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Summary #2
Most experts I know of in the U.S. say you need to eat gluten for 12
weeks. And it all depends on the individual.
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I would never do a gluten challenge...I've heard horror stories about re-submitting one's self to high (testable) levels of gluten after being gf or even 99% gf...sometimes the body's reaction to reintroduction is merciless. I am self diagnosed and was a little lax on "hidden gluten" and found out the hard way (health slowly went waaaay down hill - I'm 40 and gf 3 years). I slowly became anemic, platelette levels sunk, white blood cell levels sunk, skin was a mess, major chronic constipation, messed up hormones, etc. I know now that I cannot have slightest amount. My husband, children and I were tested 3 years ago...University of MD (including genetic testing), Prometheus (blood tests), Entero Labs. Both blood tests came back w/ conflicting and/or inconclusive results. Entero Labs said we all had gluten sensitivity. The kids were getting progressively worse, I went off gluten to get the hang of going gf for the kids' sake (my husband is a biologist, has the gene but won't go
gf because the tests were contradictory so he threw it all out the window). I don't have either gene, didn't test postive at all, but viola, when I went gf I lost 10 lbs. right away, skin cleared up, gas/bloating went away. I assumed Celiac (ish) and all of us went gf.
We've never looked back. Gluten messes us up seriously...I'd never reintroduce it. Your intuition knows more than the tests and if you're looking for the test results to "make you go gf", what if the tests say you're not Celiac? I believe there's a broad spectrum of Celiac/gluten sensitivity but the tests only register serious enteropathy...they register when you're extremely ill, symptoms or not.
Sorry to inundate you with info you didn't ask for...just thought I'd give you my two bits (I hope others will do so kindly, as well) and hope you'll be well and trust your instincts. Its hard to be 100% gf but if you take L-Glutamine (my naturopath says 2tsp./day for a year), gooood probiotics, etc., your gut will heal in time. All the best to you.
Thanks for posting, and I look forward to your summary. When I sought answers to this, I never found anything definitive, and of course there's the nasty little secret about the false negatives for the blood tests (even biopsy, for that matter), so, even if you don't get a definite diagnosis, it does not mean that you will not fare better gf.
If gluten does not give you obvious symptoms, then delay the test as long as possible and load up on as much gluten as possible (if you really want a chance at "proof"); or, maybe just do the gene test and settle for that, if you don't want to risk something terrible that might not go into remission easily even once you go strictly gf.
I've never decided how reliable Dr. Kenneth Fine (www.enterolabs.com?) is, but he claims that even if you have been gf for a long time, his stool test will still find the antibodies. I think he may even be covered by some insurance companies now; and he also has a mouth swab gene test ($149, I think).
False Negative Serological Results Increase with Less
Severe Villous Atrophy
Dig Dis Sci. 2004 Apr;49(4):546-50
Celiac.com 08/27/2004 - Dr. Peter Green and colleagues at
the Department of Medicine, Columbia University College of
Physicians and Surgeons, New York, New York, conducted a
study designed to determine the sensitivity of the various
serological tests used to diagnose celiac disease. To do
this they looked at 115 adults with biopsy-proven celiac
disease who fulfilled strict criteria which included
serological testing at the time of their diagnosis, and a
positive response to a gluten-free diet. Out of those
studied, 71% had total villous atrophy, and 29% had
partial villous atrophy.
Serological results indicated that only 77% of those with
total and 33% of those with partial villous atrophy
actually tested positive for celiac disease, and it did
not matter whether the patients presented with classical
or silent symptoms. All patients who were positive for
anti-tissue transglutaminase had total villous atrophy.
The researchers conclude: "Seronegative celiac disease
occurs. Endomysial antibody positivity correlates with
more severe villous atrophy and not mode of presentation
of celiac disease. Serologic tests, in clinical practice,
lack the sensitivity reported in the literature."
from www.celiac.com Copyright © 1995-2004Scott Adams
Most want the challenge for 6 weeks and even then there it's not guaranteed that tests will be accurate. You are probably better to check out www.finerhealth.comm (Based on experience we had with our, I'd want on a pre-challenge biopsy to assess the villi with g.f. to compare with an after challenge biopsy. What doesn't look too bad after a challenge might be much noticeably worse than pre-challenge.)
After two years and you get sick when you eat traces of gluten, you probably have some form of gluten sensitivitiy. Treatment for all forms is the same. Based on your family history, consider it a 'clinical diagnoisis' of celiac--Symptoms go away when you get gluten. Find a support group and figure out how to get all the gluten out. After most of the gluten is removed, tolerance levels reset and it takes much less gluten to produce a worse reaction. Several in our group who had no GI symptoms prior to diagnosis (celiac caught through a blood screening) have reactions since they are on the diet.
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