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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
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Antibodies?
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My daughter has tested positive for the antibodies for Celiac. Does she really need the biopsy to prove it or should we go gluten-free since she has the antibodies?

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Thats up to you. If you feel the blood test was enough for the diagnosis, then stop there.

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My daughter has tested positive for the antibodies for Celiac. Does she really need the biopsy to prove it or should we go gluten-free since she has the antibodies?

I'm not a medical person, but my G.I. doc said that, aside for it being confirmation of celiac disease, that they are also looking for certain markers and baselines, plus examining for esophageal damage that may have resulted from GERD (many celiacs also suffer from this), etc. You should ask the GI doc to elaborate.

It (the biopsy) may also be an important piece of medical evidence to have for your daughter's school, or for research studies/treatments, etc. I've seen a few trials that would only take celiacs who had been confirmed by small intestine biopsy.

Whether or not you decide on the endoscopy, your daughter's blood tests shows she has celiac disease (I don't believe there are false positives - you can search this forum and internet - blood test is quite definitive) so I think your medical provider will tell you that you should definitely begin the gluten free diet. The sooner you do, the sooner the damage stops and she begins to heal.

Plus, this is a genetic disease. She got the gene from one side of the family or the other. You may inquire about testing additional family members (including parents).

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Here is a link to the University of Chicago Celiac Center, it has tons of information (treatment, factsheets, video, etc):

http://www.celiacdisease.net/testing

They state on their site that endoscopy biopsy is necessary to confirm the diagnosis.

other sites with info on this:

http://www.celiaccenter.org/celiac/faq.asp

http://pediatrics.aappublications.org/content/115/5/1341.full.pdf+html

http://thesavvyceliac.com/2011/04/21/research-diagnosing-children-with-celiac-disease/

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What I didn't mention is that we had the endoscopy done in December and it showed minimal inflammation of the lining of the small intestine but no damage to the villi, so the doctor says it's "Latent Celiac" which means we caught it before it did any damage. She has been gluten-free for 4 months now but still has some stomach aches, which doctor says are from Irritable Bowel Syndrome. The doctor says we can try gluten for 4 months and then do another endoscopy to see if there is any damage. My question is why would we put her back on gluten if she has the antibodies, which tells me that her body is fighting the gluten and will eventually cause damage. What would be the point of putting her back on gluten and doing another endoscopy if we know that, eventually, she'll have damage -- we just don't know when the damage will occur?

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Well, I personally think that is pretty dumb. Much more interesting would be to do another one now and see how it looks today after 4 months gluten free.

Her lingering stomach aches may be related to some other food that she does not tolerate well. For example, did you take her off lactose too? Because we often cannot handle lactose well until we fully heal. Or it could be something else that she reacts badly to. You could try a food and symptom diary and see if you can make any correlations. But I do think it would be cruel to subject her to further damage (not to mention pain) just to satisfy the doctor's curiosity.

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Well, I personally think that is pretty dumb. Much more interesting would be to do another one now and see how it looks today after 4 months gluten free.

Her lingering stomach aches may be related to some other food that she does not tolerate well. For example, did you take her off lactose too? Because we often cannot handle lactose well until we fully heal. Or it could be something else that she reacts badly to. You could try a food and symptom diary and see if you can make any correlations. But I do think it would be cruel to subject her to further damage (not to mention pain) just to satisfy the doctor's curiosity.

The doctor took another celiac panel 2 months after being gluten-free and he said her levels were "slightly high" but lower than the first time. They took another panel yesterday and we'll see what it shows. I wonder if there's any chance that the celiac panel was originally a false positive???

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No, if repeated celiac panels when she is gluten free show that the antibodies are going down - well, that's what they are supposed to do. In the absence of gluten the antibodies are not needed and will gradually go away. Now if they had been going up, that would be a different story. It sounds to me that the diagnosis was correct and her progression is normal (improving) except for the tummy aches which may well be caused by some other food intolerance.

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No, if repeated celiac panels when she is gluten free show that the antibodies are going down - well, that's what they are supposed to do. In the absence of gluten the antibodies are not needed and will gradually go away. Now if they had been going up, that would be a different story. It sounds to me that the diagnosis was correct and her progression is normal (improving) except for the tummy aches which may well be caused by some other food intolerance.

Thank you for your input. I asked the doctor if my daughter is lactose intolerant and he said, based on the biopsy, that she is not deficient or intolerant of anything. I'm wondering if I should take her off lactose on my own and see what happens. That would be milk, cheese, yogurt....anything else?

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If it were lactose, you may only need to remove milk, cream, ice cream, soft cheese. Enzymes and cultures 'digest' most ot the lactose in yogurt, cheese, etc., and the lactose is all squeezed out of butter pretty much. But it could be something other than lactose. Many of us whose guts are clean as a whistle have other food intolerances. I don't see how he could 'see' them :o Of course, I am no M.D., just a skeptic.

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