jess

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