I'm Not Sure If I Have Celiac. Please Help!

[loxleynew]

Hey everyone. So as the title goes I'm not sure what's wrong with me. I have some test results and in short have some symptoms of celiac. The tests Ive done have been endoscopy (twice) and every other GI test under the sun. I also have had the genetic blood test done and it came back negative for the genes. The biopsys were negative as well. The blood work has all been negative except for what I just got today.

Gliadin AB IGA = 3

Gliadin AB IGG = >100

Transglutaminase IGA AB = 3

So basically the IGA were both fine but the IGG was so high! Normal ranged are like 11-17 and I was over 100!

Maybe this means nothing? My doctor wants me to go on a wheat free diet but I'm not sure with the genetic blood test being negative if that is worth it?

Thanks!

-Aaron

[veggienft]

Follow your doctor's advice. Testing "negative" on a gene test is essentially meaningless. You were probably tested only for the more common genetic manifestations of DQ2 and DQ8. The more researchers look for gluten-sensitivity genes, the more they find.

Low blood anti-tissue transglutaminase IgA means your bloodstream had very little stomach anti-gliadin antibody. This could mean you don't have intestinal celiac disease. Or it could mean you're one of the large minority of celiacs who don't pass IgA antibodies into their bloodstreams. A fecal IgA test might shed more light. However...........

High IgG (to tTg) means your blood immune system is reacting to gluten. That says, regardless of whether you have intestinal celiac disease, you have gluten intolerance. You are creating tTg which tags tissue in your body for destruction by IgG antibodies because your blood's immune system believes an antigen has compromised it. In this case, the antigen is gluten, not a germ. And it's quite possible that's happening because gluten is compromising tissue in your body. Examples would include gluten plugging into nerve cells.

This means you have undigested, or partially digested, gluten in your bloodstream. Your small intestine is reacting to gluten ingestion by releasing zonulin, and making your intestinal lining permeable.

You can wait until the blood gluten and IgG destroy something you need and then follow your doctor's advice, or you can follow your doctor's advice now.

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[Mother of Jibril]

You can wait until the blood gluten and IgG destroy something you need and then follow your doctor's advice, or you can follow your doctor's advice now.

I don't know how much you know about autoimmune disorders...

The normal function of the immune system is to create antibodies in reponse to foreign objects (like viruses and bacteria). This is extremely important. However... in autoimmune disorders, your body goes overboard and starts attacking healthy tissue. When the villi in your intestines are damaged, that's called celiac disease. Some people think this is the root cause of most autoimmune disorders, because it allows undigested particles of food to leak out into your bloodstream. That really makes your immune system go crazy! You can produce antibodies to all kinds of important organs... the thyroid (Graves' disease, Hashimoto's), stomach (pernicious anemia), liver (AIH), adrenal glands (Addison's disease), pancreas (type I diabetes), brain (MS), etc...

Your doctor actually gave you great advice. You may or may not have celiac disease (EMA and Ttg are more specific for celiac than anti-gliaden), but your body is definitely reacting to wheat. If you don't have any major health problems yet, then you've really been blessed to discover this early! Going on a wheat-free (even better, a gluten-free) diet will be the best thing for your health.

[rinne]

Regarding the biopsies you have had, for Celiac disease they use the Marsh Scale which shows four stages of destruction of the villi, I have read that the evidence of the destruction is visible at the third stage, by the fourth stage the villi may never heal.

Your doctor has given you good advice.

I spent years knowing that wheat was a problem for me and generally avoided it but I did not understand what gluten was and how much damage it was doing to me. It is worth investigating.

And welcome.

[loxleynew]

Thanks for the advice! I was kindve unsure of the difference between being celiac and just gluten intolerent. From what I can tell gluten intolerence eventually leads to celiac disease AND other disorders. With celiac disease being 100% if you let it develop and other auto immune disorders to follow spriadicaly. Is this kind of correct?

This also makes sense as my thyroid is in the process of failing I guess. I was tested and it came back as TSH of 5.0 then 6.9 later. Also had antibodies floating around attacking my thyroid. Hopefully this can be reversed if I avoid gluten.

So basically I'm in the stages of right before celiac disease? Sorry i'm a little bit confused.

Thanks for the help and advice!

-Aaron

[veggienft]

Thanks for the advice! I was kindve unsure of the difference between being celiac and just gluten intolerent. From what I can tell gluten intolerence eventually leads to celiac disease AND other disorders. With celiac disease being 100% if you let it develop and other auto immune disorders to follow spriadicaly. Is this kind of correct?

This also makes sense as my thyroid is in the process of failing I guess. I was tested and it came back as TSH of 5.0 then 6.9 later. Also had antibodies floating around attacking my thyroid. Hopefully this can be reversed if I avoid gluten.

So basically I'm in the stages of right before celiac disease? Sorry i'm a little bit confused.

Thanks for the help and advice!

-Aaron

You are correct in deducing that your gluten intolerance is a bad thing. The specific results of gluten intolerance don't currently include celiac disease. Gluten intolerance autoimmune diseases include thyroid disease. So your thyroid disease is consistent with a gluten-intolerance cause.

Thyroid destruction and thyroid malfunction cause other autoimmune disorders, including heart disease. The established connection between gluten ingestion and thyroid disease, combined with your IgG gluten antibodies, should be sufficient reason to stop eating gluten.

Research I'd like to see:

* Improved methods of detecting direct gliadin attack, so that doctors are not forced to rely on detecting gliadin antibodies. It doesn't correlate that, when gliadin attacks tissue from the blood, the immune system will respond. I think most people's immune systems do not respond when gliadin attacks. You are fortunate that yours did, in that your doctor was able to detect it and offer you an effective treatment ........a gluten-free diet.

* Research into cross-system gliadin back-effect. Research has identified the digestive immune response which is celiac disease and the blood immune response which is gluten intolerance. Doctors apply treatment based on the two syndromes interacting in only one direction, from digestion to blooodstream. That is not necessarily correct.

For example, doctors assume that digestive gluten is the only cause of intestingal celiac disease .......Gluten contacts the intestinal lining and causes the immune system to attack it. But the intestinal lining is fed by blood, just like all other tissue in the body. Who's to say whether or not your conclusion is correct? ........that you have celiac disease, but no blood-born digestive gluten antibodies, because your intestinal lining is being attacked from your bloodstream, and not from your digestive system.

Another example would be nerve attack. Researchers and doctors assume that blood immune reactions like yours happen because gliadin opioids attack nerves from the bloodstream. But the small intestine also has nerves. And those nerves are open to attack from digestive gliadin. Who's to say that, in some cases, the blood's response to gluten is not a response to digestive gluten attacking digestive nerves?

My thyroid tends to malfunction. It over-produces enzyme. On a gluten-free diet, those symptoms went away. I assume my thyroid problems are now in remission.

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[Mother of Jibril]

This also makes sense as my thyroid is in the process of failing I guess. I was tested and it came back as TSH of 5.0 then 6.9 later. Also had antibodies floating around attacking my thyroid. Hopefully this can be reversed if I avoid gluten.

This is a very new area of research. Here's an article that came out just last month:

https://www.celiac.com/articles/21713/1/Tis...ents/Page1.html

I would be cautious about saying that thyroid disorders "cause" heart disease or can be "cured" by a gluten-free diet. Hyperthyroidism CAN cause abnormal heart rhythms. Hypothyroidism CAN cause high cholesterol... but a lot of people have no complications at all. Thyroid disorders can get better on a gluten-free diet (especially hyperthyroidism... which can also resolve on its own, resolve with radioactive iodine treatment, or turn into hypothyroidism), but if your thyroid is too damaged then you might not be able to recover... even on a gluten-free diet.

[veggienft]

This is a very new area of research. Here's an article that came out just last month:

https://www.celiac.com/articles/21713/1/Tis...ents/Page1.html

I would be cautious about saying that thyroid disorders "cause" heart disease or can be "cured" by a gluten-free diet. Hyperthyroidism CAN cause abnormal heart rhythms. Hypothyroidism CAN cause high cholesterol... but a lot of people have no complications at all. Thyroid disorders can get better on a gluten-free diet (especially hyperthyroidism... which can also resolve on its own, resolve with radioactive iodine treatment, or turn into hypothyroidism), but if your thyroid is too damaged then you might not be able to recover... even on a gluten-free diet.

Your statement means hyperthyroidism DOES cause heart disease. And it does. It may not cause heart disease in any particular patient, but I did not say it did. And yes, thyroid disease symptoms "can" be placed into remission by a gluten-free diet ........obviously in cases where gluten ingestion caused the thyroid disease.

Open Original Shared Link

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According to research reported on in the medical journal Digestive Diseases and Sciences, a significant number of patients with autoimmune thyroid disease also have celiac disease. Celiac disease is a disorder that causes the intestines to react abnormally to gluten, a protein found in wheat, rye, barley, oats, spelt, kamut, and other related grains.

"...researchers found that...organ-specific autoantibodies (i.e., thyroid antibodies) -- will disappear after 3 to 6 months of a gluten-free diet."

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There are three levels of gluten disease. They are nested, one inside the other. Gluten sensitivity includes all diseases caused by ingesting gluten. Gluten intolerance includes all autoimmune responses to gluten. Celiac disease is the digestive autoimmune response to gluten which attacks the intestinal lining.

Proving gluten-caused autoimmune disease is not possible using blood-born antibodies. It's merely solid evidence. But proving celiac disease through intestinal biopsy is possible. So the only method which is capable of proving a link between gluten ingestion and autoimmune thyroid disease did in fact prove that link.

Obviously the thyroid gland is not part of the small intestine, so the link can be assumed to be a blood-born attack by gluten, by other antigens which digestive gluten places into the bloodstream, or by an autoimmune response to one or more of these antigens. And since celiac disease is a subset of gluten sensitivity, one may correctly assume that some greater correlation exists between autoimmune thyroid disease and gluten sensitivity.

And that assumption is born out by the remission of thyroid symptoms on a gluten-free diet.

You placed "cure" in quotes, but it is not a word I used. Perhaps you would benefit by a chill session.

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[Mother of Jibril]

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"...researchers found that...organ-specific autoantibodies (i.e., thyroid antibodies) -- will disappear after 3 to 6 months of a gluten-free diet."

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And that assumption is born out by the remission of thyroid symptoms on a gluten-free diet.

Even if you can get your immune system to stop producing thyroid antibodies (which I agree is possible) that might not mean your problem is solved. A good analogy is this... in autoimmune disorders like PBC and AIH your liver can get so damaged that you need a transplant. If you're on the transplant list, I don't think a gluten-free diet is going to solve your problem It might ensure that you don't reject your new liver, but sometimes the damage is just too extensive to heal. Some people also have refractory sprue... celiac damage that is so bad your intestines are unable to heal and you have to go on TPN to survive.

Loxleynew... this forum is really a great place for information, but you do have to be careful. I'm not a medical doctor. I don't think veggienft is either. Your thyroid symptoms might resolve on a gluten-free diet (that would be great!), but mine haven't. While you're waiting for your thyroid antibodies to go away, you might just want to get on some thyroid hormones (if you're not already). The thyroid regulates some very important things like hormones, metabolism, reproduction, etc... The AACE recommendation for TSH levels is 0.3 to 3.0.

[loxleynew]

Even if you can get your immune system to stop producing thyroid antibodies (which I agree is possible) that might not mean your problem is solved. A good analogy is this... in autoimmune disorders like PBC and AIH your liver can get so damaged that you need a transplant. If you're on the transplant list, I don't think a gluten-free diet is going to solve your problem It might ensure that you don't reject your new liver, but sometimes the damage is just too extensive to heal. Some people also have refractory sprue... celiac damage that is so bad your intestines are unable to heal and you have to go on TPN to survive.

Loxleynew... this forum is really a great place for information, but you do have to be careful. I'm not a medical doctor. I don't think veggienft is either. Your thyroid symptoms might resolve on a gluten-free diet (that would be great!), but mine haven't. While you're waiting for your thyroid antibodies to go away, you might just want to get on some thyroid hormones (if you're not already). The thyroid regulates some very important things like hormones, metabolism, reproduction, etc... The AACE recommendation for TSH levels is 0.3 to 3.0.

Oh definatley. I will talk to my doctor about starting on some thyroid hormones in a week or two after Ive settled into my detox diet. I just started the gluten free diet and started taking quite a few supplements. I would rather wait a week or two before starting thyroid hormones.

[veggienft]

Oh definatley. I will talk to my doctor about starting on some thyroid hormones in a week or two after Ive settled into my detox diet. I just started the gluten free diet and started taking quite a few supplements. I would rather wait a week or two before starting thyroid hormones.

Do your gluten-free diet a favor. Closely read the active and non-active ingredients of your "supplements". Many contain gluten, sometimes disguised as something like "modified starch". The idea is to know all the ingredients, and know they don't contain gluten, before ingesting them. If you aren't sure, then don't take them.

Because gluten intolerance is an immune reaction, it is triggered by the ingestion of gluten .......any gluten. Success of a gluten-free diet depends on the elimination of any and all gluten. Most people, me included, go through a learning process, being glutened by ingesting things we didn't think even could contain gluten.

Examine everything before putting it into your mouth.

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