<<Disclaimer: Verify this information before applying it to your situation.>>

> I heard an interesting statistic one day from a speaker from the program
at
> the University of Chicago ... she said the people who fared the worst with
> CD were those who went on and off a GF diet. That is, she said they had a
> 6-times greater mortality than did people who stayed on a GF diet, period.
> That scared the heck out of me, as far as doing a "gluten challenge."  She
> also said, in the same speech, that testing was critical.  WHY I do not
> know, if symptoms all point to the conclusion that you have CD.  I raised
my
> hand and asked, of course, how could you be tested if you were on a GF
diet?
> She said, also of course, that you had to be eating gluten to be tested.
> How much?  The equivalent of at least 3-4 pieces of bread a day for 3
> MONTHS!  I followed up with the query of -- "well, isn't it dangerous, as
> you just said, to go on and off a GF diet?"  She wasn't a doctor, but a
> spokesperson for CD awareness for the University; I clearly threw her for
a
> loop.  She did not have an acceptable answer. But the answer for ME is to
> assume I have CD, and I don't need tests to know that gluten is NOT my
> friend.  If I went off of my diet for 3 months, I probably couldn't walk.
> So, forget it, as far as I'm concerned.


Friends,

As the "representative" mentioned in the post on diagnosing celiac disease
in people on the gluten free diet, I thought you might want to know more
about this topic. I wrote an article for celiac.com's publication The Scott
Free Guide to Gluten-Free Living, entitled "How Strict is Strict" which goes
into more detail. Here are the basics:

The Italian study published in the Lancet in 2001 was a revealing look at
mortality rates in people with celiac disease over a thirty year period. As
I've mentioned previously, some elements of the study can be understood by
the times in which it was conducted. Before blood testing, people tended to
be diagnosed later and not do as well. However, of the three study groups
(celiacs not on the diet, occasionally on the diet, or always on the diet)
it was striking to see that those who did not completely follow the
diet--over several decades--tended to die sooner than their siblings without
celiac disease. Compared to other groups in the study this was significant.

The use of gluten challenge in the diagnosis of people already on the diet
is a question that is open to some debate. Many of the world's finest celiac
experts use gluten challenge on a short term basis to establish a clear
diagnosis of celiac disease in certain patients. It is most optimal for an
individual to discern the risks and benefits of a gluten challenge with a
medical professional who is familiar with their medical history. Many
patients cannot tolerate a gluten challenge, and physicians must proceed
with that in mind.

When discussing this issue, I have also included information about HLA gene
testing for celiac disease. While this is not a definitive diagnostic tool,
in 2/3 of the cases, people on a gluten-free diet can learn they do not have
the DQ2 or DQ8 haplotypes that are required for the development of celiac
disease. This can "rule out" the condition and allow many people to seek an
alternative diagnosis.

It is a wonderful opportunity to speak to groups around the country about
celiac disease, with the ultimate goal of providing information to
individuals seeking a diagnosis or improved medical care from their
physician. These are exciting times we live in, where important studies
about celiac disease are being conducted and new information published more
often than ever before. There's a lot we still don't know, and the area of
gluten challenge is still very gray.
Hopefully, not for much longer.

Michelle


Michelle Melin-Rogovin, MPP
Program Director
University of Chicago Celiac Disease Program
5839 S. Maryland Avenue, MC 4065
Chicago, IL. 60637
Phone: 773-834-0166
Fax: 773-702-0666

*Support summarization of posts, reply to the SENDER not the Celiac List *