--not just children, with malabsorption issues such as low iron levels and Vitamin D deficiency (though, as regards iron, the possibility of heavy menstrual periods in post-menarche women may be a factor) should be titred up for celiac, as malabsorption of nutrients in the small intestine is the hallmark of the condition.

The tests results are not entirely normal--the our of range test, the antigliadin IgG, is the most sensitive but the least specific for celiac; it tends to be the first test to become abnormal, though, in those that are gluten sensitive. The transglutaminase tests tend to be the most specific as regards degree of damage to the intestinal villi (wouldn't have been a bad idea to get a transglutaminase IgG level as well).

Still, this is a sign to cut out gluten. Doing that cannot hurt--no one NEEDS gluten to live--and might well help, although don't expect any improvement to be dramatic.

The gold standard to diagnose celiac is still evidence of villious atrophy on endoscopy. But often the damage is patchy or spotty so it is important, for samples to be taken from many parts of the intestine if the test is done (there is a tendency for some gastroenterologists to just sample the upper part of the small intestine in just a few places).

Welcome Need An Answer.

Thanks for your response

Her cycles are light, so I think I can rule that out as contributing to the iron issue.

I wonder if the celiac panel was as accurate as it could be -- this was taken in January - 5 months into her illness. After a 20 pound weight loss when she is eating only very little here and there. I wonder if its an accurate picture? Does any abnormal reading point to gluten issue with or without celiac?

You indicate not to expect dramatic improvements if we drop gluten. What does that mean? If gluten is the root of her issues, and we drop it, what should I expect? When people go gluten-free how long does it take until they think they are seeing a difference? Weeks? Months? Years?

Thanks!

Hi Need_An_Answer

I suggest that you and your daughter see a qualified dietitian about this. Dietitians are evidence-based health professionals who specialise in working with clients who have food issues.

I think that it would be a good idea if you took along copies of the results of the various clinical investigations that your daughter has had.

A dietitian should be able to interpret them and (depending) suggest ways in which what your daughter eats could improve her health.

--is the most sensitive but least specific of the celiac panel tests, but it is often the first test to turn "out of range", and is often the only sign of gluten problems in those who have some degree of sensitivity but may not (yet) have frank celiac.

The problem is that gluten sensitivity has many different presentations--for some people the first signs are not gastrointestinal but neurologic.

What I meant by "don't expect dramatic improvement" is that it takes time for this damage to occur, so it takes time for it to heal, especially if there is villious atrophy causing malabsorption. This is not to say that some people don't feel better fairly quickly, but generally this is a gradual process.

You need to get up to speed on gluten issues quickly--I recommend as a good first stop The Gluten File, put together by the semi-famous jccglutenfree (AKA Cara) and easily linked to right in this forum:

https://sites.google.com/site/jccglutenfree/

I think this is still the single most comprehensive database on the subject, as it brings in papers and studies across the spectrum of gluten sensitivity. Cara has been maintaining it for years and I give her a great amount of the credit a decade or more back for bringing the whole issue out of the doldrums and into public awareness.