Five Questions To Screen Your GI Doctor for Celiac

May 17th, 2009 by Jean Duane

I have the utmost respect for most doctors, and like any other specialty, they all have different areas of expertise. If you suspect you may be gluten intolerant or have Celiac Disease, it is really important to find a doctor that has that insight. I?ve heard from doctors that a total of five minutes is spent on Celiac disease in med school, and that they are told it is a very rare disease. Hopefully that will change.
Statistics indicate that gluten intolerance is relatively common (90 million Americans have some form of gluten sensitivity according to Dr. Ron Hoggan) and Celiac Disease affects one in every 100 Americans, but only 1% are diagnosed.
You have to wonder why we are suddenly hearing about it. There is a (HLA) marker that indicates a predisposition to Celiac disease and I heard there is another marker for gluten intolerance. These are mouth-swab tests that you can have done by independent laboratories. Stress, age, foreign proteins, illness or pregnancy can trigger the marker to be released. Or, perhaps, as we age, our tolerance to this protein diminishes. Or possibly since it is in virtually every bite of processed food, we are just over-consuming it and have broken our resistance to it.
It does seem like more and more people are jumping on the gluten-free bandwagon. Before you self-diagnose, I highly recommend going to a doctor to be tested. Why? Let?s just say you go gluten-free, or go on the GFCF (Gluten-free, Casein-free) diet and feel much better (like most people report they do) in 3 months. You realize how bad you were feeling all those years and that you do not ever want to feel that way again. But if you needed to be formally diagnosed, you would have to go back to eating gluten for a period of time ? about three months! So, you?d be back on the sick-road just to get diagnosed.
Another scenario: Let?s say you shattered your kneecap and had to check into a rehabilitation center for six weeks. You are immobilized and someone else will be preparing your food. Wouldn?t it be better to have a letter from a bona fide doctor documenting your food intolerances or allergies, than you just saying, ?I don?t eat gluten.? I just think you?d be taken a lot more seriously, and heaven forbid, would have a leg to stand on (the non-shattered leg) if you were accidentally exposed.
Five questions you can ask a new doctor to screen them to ensure they have a good understanding of gluten intolerance and Celiac disease follow:
1. What is the ?typical look? of Celiac Disease or gluten intolerance?
Some people think that a Celiac is skinny and emaciated. That is true for some, but not for all. Some say that diarrhea is typical too, but again, that is true for some, but not for all. Here?s the theory I heard at the GIG conference at a lecture by Dr. Fasano from the University of Maryland. In some people, gluten isn?t broken down in the intestine and it leaks out into the bloodstream. The blood sees it as a foreign protein and attacks it with antibodies (which can be detected with a blood test). Once your body is full of antibodies, problems can manifest in MANY (some say over 100) ways ? migraines, joint pain, arthritis, diarrhea, constipation, behavior problems, depression, dental enamel defects, itchy pervasive rash, a general feeling of malaise and on and on.
2. What is the diagnostic process?
Blood tests are usually done (See 4/29 Diagnostic Tests Blog entry). From listening to lectures from doctors that specialize in Celiac Disease and Gluten Intolerance, it is my understanding that if you fail one of the tests, that is enough of an indication that you are intolerant ? and if you continue to eat gluten, you will likely fail other tests in time. It is a cumulative illness that will not get better unless a completely gluten-free diet is followed.
3. If I have a rash, where should a biopsy be taken from?
Most doctors take the biopsy of the actual bump, but with dermatitis herpetiformus, the biopsy should be taken from the healthy skin near the rash.
4. If I am Celiac, how much gluten can I tolerate?
None. Even if a person is asymptomatic, any gluten can cause damage, and in others, reactions.
5. Do I need to be eating gluten when the ?scoping? is done?
Yes, you need to be regularly consuming gluten when you are in the midst of the tests. A doctor told me that the damage would be residual and even after 60 days, would still be visible. This was contradicted at several lectures by specialists at conferences. It just goes back to the original point ? this particular doctor thought he was right, but he wasn?t because this was not his area of expertise.
I hope this helps. This is in no way to be construed as medical advice. I am not a doctor. I have gone through a lot to be diagnosed and it is my mission to curtail the diagnosis process. It took YEARS for me but maybe if you are equipped with this knowledge, your process will be streamlined. Please feel free to add to the list with questions you’ve uncovered to screen your doctor. Good luck with this. There is a reason we?re called ?patients?. (c)Alternative Cook, LLC 2009. All Rights Reserved.

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5 Responses to “Five Questions To Screen Your GI Doctor for Celiac”

  1. Comment by GarykPatton

    Hi. I like the way you write. Will you post some more articles?

  2. Comment by Diane Woppert

    My 20 year old daughter thinks she may have celiac or at least a gluten intolerance. She has a history of GI issues and her current symtpoms are especially suspicious. Numerous sites recommend a person not start a gluten free diet until they are diagnosed. However, she can’t get a doctor appointment for two months with a GI doctor and 3 months for a dermatologist. (She suspects she has DH.) For her to continue being miserable, (i.e. vomiting, nauseous, terribly fatigued) is not really an option so she has eliminated gluten in the meantime and is starting to feel better. It is a very frustrating situation.

  3. Comment by Jean Duane

    As I understand it, the test results will not be reliable if a person is not being “challenged” — eating gluten during the time the tests are done. I wish I had known this when I was going through the testing. Like your daughter, I had reached my tolerance threshhold, and would have stopped eating anything if it meant I could feel better. You’ve probably already done this, but is there any way to ask to be on the cancellation list, to get in earlier? It is really frustrating.

  4. Comment by KonstantinMiller

    How soon will you update your blog? I’m interested in reading some more information on this issue.

  5. Comment by Jean Duane

    I update 3 times a week, so stay tuned…