I recently received results for my daughter from EnteroLab's "Gluten Sensitivity Stool and Gene Panel Complete," and
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our nutritionist suggested I ask my questions about them here. She is 18-mon and from birth has struggled with digestive problems (LONG story), including MSPI & difficulty w/ all carbs/starches. She trialed wheat for maybe 2 wks but never had much. These test results are just one more piece in the puzzle for us.
I'm curious what you see as the implications of her "fecal anti-tissue transglutaminase IgA" being elevated. (Normal is < 10, hers was 88.) From reading on-line, it looks like when this is in the blood it's a trigger for drs to do a biopsy for Celiac. Does it point to possible Celiac when in the stool, too?
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Anti-tissue transglutaminase IgA is more directly associated with celiac disease than antigliadin IgA. Anti-tTG is an autoantibody that causes the destruction of intestinal vili. Having a positive anti-tTG stool test does not necessarily mean she would show positive blood anti-tTG, or that she would have a positive biopsy. The stool test can detect the antibody before it shows in the blood.... "earlier" in the whole process. I have no idea how many people with a positive stool anti-tTG do prove to show villous atrophy on biopsy... I'd have to go search Enterolab website to see if they have any more info on that. Usually if someone is using Enterolab they are sidestepping traditional testing, or have already had traditional testing show negative.
Antigliadin IgA shows an abnormal response to gluten, but it is not an autoantibody that causes direct destruction of any other organ or tissue. People with positive antigliadin antibodies are gluten sensitive.... and may have wide ranging symptoms as a result... not just GI, but also neurological symptoms, skin symptoms, other autoimmune disease, nutritional deficiency and more.
In any case, the stool tests above confirm your daughter should be gluten free! I'm not sure what the "chance" she might have full blown celiac disease. Without the main genes, according to statistics, the chance of her showing biopsy proven celiac disease would be less than 5%.
We decided to skip the biopsy on my daughter back when she was 4 years old. She had a positive blood antigliadin IgG, considered the weakest of the markers. She had gastrointestinal, neurological, and other symptoms. She improved on the diet.... dramatically.. .and we've never looked back.
My blood antigliadin and anti-tTG tests were both negative. I went gluten free to support my daughter and a life time of nagging GI symptoms just vanished. Now we are both 100% gluten free and 98% dairy free.
Thankfully over the last ten years recognition of gluten sensitivity without celiac disease is on the rise. More and more doctors are realizing this truth. I think you are definitely on the right track to keep her gluten free.
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Finally, my husband, my son, and I have no apparent problems digesting gluten, but given my daughter's genes results I'm thinking probably we should be tested, too. Do you think a simply gluten sensitivity test (anti-gliadin IgA) is sufficient? Are there advantages to also getting the anti-tissue transglutaminase IgA test? Or the entire panel?
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For you, your husband and son.... are you thinking of doing the blood tests or the stool tests?
I generally think its worth starting with the blood tests, especially if insurance will pay for it. I know some people think it best to start with Enterolab because it is the most sensitive test. A case can really be built in either direction.
The blood tests are "mainstream" accepted, which is why I think they are worth having done on the chance they will show positive. A positive anti-tTG blood test is 95% predictive that villous atrophy will be found on biopsy.
The important thing is to realize that one can definitely be gluten sensitivite
and have negative blood tests. In fact, up to 20% of those with biopsy proven celiac disease have negative blood tests. They are a good screening tool, but are not perfect.
The stool tests are more sensitive in uncovering cryptic gluten sensitivity in those with negative blood tests, although it cannot diagnose celiac disease ("only" gluten sensitivity... which is just as important imo), and the results aren't accepted by all doctors... although more and more every day.
If you and your husband had the genetic testing done first, then you would know what possible combos your children could have.
Just one daughter and I did the genetic testing. We both had double copies of HLA DQ1. Because my daughter had double copies, we know my husband must also have at least 1 copy of DQ1. Because I have double copies, we know my other children must all have
at least one from me. So.. you may not need the genetic testing on all.... you may be able to figure a few things out from just a couple of you.
I think the antigliaidin test is going to be the most sensitive test, so if you are looking to cut costs... maybe that one first? Blood or stool... up to you! Just know what the various tests mean and don't mean!
And... hopefully someone else will give their point of view, too!
I'm not sure it is worth going 'backwards" for blood tests for someone already on a gf diet, like your daughter, especially if you have positive stool tests and a positive result on the diet.
Gluten sensitivity can cause a lot of symptoms that aren't digestive... you might want to scan through The Gluten File. I have pages to explain the various testing, and also pages that discuss other symptoms and conditions associated with gluten sensitivity. Is there any autoimmune disease in your family history? Migraines? Othe neurological problems? etc?
Sorry if this post is rambling... I was up all night with a sick dog... never napped... and am not thinking real well right now!