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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Blood Results - Need Help Interpreting
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Hi

I got my blood results back yesterday and wondering what it all means. The Naturopath says that I am screen positive for celiac and now should return to see my MD if I want to have a biopsy done. Just wondering what the likelyhood is that I actually have celiac with these results:

Deamidated gliadin IgG 10.8 U/mL

Deamidated gliadin IgA >100 U/mL

Transglutaminase IgA AB 1.3 U/mL

Thanks for your help.

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Hi Jules, and welcome.

Normally it is hard to judge raw scores without the reference ranges that the lab uses. And were these the only tests run? Nevertheless, the Deamidated Gliadin IgA at over 100 is a very high count and that test is considered very specific for celiac disease, so yes, I would say you most likely are celiac. All you need is one very positive score; that is why they usually run the whole panel.. It is a bit tricky with your tTG (tissue transglutaminase) being so low; this is the test that normally attempts to measure the degree of damage in the small intestine, which has traditionally been the definition of celiac disease. We now know, of course, that it affects other parts/organs of the body, including the skin and the nervous system. Were you tested because of digestive issues?

The testing for celiac is confusing because doctors will often tell you that if you don't have intestinal damage on the biopsy that you do not have celiac, and some will even tell you to eat gluten to your heart's content (if not your gut's) :) However, in the past year researchers and the more knowledgeable doctors recognize that there is also a condition called non-celiac gluten intolerance (NCGI) where you can test negative on all tests and still have a problem with gluten.

With your high score on the DGP, it is likely that your doctor will advise you not to eat gluten regardless of the result of the endoscopy with biopsy. I certainly would advise it.

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Thank you so much for your reply!

The reference range for the tests are all <10 U/mL

I had the test because my naturopath recommended that I stop eating gluten (and processed sugar) to help clear up the candida overgrowth that I have as result of taking so many antibiotics over the past ten years to fight recurring UTI's. She suggested I take the test before I stop eating gluten. I have very few digestion issues - mostly just constipation and bloating.

I have been gluten free for almost 3 weeks (took the blood just prior to stopping) and my stomach bloating is much much improved. I am now wondering if this ie Celiac is the reason why my body will not fight the bacteria that causes my UTI's

So still not sure if I should do the biopsy - do you think at high DPG IgA could be caused by anything else?

Thanks again

Hi Jules, and welcome.

Normally it is hard to judge raw scores without the reference ranges that the lab uses. And were these the only tests run? Nevertheless, the Deamidated Gliadin IgA at over 100 is a very high count and that test is considered very specific for celiac disease, so yes, I would say you most likely are celiac. All you need is one very positive score; that is why they usually run the whole panel.. It is a bit tricky with your tTG (tissue transglutaminase) being so low; this is the test that normally attempts to measure the degree of damage in the small intestine, which has traditionally been the definition of celiac disease. We now know, of course, that it affects other parts/organs of the body, including the skin and the nervous system. Were you tested because of digestive issues?

The testing for celiac is confusing because doctors will often tell you that if you don't have intestinal damage on the biopsy that you do not have celiac, and some will even tell you to eat gluten to your heart's content (if not your gut's) :) However, in the past year researchers and the more knowledgeable doctors recognize that there is also a condition called non-celiac gluten intolerance (NCGI) where you can test negative on all tests and still have a problem with gluten.

With your high score on the DGP, it is likely that your doctor will advise you not to eat gluten regardless of the result of the endoscopy with biopsy. I certainly would advise it.

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Although there have not been a lot of research results proving the link, the anecdotal evidence on the board is pretty strong that gluten intolerance and UTI's ride together. I am a prime case. I now have methicyllin resistant infection and all I can do is keep it at bay, never cure it. My family all had either diagnosed celiac or suspicious symptoms and all had the UTI problem too.

Your DGP is pretty much off the charts and is 99% specific for celiac, and with your bloating symptoms improving with removal of gluten I think it is pretty likely you are gluten intolerant or celiac. The damage to your intestine if you are celiac is not necessarily related to the severity of your symptoms. Some people are silent celiacs.

If you have been gluten free, you would need to go back on gluten for 6-8 weeks for the biopsy to be accurate. You may not be comfortable doing this, because the normal pattern is that after being rid of gluten for a while the body puts up a much bigger fight when it is reintroduced and you suffer a lot more :( And after three weeks sufficient healing may have taken place that your biopsies will not fall within the positive range.

You can give the gluten free diet a good 3-6 month trial and see if your symptoms resolve. If not, you can then explore other reasons for them.

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There is, in my experience, a cause and effect relationship between eating gluten and recurrent UTI's. In my case, I kept having calcium crystals and protein showing up in the urine, and was constantly fighting these infections while on a "normal" diet. This has resolved on a gluten free diet. The bone loses minerals to replace missing blood calcium, and the kidneys must regulate your calcium blood levels, and that is how you can end up with calcium in the wrong place (and kidney stones). Being better nourished as a result of healing allows the minerals (and vitamins) to be absorbed, and helps prevent bone loss.

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so are you saying that you still suffer from UTI's?

Although there have not been a lot of research results proving the link, the anecdotal evidence on the board is pretty strong that gluten intolerance and UTI's ride together. I am a prime case. I now have methicyllin resistant infection and all I can do is keep it at bay, never cure it. My family all had either diagnosed celiac or suspicious symptoms and all had the UTI problem too.

Your DGP is pretty much off the charts and is 99% specific for celiac, and with your bloating symptoms improving with removal of gluten I think it is pretty likely you are gluten intolerant or celiac. The damage to your intestine if you are celiac is not necessarily related to the severity of your symptoms. Some people are silent celiacs.

If you have been gluten free, you would need to go back on gluten for 6-8 weeks for the biopsy to be accurate. You may not be comfortable doing this, because the normal pattern is that after being rid of gluten for a while the body puts up a much bigger fight when it is reintroduced and you suffer a lot more :( And after three weeks sufficient healing may have taken place that your biopsies will not fall within the positive range.

You can give the gluten free diet a good 3-6 month trial and see if your symptoms resolve. If not, you can then explore other reasons for them.

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so are you saying that you still suffer from UTI's?

Yes, I am afraid I do, since they became antibiotic resistant in my body. :( I use cranberry tablets mostly.

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that is very interesting - because when the naturopath was reviewing my results she also talked about a result that would suggest that my kidneys are a little sluggish which puts me at greater risk for kidney stones.

wow - its all related - its amazing actually.

There is, in my experience, a cause and effect relationship between eating gluten and recurrent UTI's. In my case, I kept having calcium crystals and protein showing up in the urine, and was constantly fighting these infections while on a "normal" diet. This has resolved on a gluten free diet. The bone loses minerals to replace missing blood calcium, and the kidneys must regulate your calcium blood levels, and that is how you can end up with calcium in the wrong place (and kidney stones). Being better nourished as a result of healing allows the minerals (and vitamins) to be absorbed, and helps prevent bone loss.

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what is the difference between gluten intolerance and celiac?

Although there have not been a lot of research results proving the link, the anecdotal evidence on the board is pretty strong that gluten intolerance and UTI's ride together. I am a prime case. I now have methicyllin resistant infection and all I can do is keep it at bay, never cure it. My family all had either diagnosed celiac or suspicious symptoms and all had the UTI problem too.

Your DGP is pretty much off the charts and is 99% specific for celiac, and with your bloating symptoms improving with removal of gluten I think it is pretty likely you are gluten intolerant or celiac. The damage to your intestine if you are celiac is not necessarily related to the severity of your symptoms. Some people are silent celiacs.

If you have been gluten free, you would need to go back on gluten for 6-8 weeks for the biopsy to be accurate. You may not be comfortable doing this, because the normal pattern is that after being rid of gluten for a while the body puts up a much bigger fight when it is reintroduced and you suffer a lot more :( And after three weeks sufficient healing may have taken place that your biopsies will not fall within the positive range.

You can give the gluten free diet a good 3-6 month trial and see if your symptoms resolve. If not, you can then explore other reasons for them.

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There are many people, a greater number than those who have celiac disease, who test negative on all tests for celiac, but who have the same gluten symptoms. They do not show the intestinal damage that celiacs have. Researchers are only just designing studies to test these people and doctors are only just starting to recognize the diagnosis of non-celiac gluten intolerance.

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Hi Mushroom :)

I want to thank you again for answering my questions - navigating this is very confusing and unfortunately many MDs are not well versed in this.

I was emailing an acquantance of mine who I know has Celiac to ask her some questions re dx of celiac and she said that she sent a stool sample to Enterolab: https://www.enterolab.com/default.aspx

She said the following: Dr. Barbara feels that the stool test administered by Interolab of Dallas, TX is the definite test, as stool is the end product made by the body. I goggled 'Interolab,' input my credit card number, and was sent the equipment to send a stool sample to Dallas. Interolab sent the results to me by e-mail. Including overnight courier, the test may have cost me $800+. My son had both the stool test and the gene swab done. Dr. Powell feels confident that no further tests are required, and we have moved forward from there.

Wondering what your thoughts are on this method of testing?

Thanks

Jules

There are many people, a greater number than those who have celiac disease, who test negative on all tests for celiac, but who have the same gluten symptoms. They do not show the intestinal damage that celiacs have. Researchers are only just designing studies to test these people and doctors are only just starting to recognize the diagnosis of non-celiac gluten intolerance.

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