Is This Celiac Disease Or Gluten Intolerance Or Something Else?

[Tidings]

Hello folks,

Just found this helpful site and would like to post a brief description of my situation and ask your opinion as to whether this sounds like Celiac disease, Gluten intolerance, or something else...

Quick history:

Developed C.F.S. (chronic fatigue syndrome) over two decades ago and have had many health problems ever since, especially digestive tract troubles. About ten years ago, on a flight across country, airlines offered a gluten-free meal, so I decided to try it, and during my ten-day vacation, I avoided all wheat flour and the like. Noticed immediately that the "midriff bulge" disappeared! Seemed to feel better during this dietary experiment, but soon went back onto gluten.

In recent years, have "experimented" with a gluten-free diet, because it seemed like I could not digest white flour (pizza, pastries, and so on) and always had clogged intestines whenever I ate things like pizza or shortbread, etc. After many bouts with G.I. troubles and pain, decided about three years ago to just go GLUTEN FREE and see what would happen. Have been MOSTLY gluten free ever since, but do once in a while "fall off wagon" with a pizza or dessert containing gluten. Recently (over the past month or so) had pizza and a carrot cupcake a time or two, and have had EXTREME PAIN and clogged intestines and swollen abdomen and soreness in midregion. Had always heard that Celiac Testing would be inconclusive if you have been off gluten for a long while, so had not been tested.

Test Results:

Recently needed to have other bloodwork done, partly because of all this PAIN & DYSFUNCTION of late, so I asked Doctor to add the Celiac Panel testing, realizing the results would probably be negative and not tell much. Just got the test results back, which were:

Endomysical Antibody IgA - Negative

t-Transglutaminase (tTG) IgA - 1 (Negative 0 - 3)

Immunoglobulin A, Qn, Serum - 526 High - mg/dL Range: 70-400 <- What does this test mean?

Given the above, does it appear that I DO or DO NOT have Celiac disease, or Gluten Intolerance; or are these tests inconclusive because of avoiding gluten for a long time, and then only eating gluten sporadically? Hope somebody can help clarify things, as this is all very confusing.

Are there other tests that would make my situation more clear, or is this enough, along with all my side-effects from eating gluten, to accept that my condition really is Celiac disease and that I have to be on a permanent gluten-free diet?

Other Symptoms/Conditions:

*Often have EXTREMELY ITCHY Skin, especially head, back and legs

*Severe Insomnia (ever since contracting C.F.S.)

*Hair loss

*High Blood Pressure

*Glaucoma

*Many food sensitivities

*Extreme Fatigue

*Heart Arrhythmias, including Atrial Fibrillation

P.S. The doctor, upon seeing these results, said "You might want to avoid flour..." ???

[Tidings]

Hi again,

It's nice to see the "84 Views" on my question, but disappointing to see no Replies yet.

Have to see doctor (who seems to know little to nothing about Celiac) again on Wednesday of this week and am hoping for some input on my above questions from the Celiac 'experts' on this forum. :-)

P.S. Hope this question didn't get posted in the wrong thread. Looking forward to hearing from some of you. Cheers--and have a nonglutenized day!

[Dixiebell]

I am not positive what that test is for but I have heard that you need to be eating four slices of bread a day for several weeks before the blood tests and biopsy.

[Lisa]

Hello folks,

Just found this helpful site and would like to post a brief description of my situation and ask your opinion as to whether this sounds like Celiac disease, Gluten intolerance, or something else...

Quick history:

Developed C.F.S. (chronic fatigue syndrome) over two decades ago and have had many health problems ever since, especially digestive tract troubles. About ten years ago, on a flight across country, airlines offered a gluten-free meal, so I decided to try it, and during my ten-day vacation, I avoided all wheat flour and the like. Noticed immediately that the "midriff bulge" disappeared! Seemed to feel better during this dietary experiment, but soon went back onto gluten.

In recent years, have "experimented" with a gluten-free diet, because it seemed like I could not digest white flour (pizza, pastries, and so on) and always had clogged intestines whenever I ate things like pizza or shortbread, etc. After many bouts with G.I. troubles and pain, decided about three years ago to just go GLUTEN FREE and see what would happen. Have been MOSTLY gluten free ever since, but do once in a while "fall off wagon" with a pizza or dessert containing gluten. Recently (over the past month or so) had pizza and a carrot cupcake a time or two, and have had EXTREME PAIN and clogged intestines and swollen abdomen and soreness in midregion. Had always heard that Celiac Testing would be inconclusive if you have been off gluten for a long while, so had not been tested.

Test Results:

Recently needed to have other bloodwork done, partly because of all this PAIN & DYSFUNCTION of late, so I asked Doctor to add the Celiac Panel testing, realizing the results would probably be negative and not tell much. Just got the test results back, which were:

Endomysical Antibody IgA - Negative

t-Transglutaminase (tTG) IgA - 1 (Negative 0 - 3)

Immunoglobulin A, Qn, Serum - 526 High - mg/dL Range: 70-400 <- What does this test mean?

Given the above, does it appear that I DO or DO NOT have Celiac disease, or Gluten Intolerance; or are these tests inconclusive because of avoiding gluten for a long time, and then only eating gluten sporadically? Hope somebody can help clarify things, as this is all very confusing.

Are there other tests that would make my situation more clear, or is this enough, along with all my side-effects from eating gluten, to accept that my condition really is Celiac disease and that I have to be on a permanent gluten-free diet?

Other Symptoms/Conditions:

*Often have EXTREMELY ITCHY Skin, especially head, back and legs

*Severe Insomnia (ever since contracting C.F.S.)

*Hair loss

*High Blood Pressure

*Glaucoma

*Many food sensitivities

*Extreme Fatigue

*Heart Arrhythmias, including Atrial Fibrillation

P.S. The doctor, upon seeing these results, said "You might want to avoid flour..." ???

Sorry for the delay. Weekends are often slow around here.

Here is some information regarding testing:

Open Original Shared Link

Gluten intolerance is offers a wide spectrum, with Celiac Disease as the as the autoimmune relation.

Many of your described symptoms correlate with the over 200 symptoms associated with Celiac, and it's associated illnesses.

With your partial gluten free tenure, it would be a possibility that your blood work would not be accurate enough for Celiac testing.

You may or may not have Celiac Disease, but it appears clear that you do have an issue with gluten.

[Tidings]

Hi Lisa,

Thanks so much for replying. You said, "You may or may not have Celiac Disease, but it appears clear that you do have an issue with gluten." Boy, is that an understatement! LOL.

Have a feeling that more testing will be required for any solid diagnosis. Having the test result for the "Immunoglobulin A Serum" on the HIGH side is one thing that's confusing and there does not seem to be much info online about it. If anybody knows more precisely "what" it means to have a HIGH Immunoglobulin A Serum count, please advise. (i.e., Is this "Immunoglobulin A" referring solely to anti-gliadin antibodies or just an indication that there are lots of antibodies circulating in the blood that could be a reaction to other things instead of or as well as gluten?) (Apparently, high levels of Immunoglobulin A could also indicate kidney disease?)

Thanks also for the link to the University of Chicago Celiac Disease Center site. It has some very informative sections and it is inspiring that they're working so hard to educate and help folks with Celiac. It's also great that they have a Celiac Hotline: 773-702-7593.

[Tidings]

I am not positive what that test is for but I have heard that you need to be eating four slices of bread a day for several weeks before the blood tests and biopsy.

Hi Dixiebell,

Wow--that's a lot of gluten! Based on how sensitive my innards seem to be toward gluten, don't think I'd make it past the first or second day of overindulging on gluten like that! (I'd definitely make it Pizza or Carrot Cake, instead of boring Bread, though! LOL)

It seems sort of crazy that we have to "repollute" ourselves with gluten, just to "prove" we have a problem with it. (Sort of like hitting your head with a hammer just to enjoy how good it feels when you stop!) Sigh...

[Marz]

If anybody knows more precisely "what" it means to have a HIGH Immunoglobulin A Serum count, please advise. (i.e., Is this "Immunoglobulin A" referring solely to anti-gliadin antibodies or just an indication that there are lots of antibodies circulating in the blood that could be a reaction to other things instead of or as well as gluten?) (Apparently, high levels of Immunoglobulin A could also indicate kidney disease?)

Hi there,

Can't really say what a high result means, but the total IgA test you refer to is usually just done to check if you have a IgA deficiency, which would invalidate the other IgA tests. I don't think a high level is cause for concern, but check with your doctor when you see him Your other tests were negative, which is either because you don't have "classic" celiac disease, or you've been gluten-free for too long and your antibodies are too low to pick up.

By the way, lots of gluten-intolerant people get negative blood results, and still maintain a 100% gluten free diet. There are some theories that seronegative gluten intolerance (negative blood tests), is just "baby" celiac waiting to be activated. In other words, eat gluten at your own risk, you might develop full blown celiac (plus the other auto-immune problems that come with it) later on.

I'd say you've had a good result cutting gluten out, you should stick with the diet if it works for you

[ToriMartin]

I wish I could help but I'm not any help here... I seem to be asking more questions than anything.

I have always been allergic to Wheat Starch & Gluten. My worst problems have been over the last 12 years & getting worst. Hair loss, muscle & joint soreness, the Brain Fog is the worst! Weight Gain, fatigue, & lots more. I have blamed it on being Hypothyroid but recently have figured out that the Thyroid is probably a cause of the Gluten.

I asked the other day if it was Gluten Intolerance or Celiac... Still not sure... But, no matter what I'm staying away from gluten! I have also found that I can't have milk products, corn, avocado & possibly Garlic powder, testing that one... You really should do like I did... Only Veggies & meat for a week. Introduce other foods one at a time & see what happens. I notice I get bloated & IBS the next morning... Avacado gives me sinus pressure & a headache.

I'm far from being an expert... But if I were you I would stay 100% away from Gluten... It's just not worth it...

[IngridBeth]

I'm pretty new at this myself being only about 5 weeks gluten free, but I can tell you that

First, your symptoms sound a lot like mine (Fibromyaglia diagnosis in my case, high bp, etc.)

Second, my doctor acknowledged that blood tests can be misleading and based on a number of other factors, he diagnosed me with "probably Celiac but certainly gluten intolerance." In other words, I can't eat gluten either way. However many of my FM symptoms and a few blood test results that WERE "abnormal" makes him feel that Celiac is more likely.

I know it helps to have a diagnosis, but at least your doctor is pointing you in the right direciton, no? Good luck!

[bincongo]

I have heard that the only certain way to diagnose Celiac is with a biopsy of the small intestine that is done with an endoscopy but I don't think doctors do this on a routine basis. I was diagnosed by biopsy but had it done for an unrelated problem. I guess in a way I feel blessed that I was "accidently" diagnosed because in spite of symptoms I thought it was just old age coming on.

[Skylark]

Endomysical Antibody IgA - Negative

t-Transglutaminase (tTG) IgA - 1 (Negative 0 - 3)

Immunoglobulin A, Qn, Serum - 526 High - mg/dL Range: 70-400 <- What does this test mean?

Given the above, does it appear that I DO or DO NOT have Celiac disease, or Gluten Intolerance; or are these tests inconclusive because of avoiding gluten for a long time, and then only eating gluten sporadically? Hope somebody can help clarify things, as this is all very confusing.

You already seem to know the answer. The tests are inconclusive because you are not eating enough gluten. High IgA is associated with autoimmune diseases like lupus, rheumatoid arthritis, liver disease, or possibly multiple myeloma (which your doctor would have picked up so don't worry). Your chronic fatigue may have some autoimmune component to it.

Are there other tests that would make my situation more clear, or is this enough, along with all my side-effects from eating gluten, to accept that my condition really is Celiac disease and that I have to be on a permanent gluten-free diet?

It's really annoying, but there is no formal test for celiac disease for people not eating much gluten. All the tests look for antibodies and damage, and it takes a lot of gluten to get a positive result. If you must have a formal "celiac disease" diagnosis to be willing to avoid gluten, you're going to have to gluten challenge and retest. Celiac researchers say you have to eat the equivalent of 4 slices of bread a day for a month to have a chance of getting the antibodies. Even then, there is a 20% false negative rate.

You could try genetic testing. If you're DQ2 or DQ8 there is a better chance it's celiac. The genetic test is not diagnostic, though.

If the gluten challenge is too much to contemplate (as it was for me) it's probably safest to just eat as if you were celiac.

[Tidings]

Thanks to all of you who have posted your thoughts in this thread. And yes, the thought of a "gluten challenge" does induce a certain amount of queasiness, based on recent SEVERE pain and problems after enjoying a carrot cupcake and, the week before, some pizza!

Have kept a journal for years that substantiates the growing suspicion (conviction?) that either wheat or gluten induces A LOT OF PAIN & PROBLEMS. It's just so hard to accept a future without pizza (somehow, it seems to be THE hardest gluten-laden food to relinquish!). However, last week we found a pizza that is "almost" as good as gluten-loaded pizza. Some of you may have already found and enjoyed it. It is by Glutino (their gluten-free breads are good, too); the one I tried was their "spinach and feta" model. I added some gluten-free pizza sauce, mushrooms and black olives and sprinkled a bit of fennel (the spice that's in Italian sausage) on it, and then followed their baking instructions. Surprisingly good!--albeit a bit pricey. I think it cost $5-something at Whole Foods. It really was more like a pizza-COOKIE, based on the small size. But it was tasty, actually SATISFIED my craving for pizza, and the crust was NOT BAD AT ALL. So maybe there is hope! :-)

[Skylark]

Around here, there are at least four different restaurants where I can get gluten-free pizza. Have you looked for a celiac-friendly restaurant list in your area?

[ravenwoodglass]

Thanks to all of you who have posted your thoughts in this thread. And yes, the thought of a "gluten challenge" does induce a certain amount of queasiness, based on recent SEVERE pain and problems after enjoying a carrot cupcake and, the week before, some pizza!

Have kept a journal for years that substantiates the growing suspicion (conviction?) that either wheat or gluten induces A LOT OF PAIN & PROBLEMS. It's just so hard to accept a future without pizza (somehow, it seems to be THE hardest gluten-laden food to relinquish!). However, last week we found a pizza that is "almost" as good as gluten-loaded pizza. Some of you may have already found and enjoyed it. It is by Glutino (their gluten-free breads are good, too); the one I tried was their "spinach and feta" model. I added some gluten-free pizza sauce, mushrooms and black olives and sprinkled a bit of fennel (the spice that's in Italian sausage) on it, and then followed their baking instructions. Surprisingly good!--albeit a bit pricey. I think it cost $5-something at Whole Foods. It really was more like a pizza-COOKIE, based on the small size. But it was tasty, actually SATISFIED my craving for pizza, and the crust was NOT BAD AT ALL. So maybe there is hope! :-)

I love pizza and have it about once a week. I get Kinnickinnick pizza crusts at a package of 4 for about 9 bucks. I add my own cheese and whatever toppings I want. The crusts are nice and much like the crusts I remember from my gluten days. If I am feeling like taking the time and want an awesome deep dish I get Gluten Free Pantry's French Bread mix and follow their directions to make it as a pizza crust. I usually chill it for a bit before I spread it. A real treat when I have time.

[Marz]

It's just so hard to accept a future without pizza (somehow, it seems to be THE hardest gluten-laden food to relinquish!). However, last week we found a pizza that is "almost" as good as gluten-loaded pizza.

Since we don't have any ready-made gluten-free pizza crusts here, I just make my own from corn meal. Can make it either crispy by making the dough layer very thin, or slightly doughy. Tastes pretty good, and you can make up a whole batch, cook it up and freeze it for later.