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Hello Listmates,
This is my third attempt at posting this...my other two must be floating out in cyberspace so if 3 of the same subject appear miraculously, forgive me...here goes.
I saw the recent discussion on Dr. Fine and thought I'd add to it since a post of mine concerning EnteroLab tests several months ago spurred a flurry of discussion. That's where I started with my family's testing...all 6 of us (4 kids ages 11,9,6, 4, spouse & self) had antigliadin test and fecal fat for malabsorption. ALL of us came back positive for fecal antibodies as well as pretty high numbers for fecal fat. (I have biopsy diagnosed niece, husb. has Celiac symptoms all over his family tree).
After that we had a very reputable lab in CA test the two kids w/ the most classic symptoms...both had high IgA numbers, IgG, negative/normal EMA, tTG and Total Serum. Then we had my husband and myself tested through the same Lab and both of us came back w/ normal/negative numbers. Last, for the sake of completion & definitive testing, we had a very reputable Celiac Reasearch Center test all of us, including genetic tests (results still pending). Of the six of us, the 2 kids who had not been previously tested had high IgG, IgA, one (the 4 yr. old) had low Total Serum. The two who had been tested previously came in w/ normal numbers, my husband had high IgG. All EMA, tTG were normal/negative. My numbers were within normal range.
So, 5 of 6 of us have tested w/ high IgA or IgG or both and normal on the rest. I was told originally that negative results for the EMA & tTg w/ positive antigliadin antibodies proves nothing, but then read several abstracts saying otherwise. It seems to suggest that we may not have full-blown disease, but a predisposition or early stages.
I've gone ahead and put everyone except my husband on gf diet...w/ testing done I figure if it leads to an end of their myriad of symptoms I'll have accomplished something, & taking the chance that we don't have it simply poses too many risks as I've read over and over. We've been gluten free for about 2 weeks and we've had no belly-ache filled nights, allergies have calmed, things seem to be settling down. The kids can tell when they've accidentally eaten something w/ gluten because they get a mild belly ache (all had same candy & w/in 1 hr. were complaining). That's been enough to convince them, along w/ the memory of pre-gluten eating, and now they agreeably avoid the glutinous things. The greatest change I've seen is in their appetites...they are all eating like horses! Even things they turned their noses up to before! Tons of fruits & veggies, anything really that is offered. Hurrah! Maybe we'll see some weight gain next!
Well, anyway, sorry to go on. Just thought I'd share my experience w/ non-traditional/controversial vs. traditional testing. We're eagerly awaiting the genetic results, and my husband will have a biopsy soon. I've been low on gluten for so long because of high protein/low carb diet so who knows what my numbers reflect...I know staying off gluten has me feeling svelt & more energetic, no more bloating, constipation, aching, fogginess.
Just to clarify, we don't have a local doc who has up-to-date Celiac knowledge. I've read so much about doc-hopping in hopes of finding one who will be willing to test. Our doc read our first results & said "no chance of Celiac here, do a cbc and look for leukemia or something"; I gave her a few tidbits of info about CD, quoted NEJM article, etc. She then called me back a week later and said she'd read up on it and we all needed to be tested further...gave us orders for blood draw and let me run with the rest.
So, that's our story...here's to feeling well! This List has been invaluable...I continue to read....
Kate, Salmon, ID
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