Could anyone provide some insight on this?

I've had negative tests for celiac (biopsy and blood tests), and enterolab results are below:
Fecal Anti-gliadin IgA: 9 Units
Fecal Anti-tissue Transglutaminase IgA: 3 Units
Quantitative Microscopic Fecal Fat Score: Less than 300 Units
Fecal Anti-casein (cow's milk) IgA: 8 Units
HLA-DQB1 Molecular analysis, Allele 1: 0501
HLA-DQB1 Molecular analysis, Allele 2: 0602
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

My symptoms (severe acid reflux (LRPD) resulting in laryngospasm and voice issues, also bloating) seem to be relieved with a GF diet (although I have only made attempts for about 6 weeks at the most at any given time before I give up). I am also lactose intolerant, and have mild asthma.

The main question I have: given that I have 2 copies of the gluten sensitivity gene and also have symptoms that appear to be resolved with a GF diet, why would all of my tests suggest that I do not have any issues? Could it be that I do have an intolerance despite negative fecal results (it seems that I would be a rare case).

Thanks for any insight!

Enterolab has a high positive diagnostic rate... I think something like 60-70% of those testing turn up positive (keeping in mind this is already a symptomatic population and a sensitive method of testing). They gets positives on something like 30-40% of the general "healthy" population.

Do you know if you have ever been tested for Total IgA (by blood test)??? Some people have a condition called "Selective IgA deficiency", and they can fall through the cracks in both blood testing and stool testing. I have no way of knowing, but this might apply to you. If you read the second article below, you may get a sense for whether this sounds like you or not. People with IgA deficiency tend to get sick more often with respiratory tract and urinary tract infections requiring antibiotics, often have food sensitivity and autoimmune disease.

From what I remember, Enterolab says they can have some false negatives due to IgA deficiency, as their tests look for IgA class antibodies. If you look through the FAQs on their website you will probably find this mentioned.

Dr. Fine suggests a gluten free diet trial in the event of negative tests for this reason. If you respond positively to a gluten free diet... then you have your answer... even though you may wish you had something on paper to point to. Give a gluten free diet a very honest try, strictly gf, for at least 3-6 months... and listen to what your body tells you.

Here are two papers on IgA deficiency. If you are IgA deficient, or below range in total IgA, this might explain your predicament. You could ask to be tested for this to rule it in or out.

Celiac Disease and Immunoglobulin A Deficiency... by Kumar, et al.

Selective IgA Deficiency -IDF Patient/ Family Handbook

Hope this helps!
Cara

Thank so much for your insight and quick response!

I should have mentioned the specific tests done previously:

tTG IgA result: 1 (Ref: negative 0-3)
Immunoglobulin A Qn, Serum 115 (ref 70-400)

Yes, definitive results would always be nicer, although I guess the genetics and the symptoms should count for something....

Thanks again for your help!

I wonder if you would test positive for antigliadin IgG, the original one, not the anti-deamidated gliadin one. At this point, just go with the diet if you think you've experienced some improvement while on it.

There are people who test completely negative on tests, but improve on a gluten free diet.

I was wondering that too. The other thing is that my Enterolab Fecal Anti-gliadin IgA was 9 Units and with the cut-off being 10, I was also wondering how subjective the results interpretation is - for example if they were to run it again if it would be just one digit up it would be considered a positive result.

I'll take your advice and go GF again and let the results speak for themselves. In the end feeling better is of course the plan, but it is certainly easier to follow with results to look at in black and white anytime I have the urge to eat some cookies and bread.......
Thank you, Cara, you were most helpful!

If you are looking for some motivation to dump wheat, here are a couple of articles that might help.

http://ezinearticles.com/?The-Dark-S...nce&id=1818855

http://www.greenmedinfo.com/content/...-human-disease

http://findarticles.com/p/articles/m...c/ai_94538644/

Hi Cara,
I thought I would post this information - it may be helpful to others seeking information.

I received a call from Enterolab last week regarding my results:
She said that my previous IgA results 115 (ref 70-400) would be considered a "low level normal". Given this, and also given that my fecal Anti-gliadin IgA and Fecal Anti-casein results (9 and 8 respectively) were significantly higher than my Fecal Anti-tissue Transglutaminase IgA (3 Units), that I am probably reacting to both gluten and casein. Typically the "negative" results are all approximately the same. I already knew I had a problem with dairy (although blamed it on lactose) and I was pretty certain about the gluten.
She also mentioned, as you did, that improvement on the GF diet gives me my answer, but she also said there really is enough from my results to back that up. So, after this weekend I will start it again.

Thanks again for the help, and hopefully this information is helpful for someone else seeking answers.

Thanks for letting us know what they said.

We've had discussions about IgA deficiency in the past, trying to determine if "low" IgA affects test results even if one doesn't have total IgA deficiency.... and the final consensus was yes. One of my daughter's runs like 1 or 2 points under low end range. She's had it tested twice with pretty much the same results. And... when you read about IgA deficiency... she seems to fit the bill. I have no doubt her "low" IgA is meaningful.

I've heard that some doctors tell people if they make any IgA at all (so long as they aren't completely IgA deficient defined by <7)... they make enough to test positive on test results. BUT... then I've heard some of the more trustworthy experts say that even low IgA can affect test results.

The tests are good but not perfect... which brings it back full circle to one's response to a gluten free diet may be the best test of all. Good luck! Hope you enjoy much improved health on a gf/cf diet!

My cousin, whose youngest daughter has full-blown celiac disease (and was, evidently, born with it) has finally, at the age of 40+ been tested by endoscopy. Twice. The first time revealed nothing. The second time they found the culprit vili that had been damaged. So she too has it, yet all her bloodwork and other tests fell within the normal range. I've had the blood tests and the allergy tests; all came back negative but I've not eaten gluten (knowingly) for some fifteen years now. (I do have the occasional "fall off the wagon" -- something I always regret.) I've been told I could be just gluten intolerant, wheat intolerant, etc. but have finally gotten to the point that it doesn't much matter what the tests say. I know I feel lousy when I eat it so I don't. And I'm deeply suspicious that my "idiopathic peripheral neuropathy" was caused by years of eating gluten. My cousin has also changed her diet to gluten-free -- pretty easy with a ten year old in the house who even has her own toaster, she's so sensitive to gluten in ANY form. We all feel better. Go for it. It's not worth the agony of feeling lousy. And gluten free products are more and more available in stores now.

FWIW - best of luck.

Marcia

Does anyone have experience with gluten sensitivity and Raynouds?