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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

High Positive On Igg Elisa Test For Foods I Don't Eat?!
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Hi Everyone,

I recently took the York 96 food intolerance test because I am having trouble figuring out what foods are bothering me after going gluten free. Here are my baffling results:

1.) Only a low reaction to gluten, when my IgG antibodies on my blood tests from my physician still show that they are 4x the "normal" high (eeek!)

2.) An off the charts reaction to Kidney beans, which I haven't eaten in years! And low reaction to soy and white rice, two foods I react terribly to. I know there is cross reaction to high kidney bean IgGs and other legumes, but WHY the high Kidney bean and no IgGs for soy?

So basically, how accurate were these tests for you? Did you have any really strange results, and did they end being reliable based on your symptoms?

Do you know if these tests will show positives for foods that are cross reactive to gluten, like the Cyrex Cross-reactivity test?

Boy I am confused! Thanks for your help!

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If you read into the testing, the accuracy is questionable at best. They talk about cells being destroyed when introduced to XYZ when that's how cells are suppose to act so it isn't really telling anything but that the cells are reacting how they should.

Sorry it wan't more helpful. I know it's expensive.

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My opinion? Do not waste your $$$.

(1) Your erroneous test results speak volumes, don't they? :rolleyes: If the results are supposed to show an intolerance (based on foods that are supposedly triggering antibodies to foods you "flood your system with" and then die down when you remove the offending foods), how does it explain the kidney beans??

(2) There is no scientific evidence of foods cross-reacting with gluten. One study discusses dairy. This subject is hotly debated on here and there is just no validity to it. Search the forum if you want, but none of us who have researched the topic buy into it.

(3) And, a doctor ordered the IgG testing for me --which I paid out of pocket for---and mine showed a SEVERE intolerance to soy --a food I do not eat--and none to gluten and I was a raging Celiac. Wish I had that $$ back, but more importantly, based upon his advice, I lost another 10 months of my life spiraling down in my health.

A recent article discusses IgG testing and says it's a waste of time. The 95% reliability? Not true.

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I have a very high positive for a food I have not eaten in over 30 years. The person reading my test said this could show a genetic issue with that food (which I knew for a fact that it was and we had not discussed that yet). Can't speak for everyone but I know my test was right on.

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It doesn't matter if you eat the food or not, what they do is introduce the food to your blood and watch the reaction. And celiac disease is not an allergy or intolerance (although it's placed under the category of gluten intolerance), so a wheat allergy showing or not showing on the test is irrelevant. If you are already avoiding wheat, it won't effect the results. And who needs to worry if you have a wheat allergy show up on the test, cuz you're already avoiding it. And it doesn't test "cross-reactivity", the test tests for intolerances or allergies, depending how you want to categorize it.

I just had this test done, and it showed highly positive for all the dairy, which I know bothers me. I hadn't been avoiding casein but now know I need to. I was only avoiding lactose before. It also showed mildly high on some fruits which I know bother me. I am glad I took the test and found it quite accurate. :) atleast now you know not to ever eat the food that came up positive for you!:)

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I had a high reaction to oysters which are not something I eat. Yes, I have had oyster sauce but not in recent years. Oysters are not appealing to me, so no big deal. I can't explain your results.

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A recent article discusses IgG testing and says it's a waste of time. The 95% reliability? Not true.

The original article nonetheless included glowing patient testimonials.

The science is incomplete and the article completely ignores the effects of leaky gut, which is what the "celiac pill" from Alba Therapeutics (and Dr Fasano) actually treats.

Page 2 http://articles.chicagotribune.com/2012-04-11/health/ct-met-food-intolerance-tests-20120411_1_food-intolerance-food-sensitivities-food-additives/2

The 95% claim looks to be from the sales dept of the "florida lab". But if it's 80%, it's not like the test is less valuable to those 80%.

The amazing part to me is that someone's charged someone $5000 for these????! Every time I've heard of these they're a couple hundred at most.

The article's somewhat slanted imho (for one, lumping a quantitative blood test w/ procedural diagnostics thought fringey), and certainly the author isn't sympathetic to make it look like it's thousands of dollars.

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When I read that and the other articles against IgG testing, I got a very strong feel that they were trying to push (scare) people into traditional allergy ( IgE) testing. I have had both IgE, IgG and I believe it was an IgA testing. The traditional allergy test was the least accurate.

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I'll give you a somewhat different angle on your results for you to think about. About 3 years ago I spoke with a naturopathy (not a paid appointment - she has a health food store and I was just making general inquiry about what might help my hayfever) and telling her my hayfever symptoms she promptly asked what foods I had cravings for but didnt eat regularly. Two years later these have turned out to be problems for me.

So now three years later I am strictly gluten free, egg free (for the meantime but hope to reintroduce), was dairy free for some time etc.

My DH (dermatitis herpetiformis) has been so bad that I've had to be really serious about food re-introduction.

I've had a long 12 months of experimentation.

I introduce one (and only ONE) food or product in any one/two weeks. It is the only way I can get a real sense of what has affected me. I don't eat out. There are too many variables. I got to the stage where a potential 10 year journey of discovering what works for me -vs- a 2-3 year controlled experiment is better than a lifetime of DH.

Testing hasn't done much for me.. but that is the luck of the draw. Sals (salycilate) intolerance has been a much bigger hurdle for me to deal with than gluten. But (and a big BUT) it has seen a huge improvement in my DH and GI symptoms.

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It doesn't matter if you eat the food or not, what they do is introduce the food to your blood and watch the reaction. And celiac disease is not an allergy or intolerance (although it's placed under the category of gluten intolerance), so a wheat allergy showing or not showing on the test is irrelevant. If you are already avoiding wheat, it won't effect the results.

Introduce the food to your blood?

That is not how the IgG test I had worked.

It was a blood sample, drawn in the doc's office and sent to the lab. The test is supposedly designed to show an intolerance to foods you are consuming.

How else would the body create antibodies to it?

Maybe your test was different from mine?

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FWIW, here are Dr. Weil's thoughts on this. (since the maintream medical community does not seem to believe in their reliability). If people feel they are useful, then by all means, they should use them.

"With certain exceptions (such as sensitivities to lactose and gluten, both of which have a genetic basis), food intolerances are often highly individual and mysterious. In some cases, they are due to physical or emotional stress or exposure to environmental toxins rather than a reaction to the foods themselves. Lactose intolerance results from a deficiency of the enzyme lactase, which is needed to digest the sugar in milk. At least one out of 10 people worldwide shares this deficiency and develops bloating, abdominal pain and, often, diarrhea when consuming milk. Gluten intolerance is caused by an abnormal immune response to the major protein in wheat and some other grains.

I discussed the issue of testing for food intolerances with Randy Horwitz, M.D., Ph.D., medical director of the Arizona Center for Integrative Medicine at the University of Arizona, who specializes in immunology. We agree that the only reliable approach to determining food intolerances or sensitivities is to use avoidance and provocative testing - in other words, an elimination diet followed by a "challenge" to see whether a suspect food really does set off a reaction.

Dr. Horwitz notes that when food sensitivities - not true allergies - are a problem, traditional allergy tests such as the IgE RAST blood tests or skin prick tests often yield negative results. He says that in his practice, he has not seen uniformly good results with IgG anti-food blood tests, applied kinesiology (muscle strength testing), or "live blood" microscopic analysis, all of which have been advocated by some practitioners as ways of determining food intolerances. Results "go all the way from questionable to downright useless," he says.

Instead, he prefers to ask patients to keep a record for a few weeks of everything they eat and any symptoms that develop in response to specific foods. This can help narrow the list of foods that may be causing problems. The next step is a defined food elimination diet. This can be an avoidance diet of patient-defined triggers, a "hypoallergenic" diet for four to six weeks, or a rotation diet, in which new foods are introduced sequentially. Once symptoms have been associated with a food or food group, the intolerance can be confirmed with a "challenge" in which the patient is given the suspect food and then watched to see if symptoms develop (This isn't practical when symptoms are severe).

Sometimes you can overcome food intolerances by avoiding the food or foods to which you're sensitive for a few months. Then, you can try reintroducing each food (separately) on a regular basis beginning with tiny amounts. Eat some every day, gradually increasing the portions. With luck, you'll find that you are able to develop tolerance to foods that have previously bothered you."

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Thanks, Tom! :)

The posted article (in the publications section here) lopped off those paragraphs :

"Meanwhile, nearly everyone who takes these tests is told he or she has some kind of intolerance. One Florida lab boasts that "95 percent of the people we've tested show that one or more foods they regularly eat cause a toxic reaction in their body."

Proponents of the testing, primarily integrative physicians or alternative health practitioners, argue that the tests can be useful even if they are imperfect. IgG-based testing "showed promise, with clinically meaningful results," according to a 2010 review published in the journal Nutrition in Clinical Practice."

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The science is incomplete and the article completely ignores the effects of leaky gut, which is what the "celiac pill" from Alba Therapeutics (and Dr Fasano) actually treats.

I may be wrong (won't be the first time or the last, no doubt :lol:) but I think many celiacs tend to have "leaky guts" i.e. increased gut permeability because of the increased zonulin protein production in some people when they eat wheat. I talked about this with my GI doc. He says he thinks so, too.

Geesh. I'm hoping mine "seals up" pretty soon. :rolleyes:

http://www.umm.edu/news/releases/zonulin.htm

http://www.ncbi.nlm.nih.gov/pubmed/16635908

http://www.news-medical.net/news/20090908/Scientists-solve-the-mystery-of-zonulins-identity.aspx

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Thanks for all the replies! I'm toying with the idea of testing the test to see if there could be any truth to it. There are definitely a couple negative results for foods I know I react to, and some positive results that seem totally of, but why not experiment a little bit and see if a few of them could be a hidden suspect :)

The reads on leaky gut are definitely interesting. I really hope that with time everything heals up for all of us with leaky gut problems!

Mom23, what is the genetic issue you have with a certain food, if you don't mind me asking?

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Carebear,

I think in the end, seeing how we react to a food is the only way to tell. It's the delayed responses that are the bugger to sort out.

I have no IgE allergies except dust mites (so the tests all say), yet you should see my eyes, face and throat swell when I eat too much shellfish. As I mentioned above, no IgG results either, except soy. (not even wheat gluten --- :blink: )

I have problems with MSG and something ELSE still bothers me BUT I cannot figure it out for the life of me, despite elimination diets, rotations diets and 2 years of spiral notebooks filled with what I am eating. I give up! :rolleyes:

As long my gut is still compromised, I feel as if anything that provokes inflammation is a possibility.

I hope you find your culprit(s) and feel better soon!

Cheers, IH

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I may be wrong (won't be the first time or the last, no doubt :lol:) but I think many celiacs tend to have "leaky guts" i.e. increased gut permeability because of the increased zonulin protein production in some people when they eat wheat.

...

Of course you're not wrong, it's pretty well-established that most celiacs get leaky gut, unless gluten-free very early.

That was my point in bringing up Alba & Dr Fasano. It IS well-known.

So for the Dr dismissing food intolerance blood tests to qualify statements w/ "gut-associated immune system" invalidates those statements w/ respect to real world celiacs' leaky intestinal walls.

Can I infer you agree then that the article completely ignores the very-relevant leaky gut situation?

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Of course you're not wrong, it's pretty well-established that most celiacs get leaky gut, unless gluten-free very early.

That was my point in bringing up Alba & Dr Fasano. It IS well-known.

So for the Dr dismissing food intolerance blood tests to qualify statements w/ "gut-associated immune system" invalidates those statements w/ respect to real world celiacs' leaky intestinal walls.

Can I infer you agree then that the article completely ignores the very-relevant leaky gut situation?

I read Dr. Guadalino's quote as saying that he did not see how food intolerances are caused by eating a repetitive diet; thus overloading the immune system and the body responds by rejecting those foods.

He does not mention intestinal permeability in regards to celiac.

I think there is no doubt that celiac guts are"leaky" to some degree. (IMHO)

I do not know what to think, to be honest. I know the immunologist I worked with rolled his eyes and told me they were not valuable at all. (I did it anyway and found them unreliable in my case, which I what I said at the beginning.)

Here is all I can find:

Some Celiacs have intestinal permeability from over-production of zonulin.

But, I do not know how that translates to how IgG tests are accurate for other food intolerances. (These seem to be two separate topics to me.)

I cannot seem to find anything in Pub Med that says IgG testing is accurate. Have you seen anything? The only information I can find is from the labs that provide the testing.

Hey, maybe Skylark knows. She has access to more published research than anyone I know. :)

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He does not mention intestinal permeability in regards to celiac.

I brought up leaky gut specifically because a Dr you quoted in HIS dismissing of the tests qualified his statement w/ the preface "in the gut-associated immune system".

I'm saying there are things going on beyond the gut which shouldn't be ignored. They're explicitly excluded by that preface.

I think I should've been more clear when I wrote "the science is incomplete". I was referring to the testing of intolerances, not the existence of the leaky gut I'd brought up.

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The testing for intolerances WILL someday be accurate & reliable.

I've never said current tests are great, just that they can be useful. Not to everyone, of course, bu they're not usless either. The Trib article, w/out its positive aspects, almost says the tests are just a waste of $5000, whereas a number of forum members have recently weighed in on the 2 active threads that they found it helpful and it cost in the hundreds, not thousands.

Heck even the celiac panels everyone recommends still get what % wrong?

When the PCP & referred-to specialists all say "you're fine" & to try an anti-depressant, ppl have no choice but explore outside current conventional wisdom. I can barely believe that I even spent $ on someone telling me taking drops of their magic water imbued w/ the frequencies of stuff determined by goofy electrical responses blahblah I don't recall it all . .. ..anyway, THAT was a useless waste of time & money & the Trib article was unnecessarily slanted.

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Ya know .. .imho.

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The OP asked "how accurate were these IgG tests for you guys?"

I told her my experience.

I provided a few articles.

People can do what they want with the information.

I fear you think I am arguing against you for some reason. I assure you, I am not. I am all out of info. :)

Whatever anyone wants to do, they should do it.

Some people think they are valid. Some don't.

I don't know what the percentage is now re: celiac panels.

My tests were falsely negative. Repeatedly :rolleyes:

So, based on that erroneous testing, and testing done by a "integrative doctor" that included this IgG testing--which also said I had no IgG anitbodies to wheat or gluten?--I was left to spiral down in my health so badly I was deathly ill and in horrific pain.

As a result, I have NO faith in any testing.

That's just me.

Again, if people want to do it, they should.

I WAS one of those people who was told for years to take drugs and SSRIs, etc. and I went outside the box to NDs and Holistic docs, blah blah blah...and it was celiac all along. Had I not been so persistent, I'd be dead.

I agree--hope they find a more accurate way to test.

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I haven't disputed anyone's experiences. I had to point out that the Drs quote doesn't apply once leaky gut is taken into account. Specialists LOOOOVE an isolated system.

IH, your 1st reply called it a waste of $$ and cited the article.

It's a Chicago Tribune article (by the "health & fitness reporter") w/ pretty obvious weaknesses, not something in a medical journal.

My disputing the article wasn't intended to be seen as a disagreement w/ you personally.

The article just shouldn't be used as ammo to support calling the the tests a waste of money.

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No, Tom, I'm sorry, but in response to the OP, all I said was "In MY opinion, I THINK the tests are a waste of money."

She asked "What was YOUR experience."

I gave mine.

I cited the article, culled from the articles posted on THIS website by admin --as something for people to mull over--that maybe IgG testing may not be accurate.

I did not use it as "ammo".

I gave my thoughts. I'm done.

To the OP, sorry hon...just trying to help.

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There seems to be a dispute about nothing here. Let's all give it a rest. I think the original question has been addressed.

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