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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

Can A Person Have A Positive Ttg Blood Test For No Reason?
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I have some questions on testing that I'm hoping someone can answer for me...Can a person have a positive TTG blood test for no reason?  If a person has a positive TTG, and 1st degree relatives that have celiac disease, but has a negative biopsy and no apparent physical symptoms, is it really safe for him to remain on a gluten diet? Are just the elevated TTG antibodies a concern, even if no damage can be found? If the person did a gluten free trial, and his TTG returned to normal levels, would this indicate that he did indeed have celiac disease and should continue to avoid gluten?  Thanks for any insight you can provide!

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Doctors would call that "biological variation". I don't think the test will be positive for absolutely no reason however it is elevated in MANY different disorders and infections. Studies have shown transient elevation during an infectious illness and it is notorious for being false positive in those with other autoimmune diseases (20 percent false positive rate in type 1 diabetes). The problem with starting a gluten free diet off the result right away is that you won't know if it was just a variation or if it was in fact early Celiac when it goes down. At this point, it is a patient by patient basis and it is important to take into other factors to make a decision for that specific person.

What may appear as "no reason" may be something that slipped the patients mind, perhaps an infection from a month or two ago, it could be a viral illness that wasn't too noticeable to the patient etc... Thyroid peroxidase for example can actually see slight elevations during the common cold. The titre of the antibody is big too for determining the cause, if it is 10x the positive limit then it is doubtful for other issues to raise it.

The Chicago Celiac center says that family members of Celiac patients can have an elevated TTG for no reason, in that case keeping an eye on symptoms or any other clues leading to possible Celiac along with periodic blood tests (could be with your yearly physical) would be an ideal way to handle it.

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I found out I have celiac a year ago, and because of genetics we had both kids tested. The GI ran TTG only as a screening, my youngest came back normal but my 8 yo had elevated TTG at about 80- strong positive. He advised a biopsy, which took me some time to decide on because I had sort of made up my mind that if either were positive on labs, we'd just make them gluten free, since I have celiac. But when that shock came to be, we ended up doing the biopsy. Totally normal, healthy biopsy, with plenty of samples taken with a good pediatric GI at the chidren's hospital. This guy told me NO celiac, to feed her normally and retest in 6 months. But we just felt so uncomfortable with this, we got another opinion and our current pediatric GI ran some extra tests- she ended up coming back very low on vitamin D and also EMA positive- so, that gave us our reassurance that she does in fact have celiac. Being as thorough as possible, he also had the biopsy samples re-ran through their hospital, and there was nothing missed. He drew me a picture on a piece of paper and showed the intestines, and an exampke of 6 samples taken, how much space was still there to have damage- so he assured me the damage was in there, likely missed or patchy.

Been 6 months gluten free, her TTG normal, now EMA negative, and vitamin D nearly tripled.

If a family member of someone has high TTG but normal biopsy I would be sure other things are tested to get better answers, but no, I would not chalk it up to something else given the celiac genetics.

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Thanks for your replys.  His EMA was negative, and his Iron level was fine, but I don't think they checked his Vitamin D. For now he's decided to go on a gluten free diet to see if his TTG go down to normal levels.  He wants to avoid follow up endoscopies (GI said he would need to do them periodically to check for damage, probably every few years) and symptoms that his family members have, including any increased risk for other autoimmune disorders. If his TTG goes down we were thinking that would indicate celiac really was the problem, even without fining anything on the endoscopy.  I haven't ever heard  about an infection causing high TTGs as toworry mentions.  If thats true I'd like to read some more information on that. I had understood that the high specificity of the TTG would make celiac very likely for him.I know that the specificity depends somewhat on the level too - his TTG was 51 with less than 20 being negative, which our GI said was a moderately high positive on the test. If his level goes down to normal while he is off gluten, and he then does a gluten trial and it rises again, would that indicate the problem was indeed celiac disease?  I guess my question is, if it appears that his TTG levels do rise and fall in reaction to a gluten free diet, would it really be fine to stay on gluten even if they found nothing on the endoscopy?  It seems to me just the high TTG is a risk, but maybe I'm not understanding what the TTG really represents. 

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TTG is not that specific for celiac - that is why they like to do the EMA if tTG comes up positive.  Here is what Wiki says:

 

Antibodies to tissue transglutaminase (ATA or anti-tTG) are found in patients with several conditions, including coeliac disease, juvenile diabetes,[1]inflammatory bowel disease,[2] and various forms of arthritis

 

Or, as stated above, they can elevated by other transitory conditions in the body. 

 

If the tTG is responsive to gluten, i.e., positive when on gluten, negative when off, I would think that would be a pretty positive indicator for celiac as the culprit.  As Mom-of-Two says, the biopsy is not infallible.

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Type 1 diabetes associated and tissue transglutaminase autoantibodies in patients without type 1 diabetes and coeliac disease with confirmed viral infections. http://www.ncbi.nlm.nih.gov/pubmed/22585721

Helicobacter pylori infection is associated to increased levels of tissue transglutaminase in gastric mucosa cells
http://www.gastrojournal.org/article/S0016-5085(01)83332-1/abstract

Anti-transglutaminase antibodies in non-coeliac children suffering from infectious diseases http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810390/


It is well known that autoantibodies can be elevated during infection (remember, that does not mean it always is). There are many other studies showing elevated autoantibodies "specific" for other diseases too if you do some google searches and look through NCBI. 

The problem with the TTG is that it is still relatively new when thinking about how long it has been on the market to be evaluated during other illnesses and diseases. Just like any other product created, the TTG is manufactured by a private research laboratory and is sold to testing labs and doctors in the same way a salesman would sell a car. They will market it in it's best possible light to get the sales while obeying relevant laws and requirements. The issue is that over time many of these tests are found not to be as accurate as they were once marketed. 
 

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