Celiac Negative, Low Iga, What Next?

[zeeclass6]

I have been gluten-free for 3 weeks at the suggestion of a new Endocrinologist I am seeing. I have Hashimoto's Thyroiditis. I am a 51-year-old woman.

My Celiac blood test came back negative, but I have very low IGA. Apparently this makes it difficult to get an accurate test result. I have been told that I need to have tests for IGG.

I don't totally understand this realm or what the tests are. I would like to get some additional testing to help determine whether I truly have sensitivity to gluten, but also casein and other things, other grains, too. I just want to KNOW! I want DATA!!!! I don't want to just keep guessing. People have suggested that I avoid dairy, but I have no reason to believe that dairy is a problem for me, aside from lactose intolerance (and that is easily solved by taking a Lactaid pill).

I am getting a genetic test done by Entero Lab (cheek swab sample) to tell me if I'm genetically pre-disposed to gluten problems. Other than that....nothing.

Can you please tell me the following:

1. What other tests should I get done? Are they all blood tests?

2. What sort of doctor would I go to to get these tests? What sort of doctor truly understands this stuff? My regular allergist said he doesn't do this sort of testing. My regular GI doctor doesn't seem to know what to do. So who, then?

If anyone here is in the SF Bay area and can recommend a doctor, I would appreciate it.

Thank you for your help and guidance.

[mushroom]

I have been gluten-free for 3 weeks at the suggestion of a new Endocrinologist I am seeing. I have Hashimoto's Thyroiditis. I am a 51-year-old woman.

My Celiac blood test came back negative, but I have very low IGA. Apparently this makes it difficult to get an accurate test result. I have been told that I need to have tests for IGG.

I don't totally understand this realm or what the tests are. I would like to get some additional testing to help determine whether I truly have sensitivity to gluten, but also casein and other things, other grains, too. I just want to KNOW! I want DATA!!!! I don't want to just keep guessing. People have suggested that I avoid dairy, but I have no reason to believe that dairy is a problem for me, aside from lactose intolerance (and that is easily solved by taking a Lactaid pill).

I am getting a genetic test done by Entero Lab (cheek swab sample) to tell me if I'm genetically pre-disposed to gluten problems. Other than that....nothing.

Can you please tell me the following:

1. What other tests should I get done? Are they all blood tests?

2. What sort of doctor would I go to to get these tests? What sort of doctor truly understands this stuff? My regular allergist said he doesn't do this sort of testing. My regular GI doctor doesn't seem to know what to do. So who, then?

If anyone here is in the SF Bay area and can recommend a doctor, I would appreciate it.

Thank you for your help and guidance.

The following are the tests that make up the celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

You will lnotice that only two of them inclulde IgG, which is an antibody separate from but similar to IgA. The test at the bottom measures the total amount of IgA in the blood. If this result is below normal, it means you do not make enough IgA to validate the IgA testing, so they need to run the IgG to get a valid result for you.

I don't know which tests they ran on you. A lot of doctors run only the IgA tTG and total serum IgA. Since your IgA was low he should have run the IgG versions of the other tests. If these were also low, then your blood testing was negative. I see, looking back at your post that you were told you needed these IgG tests. Apparently you did not have them?? And now your endocrinologist has had you three weeks gluten free This will, unfortunately, at this point invalidate the IgG testing also, because you have to be eating gluten for the body to produce the antibodies that the blood testing measures. If you want to have the blood testing now you will have to go back on gluten for 2-3 months to build up the antibody levels in the blood again. The other testing is an upper endoscopy with biopsies taken from the small intestine, but again, you have to be on a full gluten diet for this testing to be valid as healing starts to take place in the absence of gluten.

As for finding a doctor who is celiac literate, that is the $64M question. They are rare but do exist. Sometimes, it is a PCP. Sometimes a gastroenterologist, but not at all guaranteed. We have a whole thread on the forum of people seeking knowledgeable doctors all over the country. Sometimes your local Celiac Society can give you a recommendation. Others have travelled to recognized celiac centers in Maryland, Chicago, etc., when they can't find help locally.

I will say this, if you are lactose intolerant, that increases the likelihood that you are celiac. Hashimoto's increases the likelihood that you are celiac.

Some people do do the stool testing through Enterolab (you can order this yourself online and doctors do not consider it definitve). I can give you some idea if you are intolerant to casein, corn, soy, if you are digesting fats properly. I am not sure if they test fpr IgG antibodies (I believe only IgA); the theory is that antibodies linger longer in the stool than in the blood and if you were to do it now it would be just as valid as if you had done it three weeks ago.

So what was your endocrinologist's plan (if any?) in having you go gluten free without completing the testing? Was it he who told you you needed the IgG testing? I am a bit at a loss here to understand what is going on.

[zeeclass6]

OK, here is the story in a nutshell.

For 15 years, I have been seeing Endocrinolgist Dr. F. She is the one who ran the Celiac panel that showed negative result and low IGA. She didn't properly understand what it meant and did not advise me to get any further testing.

There are various reasons why I have decided to stop seeing Dr. F. She has missed some very important things (like a recently found Vitamin B-12 deficiency -- I am the one who had to insist that she do the test based on my symptoms; she didn't think it was necessary....and the list goes on from there).

So I sought out other doctors. I found Dr. L. and saw him recently. HE is the one who told me to stop eating gluten. He did not advise me to get any other tests for gluten or food intolerances. But after being gluten-free for 2 weeks, I realized that I wanted to know for sure what was really going on, because I felt better being gluten-free (less bloating and gas for sure).

So I sent for an Entero Lab stool test. I enclosed a copy of my Celiac negative test results with my lab sample. They contacted me and told me that I would be wasting my money to get the stool test because I have low IGA. But they said they could still perform the cheek swab genetic test. I am waiting for the results...should have them next week, I think.

And that's where I stand today. I would really like to know for sure whether I have a real detectible problem with gluten or specific grains; caseain, or anything else.

I'm sorry to hear that if I wanted to get an IGG test I would need to start eating gluten again. I've been gluten-free for 3 weeks. But at the end of March I may be going with my family for a trip to Europe for a week. I have absolutely no idea how I could possibly stay gluten-free in France and Spain for 10 days. So....if I were going to get the IGG test, that would be an opportunity to start eating gluten again, I suppose. I'm sure that last statement horrifies you. But I'm not sure that eating gluten again will send me into a tailspin. I never had the digestive signs of Celiac. I ate gluten my entire life and didn't think I had any sort of problem with it. In retrospect, now that I've removed it, I can feel the difference. I have not done a gluten challenge yet. I was thinking of trying it this weekend....having a few regular crackers to see what happens, if anything (besides perhaps some gas or the return of cravings).

So that's my story. I appreciate your advice. And it's very disheartening to find out that most doctors don't understand this stuff. That really surprises and disappoints me.

The following are the tests that make up the celiac blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

You will lnotice that only two of them inclulde IgG, which is an antibody separate from but similar to IgA. The test at the bottom measures the total amount of IgA in the blood. If this result is below normal, it means you do not make enough IgA to validate the IgA testing, so they need to run the IgG to get a valid result for you.

I don't know which tests they ran on you. A lot of doctors run only the IgA tTG and total serum IgA. Since your IgA was low he should have run the IgG versions of the other tests. If these were also low, then your blood testing was negative. I see, looking back at your post that you were told you needed these IgG tests. Apparently you did not have them?? And now your endocrinologist has had you three weeks gluten free This will, unfortunately, at this point invalidate the IgG testing also, because you have to be eating gluten for the body to produce the antibodies that the blood testing measures. If you want to have the blood testing now you will have to go back on gluten for 2-3 months to build up the antibody levels in the blood again. The other testing is an upper endoscopy with biopsies taken from the small intestine, but again, you have to be on a full gluten diet for this testing to be valid as healing starts to take place in the absence of gluten.

As for finding a doctor who is celiac literate, that is the $64M question. They are rare but do exist. Sometimes, it is a PCP. Sometimes a gastroenterologist, but not at all guaranteed. We have a whole thread on the forum of people seeking knowledgeable doctors all over the country. Sometimes your local Celiac Society can give you a recommendation. Others have travelled to recognized celiac centers in Maryland, Chicago, etc., when they can't find help locally.

I will say this, if you are lactose intolerant, that increases the likelihood that you are celiac. Hashimoto's increases the likelihood that you are celiac.

Some people do do the stool testing through Enterolab (you can order this yourself online and doctors do not consider it definitve). I can give you some idea if you are intolerant to casein, corn, soy, if you are digesting fats properly. I am not sure if they test fpr IgG antibodies (I believe only IgA); the theory is that antibodies linger longer in the stool than in the blood and if you were to do it now it would be just as valid as if you had done it three weeks ago.

So what was your endocrinologist's plan (if any?) in having you go gluten free without completing the testing? Was it he who told you you needed the IgG testing? I am a bit at a loss here to understand what is going on.

[mushroom]

And it's very disheartening to find out that most doctors don't understand this stuff. That really surprises and disappoints me.[/quote[

Yes, it is disheartening,i sn't it? Unfortunately, that is the reason this forum is here, because there is so little well-informed information about celiac. There are only a few medical professionals on here occasionally, most of us are celiacs like yourself who have fouond such a paucity of ireliable nformation in the medical profession and want to help others avoid the mistakes we made. Sometimes you find us too late, as in your case where you have already been gluten free for three weeks. Strangely enouogh, probably the biggest offenders in lack of knowledge are the gastroenterologists whose speciallty this is supposed to be. But their professors in medical school have all learned that celiac is a very rare disease, that you have to be emaciated betwe one can consider that you have it, and that it mostly occurs in children as failure to thrive. One wonders if any of them keep current with the medical literature Most of them are unfamiliar with its association with other autoimmune diseases and even after you have been tested and diagnosed don't know what they should do next. It is exasperating

Okay, rant over, back to your situation. Before you consider pigging out on gluten on your vacation (and I admit the idea must sound pretty tempting) French croissantas and baguettes, Spanish tapas, ahhh! But before you do this, do do what you are contemplating, a gluten challenge. Even if you have not had any GI symptoms up till now, there is no way of knowing what will happen when you start consuming gluten again, and one would not want to spoil an otherwise fab trip to Europe by being sick and miserable the whole time one was there

If you feel better gluten free the chances are pretty good that if you are not celiac you are at least gluten intolerant. The B12 deficiency is a good indicator. What other symptoms led to your getting the blood tests?

I just can't say how sorry I am for the position you find yourself in. You have the option of reglutening yourself, or self-dianosing as I did and not looking back. If you feel you will always second guess yourself you may need to do the 2--3 month challenge, if you can make it through

Stay in touch and ask any other questions that come to mind.

[zeeclass6]

Yes, I totally agree that my first foray back into gluten should NOT be on vacation! I need to safely test it at home first, at least a few weeks before going to Europe.

I would really like to get those IGG tests done, but have to figure out WHO would do them for me. Maybe I should send a fax to my GI doctor, because up to now I have been communicating with her assistant and I think the message has been bungled.

The reason I'm so surprised to find that doctors don't understand Celiac and intolerances is that it has become such a hot publicized topic in the past few years. There are so many gluten-free products now, even beer. I just assumed that doctors were in line with this.

Unfortunately, what you say about doctors echos what I have found in the thyroid community. You'd THINK that Endocrinologists would understand thyroid issues properly. Well, they don't. In fact, Dr. F, who I had seen for 15 years, and who is supposed to be a terrific doctor associated with a prestigious university, has been "keeping me sick" for all these years by not testing me for the right things, and keeping me on only Synthroid which has kept me essentially still Hypothyroid -- because all she looks at is my TSH level. Which I have learned recently is the WRONG approach.

Anyway, I could get on a huge soapbox regarding thyroid issues.

There is such a fundamental problem in America, or even perhaps the world -- with medical doctors today. They seem to exist to write prescriptions, NOT to figure out what is wrong with you or get you better. What are they learning in medical school other than how to whip out the prescription pad, and look at their watch (because your 15 minutes are up)? Sheesh....

[zeeclass6]

Oh, you asked what symptoms led me to get the blood tests. Well, I had read in various places that if you have thyroid problems you should get tested for Celiac. I got tested 10 years ago and it was negative. I was told not to worry about it.

Then last year I began to notice that my lactose intolerance seemed to be getting worse. Even if I took 2 Lactaid pills with dairy I still had a lot of gas and bloating. At one point, it got so bad that I decided to give up all dairy AND overt gluten (no cookies, crackers, or bread) for a few days. That seemed to settle me down for a while. I went back to eating normally. Then it happened again a few weeks later.

Somewhere along the way I read information about auto-immune conditions and gluten. Recently I'd had what seemed to be a big auto-immune attack. My muscles were aching and my hair was falling out in droves all of a sudden, so I began doing some research. Maybe it was at the Stop The Thyroid Madness Facebook group; I don't remember. But I became aware of the gluten connection. So I asked Dr. F to test me for Celiac again. And stupidly, she totally misunderstood the meaning of the low IGA result and told me not to worry about it. Dr. F never said a word to me about gluten. She also missed my B-12 deficiency.

Thanks to the Stop The Thyroid Madness group and book, I got additional testing for iron levels. Now it looks like I may have some sort of anemia. My Hemoglobin and Hematocrit are fine. But my Ferritin is low, my TIBC is high, and my %Saturation is very low. I have read that these are classic lab results of anemia in many places on the Web.

Late last year, I saw a doctor from The Holtorf Group (they specialize in thyroid, hormones, fibro, etc) I also found out, from a blood test done by the Holtorf doctor, that I seem to have some sort of problem with coagulation (which was news to me!) She confirmed with other tests that despite my TSH being good, I was still quite hypothyroid -- which explained the lingering depression, muscle aches, etc. But the Holtorf Group is extremely expensive and they aggressively push their private label supplements at you. For example, the office visit was $395 and on top of that, they wanted me to buy almost $1,000 in their private label supplements. I did not buy them. When I tried to call the doctor later to ask some specific questions, I could not get her on the phone. She is overbooked and very busy. She just kept telling me, via her assistant, to take the supplements. I am not going back there. I will give the doctor credit, however, for doing MOST of the right tests and uncovering a potential problem with my blood coagulation.

I am seeing a Hematologist in a few weeks to see if he can tell me what is really going on with my blood. Am I really anemic? Why do I have Fibrin in my blood? What does this coagulation problem mean, is it serious, do I need treatment, etc?

I'm still trying to figure out whether I should continue to avoid gluten or not. My digestion seems to be better, with less gas, less bloating, and less burping. For the most part, my reflux has disappeared. But I have also totally lost my appetite and food does not seem appealing to me at all anymore, which worries me.

[nora-n]

In Spain, they know about gluten and celiac, and there are lots of gluten-free items in larger stores, including the cheap store mercadona.

Mac Donalds has gluten free hamburgers in Spain, in all mac donalds restaurants.

Print out some cards.

It is quite possible to eat gluten free in France too.

About Enterolab, their tests are IgA but if you do not have very low IgA the tests might be positive anyway, or just below the threshold.

About IgG type tests, the IgG type antibodies usually take much longer time to go down! So they can still hang around for some months.

[nora-n]

here is where to get french gluten free pastries

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