Don't Experiment With A Gluten-Free Diet!

The problem with "trying" the gluten-free diet to see if it fixes whatever ails you is that you may find -- as I did, as so many others do -- that once you are off of wheat, rye, and barley, you may not be able to eat enough of the stuff ever again to get an accurate diagnosis. This phenomenon is well-known to knowledgeable gastroenterologists who deal with celiac disease often: for many people, the less gluten they eat, the less they tolerate it. There is something called a "masking effect" that makes it so that you have none of the obvious symptoms while eating those toxic grains, but once you begin to remove them from your diet, you become sensitized to them and find you experience some nasty effects (diarrhea, nausea, constipation, malaise, brain fogs, and so on) which will make it so that you will not want to eat enough wheat bread to get tested. (A milder version of "masking" is familiar to most of us who know someone who started smoking: at first the new smoker coughs, perhaps gags, and gets dizzy, but constant, persistent exposure to smoking makes these signs that the stuff is not good for you go away. )

Some Good Reasons To Avoid Self-Diagnosis

If things had gone differently, I would have been officially diagnosed through blood tests and biopsies, but as it turned out, I went mostly gluten-free before I knew what celiac disease was, or that I had it. If I had it all to do again, with foreknowledge, I'd go for the official, sanctioned diagnosis. You may ask why. If I know that a gluten-free diet improves my life, why would I need to bother with the blood tests and a biopsy? Good question.

1. To remove self-doubt. Many many times, I wonder. Am I really a celiac? Sometimes I get pretty good at this diet, and I begin taking a few risks (mostly involving eating out) and get away with it, and I doubt my own diagnosis. This usually ends with me taking one risk too many, getting seriously ill by getting some wheat in my diet, and being reminded that, yes, I am indeed a celiac. But having an official diagnosis would leave me less room for doubts, and risk taking. For some people, it would remove the temptation to cheat, too. (For myself, I have a very vivid memory of what happened the one time I got a large dose of wheat by accident, so I am not tempted to grab a donut and eat it, no way.)

2. To gain the cooperation of the medical community, now and in the future. Doctors take someone who has had the blood test and biopsy a lot more seriously than someone who self-diagnoses. Right now my family doctor and pediatrician believe in me and respect the fact that I am taking responsibility for my own health and my son's, but some day they may not be my physicians (I may move, or they may) and there are so many doctors out there who won't take someone who self-diagnosed seriously. Then what will I do?

3. To gain the cooperation of the insurance industry. This is a two-edged sword. In the U.S. having a "pre-existing condition" damns you to all financial aid for that condition when you are forced to adopt a new insurance plan, but on the other hand the insurance industry won't authorize tests (thyroid, bone density, "keeping the diet" blood tests, etc.) if they disbelieve you've got the disease.

4. To gain the support of family members. Many times one's family refuse to believe that you have a disease if you've figured it out for yourself. Having a doctor's official diagnosis may help (though it is by no means a guarantee that they'll believe or understand your need for the diet). ((Fortunately my family takes me seriously.))

5. To encourage other family members to get tested. This is a genetic disorder, so if you can prove you've got it, it may help convince other members of your family that they, too, should be tested. Your parents, your siblings and your children should be screened for the disease, at a minimum.

6. For generations to come. Having an official diagnosis may help your descendants trace the disease on the family tree.

7. So that you can be counted. This is actually more important than you might think, for many reasons. One is so that you can participate in studies and tests, if you wish. Another is just to add to the numbers of "how many people have this disease." The more of us that are counted, the more likely we are to get funding for studies that will help us learn to cope with the disease, and that will help increase the chances of others who have the disease being accurately diagnosed; and the more of us there are known to be, the more food manufacturers will pay attention to our needs, and the more responsive the FDA will (hopefully) become to our calls for more revealing labeling laws.

8. So that future testing will be more accurate. Having a "base-line" blood test helps in assessing how you're doing with "diet compliance" if you have more blood tests in the future. The same may be true of biopsies, as having a biopsy after you've been on the diet is part of the "gold standard" of diagnosis, to ensure that the gluten-free diet really is working to clear up your problems. (You could, for example, have refractory sprue which would need further treatment than just the diet.)

How to Avoid Self-Diagnosis

The generally accepted standard for diagnosis is now a blood test showing elevated antibody levels, a biopsy showing classically damaged villi, and improvement of symptoms on a gluten-free diet, but the old "gold standard" of a triple biopsy (one to show damage, one after going gluten-free to show improvement, and a third to show damage again when going back to eating wheat, etc.) is still used by many.

The first thing to do is, of course, to ask your doctor to authorize testing. If your doctor doesn't cooperate, consider checking in with your local celiac society to ask them which doctor in your area is most familiar with the disease, and making an appointment yourself. Or look through a list of recommended doctors that is available here on the WWW.

Getting an accurate blood test requires that:

  1. You should still be eating a regular diet, not gluten-free or even gluten-light.
  2. You arrange the test through a lab that is familiar with the procedures and has lots of practice reading the results.

Below is a list of some labs you might consider using:

Specialty Labs
2211 Michigan Ave.
Santa Monica California 90404
310 828-6543 or 800 421-4449

The University of Maryland at Baltimore
School of Medicine
Division of Pediatric Gastroenterology and Nutrition
410 706-1997 or fax at 410 706-0020

University of Iowa Foundation for Celiac Disease Research
University of Iowa Hospitals and Clinics
200 Hawkins Drive
Iowa City, IA 52242

IMMCO Diagnostics, Inc.
Buffalo, NY
716 876-5672
800 537-TEST

A Final Word On The Diagnostic Process

Like many things in life, diagnosis of this disease often does not follow classic, text-book, black & white lines. Even given your best attempts at eating wheat and getting tested, the results can often be mixed and confusing. The most concise (but it is long, yes) discussion I have seen on the ins and outs of tests and their meanings can be found in the archives of the St. John's celiac email list, here in Ted Hodge's pages (search within the text for the words--no quotes--"Limitations in the Diagnosis" to find the beginning of the passage. I especially like the small chart of possible combinations of tests and results; you can do a search for "in a table below" to find it. Some good information on the diagnostic process is available starting here in the FAQ file on Scott Adams' pages.


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Copyright 1996 Linda Blanchard. All rights reserved worldwide.
Date of Origin: October 20, 1997. Moved from old site to January 31, 1999. Last Update: January 07, 2009