Celiac Disease and the “Worried Well”

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My oldest daughter just got diagnosed with Celiac Disease. Maybe it really isn’t called that, but she had a strong reaction on the test. She was feeling sore in her joints and they decided to give her the test. We will be having her re-tested to be sure, but are already taking appropriate steps with her diet.

I have had a discussion over the years with my better half that the whole celiac thing is overblown and that most of it is b.s. So this is a funny diagnosis in a goofy sort of way. My wife and I pretty much eat anything and everything and had passed that along to our kids. There are literally only four or five things I don’t like to eat and my wife is the same way. Protein, starch, vegetables, fruit, all in moderation. A balanced diet. Seems to work for us.

A friend of mine on Facebook posted something interesting about some research that is proving that most people when they are lied to about what they are eating and given placebos, feel “better” or “worse” depending on what they THINK they are eating. I completely believe this. One doctor (or so he said he was one) provided this comment, that to me, became the quote of the day:

In my practice I frequently see people who have NOTHING WRONG WITH THEM but who have a strong need to assume the role of a patient with some kind of diagnosis. I encourage them to go see “alternative medicine” practitioners. Indeed, the great benefit of alternative medicine is to provide the “worried well” with a pantomime theater of treatment.

While my daughter’s diagnosis could be true, I still believe that the vast majority of people who are going “gluten free” are doing so out of misinformation or wanting to be part of a fad. Just for kicks, my wife and I are getting tested as well. We hear that it is hereditary. But we both feel fine. Maybe we need to get our chakras in order and everything will be OK.

19 thoughts on “Celiac Disease and the “Worried Well””

  3. I had not heard of joint pain with celiac disease. Here is a pretty good study abstract.

    A total of 93 patients with a valid CD diagnosis were identified, corresponding to an incidence rate of 6.4 per 100,000 person-years. At diagnosis, diarrhea and weight loss occurred in 54% and 47% patients, respectively. In total, 30% had anemia; 40%, iron deficiency; 20%, folate deficiency; and 17%, vitamin B12 deficiency. Vitamin D deficiency was present in 34%. In 28%, bone mineral density was determined during the first year after diagnosis. Of these, 54% had osteopenia and 12% osteoporosis. After introduction of a gluten-free diet, 28% had normalized transglutaminase antibody levels after 6 months, and 56% did after 12 months.

    It is wildly over diagnosed and the diagnosis should be with a biopsy of intestine which is done with swallowed capsules.

  6. From what I understand, joint pain is a symptom of non-Celiac gluten sensitivity which is its own condition. I’m not completely certain but I don’t believe there’s even a test for it, so it may be subjective diagnosis.

  7. The doctor quoted in the original post is no better than the quacks he’s referring patients to. Possibly worse. He’s harming those who sought his advice and treatment.

  8. My wife avoids gluten and feels sick when she eats wheat products, even unwittingly. Yet she reads the articles that it is all overblown and laughs at herself that it is probably all in her head. I wisely do not comment.

    It’s not a bad strategy. If something bothers you, don’t eat it, but keep open the possibility that something else may be happening, or that some minor adjustment might bring it back to your plate.

    Serious food allergies are undeniably up, even if people are latching onto them for reasons that are more psychological. Until that is definitively explained, I don’t think we can make general assertions about food sensitivities, which are quite plausibly related.

  9. I wish it would be a fad. Got diagnosed with a gluten allergy, ignored it thinking it’s a fad and woke up 2 years later with severe allergies to soy, diary, cocoa, coconut and 80% of the foods I used to eat.

  10. “severe allergies to soy, diary, cocoa, coconut and 80% of the foods I used to eat.”

    This is not celiac disease. It is specific condition diagnosed by biopsy.

  11. Interesting comment abut sending healthy patients to quack-medicine practitioners.

    For quite a while now I’ve wondered what was behind the increasing legitimacy of these quacks in the socialised medicine system in my country, perhaps this is the answer. It clears out all the time-wasters and dumps them into a parallel non-medical system that cares for their actual malady; chronic worrying.

  12. My wife has celiac disease related to an ongoing autoimmune condition. It was diagnosed by biopsy, but the Gastroenterologist was pretty bad at describing how she concluded this so my wife hat to specifically raise the question of the basis of diagnosis. If the medical community wants to discourage the wilder “alternative” medicine stuff, they need to be able to explain in layman’s terms how they arrived at a diagnosis. This should be trivial for a doc who has just done a proper differential diagnosis, but lots haven’t gotten the email that they are no longer god like figures.

    Overly strict compliance with guidelines is also a factor. As noted by Mike K, often biochemical changes are found (Vitamin, etc.) but patients are evaluated by the reference normal range of test results rather than the overall information. This leads patients into the arms of the alternative crowd who actually effect some relief by recommending blindly some vitamin or mineral diet supplements.

  13. Patients who seek out “alternative practitioners” are often very difficult to convince that conventional treatment is better so I didn’t even try.

    I used to get referrals from a local doc who had an MD and a Chemistry PhD but who had decided to cater to the alternative medicine crowd. He had a busy practice and would send me some of his “failures.” One example was chelation for arteriosclerosis. I remember one old man with a black big toe. I did a bypass to save his leg, along with amputating the toe, and sent him back. There is no point in trying to convince there people.

    A friend of mine, Fred in my book, used to get colon cancer cases from a chiropractor who noticed blood in his high colonics and would send them over.

    Unfortunately, the guy with the MD PhD hired a few assistants who were not as smart. One of them sent me a young military wife with cancer of the thyroid. He had already given her Iodine, which makes the usual treatment of thyroid cancer ineffective.

    Another, who had been my intern at one point, came to me with abdominal pain himself. I operated on him and found cancer of the small intestine. Unfortunately, it was beyond cure and I found he had no life or health insurance. Believed his own stories, I guess.

  18. In editing my post before sending it I apparently omitted the name of the risk – Lymphoma. I know the risks from personal experience. I lost a friend, a rugged man who made his living as a cowboy, to lymphoma which was associated with Celiac disease. Take the disease seriously.

  19. There is an interesting article about lymphoma, which is a fairly frequent consequence of some other diseases, in the New England Journal. I can’t find it right now but it was by a woman physician who was an early survivor of Hodgkins Disease and now, after 40 years, has a lymphoma as a probable consequence of her treatment. Lymphomas are sometimes secondary to successful treatment of other diseases.

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