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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

Need Help Interpreting Blood Test Results
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Some of you may remember me posting about my 2 yr old dd Zoe..

Her test results were:

IGA-68 (normal is less than 30)

IGG-67 (normal i sless than 30)

There were three other tests my dr did and they were all negative, and he told them to me over the phone and I may be spelling the wrong.

Anti extractable nuclear antigen RNP antibiodies-- negative 5

Smith Antibodies ---7 negative

anti mitochondrial anti AMA -- negative less than 1-20

Please help me interpret! I think this is a positive for Celiac, but my pediatrician just doesn't know, and her GI appt is not until July.

Mel

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ARGH! Anybody?

I am looking on the internet and those last 3 tests don't look like they're specifically for celiac at all. I am pullling up other auto-immune disorders. I am very confused as to why my dr ordered these other tests. :( I don't know what to do. What do I make of the positive IgA and IgG?

Thanks again,

Mel

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I posted this in children's forum but nobody has responded. basically my 2 yr old dd has had loose frequent bowels since january. my dr did some tests, and anti-gliadin IgA was 68 (above 30 is abnormal) and IgG was 67 (above 30 is abnormal). The other tests my pediatrician did were anti extractable nuclear antigen RNP, which was negative, anti-smith anitbodies, negative, and anti-mitochondrial anti-AMA which was negative. My friend is a pathologist and doesn't understand why these tests were done (besides the anti-gliadin).. they are usually for other autoimmune diseases. Anyway, my ped won't give me answers.. said "try" the diet and see what happens. I am not sure this is a good idea to do until I am sure that Celiac is the only reason these anti-gliadin levels are high. Please help?

Mel

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Hi Mel,

I think no one responded, because none of us have heard of those tests before. They are not related to celiac disease at all, but maybe your doctor is checking for other things at the same time. Her antibodies to gluten are both positive, so they want you to put her on the diet. The only reason you shouldn't would be if you want them to do the biopsy of her intestines. Going gluten-free first could mess up the results. If you want the biopsy, push for it now. Otherwise she may get better on the diet and then you have to make her sick again giving her gluten for the biopsy (for weeks) and then her biopsy might be negative anyhow. It is your choice. I opted for no biopsy on my children. They are gluten free and although they don't have the official daignosis, their doctor noted their relief of symptoms on the diet and is monitoring their progress. I hope you get some answers soon about these other tests.

It is not uncommon for people who have Celiac (an autoimmune disease) to also have other autoimmune diseases.

God bless,

Mariann

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I think I can help a little here -- the ANA-RP test is sometimes done for juvenile rheumatoid arthritis, and the anti-mitochondrial AMA is often done to differentiate between types of IBS (Crohn's or irritable bowel). It looks like your doctor was trying to get a wide net cast from the one blood draw (good for him/her). Certainly her IgG and IgA values are 'way above normal. I agree with Mariann, get her gluten-free and see if it helps. If she is celiac, it will make a huge difference and help clear up any confusion about any other issues. Personally, if there is still doubt in you or your doctor's mind, I would have a tTg done before doing a biopsy.

Joanna

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Sorry, I also wanted to tell you that you should ALWAYS have your doctor give/send you a hard copy of test results! ALWAYS! Keep them in a notebook, and if you have to be The Difficult Mother, this is the time to do it! (Sometimes it works best to ask the nurses, "could I just have a copy of that for myself?")

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Guest gillian502

The IgA and Igg are both positive indicating Celiac. I would push for her to have a biopsy done right away, do not wait until July, it's absurd for the doctor to ask you to wait so long. Right after the biopsy you can start her on a gluten-free diet before you even hear what the results are...it can't hurt and the sooner the better. Don't go gluten-free until after the biopsy-the results will not be accurate.

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Thanks for the replies,

I decided to go ahead and go forward with the gluten-free diet for our family. I have decided that I do not want to do the biopsy. I am a little nervous about the changes, but at the same time relieved that I have some answers to her problems!

I went to the store last night, that has a large health food section. I can't believe how expensive things like gluten-free cereals there are. We are also going dairy-free for a while. I ordered a few cookbooks, and I"m going to look into a local co-op so maybe I can buy some things in bulk and save money.

Thanks!

Mel

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Remember, plain old food is okay -- you can still have strawberries, bananas, etc. plain chicken, etc. Be open to experimenting first to find what kinds of gluten-free foods you like (we are living on Ms. Roben's pizza crust), so you might choose to buy a few things, try them, and not buy too much in bulk. I went to a gluten-free cooking class and the instructor (a restaurant chef with celiac) said she had priced out baking from scratch vs. buying a mix, and they are almost identical costs. It will all be okay! You will stop feeling like your head is spinning!

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There are some good gluten-free and dairy free recipes at www.pecanbread.com and they try to be kid friendly recipes. Try to just stick to plain foods. I got the gluten-free cereal and some cookies to start. I also got a bag of the gluten-free pancake mix. Beyond that I just stuck with plain old home cooked foods. Used corn startch to make gravies, and just watched the ingredient list on this site for anything prepackaged.

On the biopsy. I would call your docs office and have them fax the test results to the GI give it a day and call the GI office and make sure they got them, and make sure that doc looks at them. Give them about 6 hours, then call back and see what the doc had to say about those results, and also have them run the question by that doc whether or not they would diagnose celiac with these results+dietary changes and symptom relief.

It is difficult to say how much cooperation you will have in the future from other docs, schools day cares etc if you do not have an official diagnosis from the doctor.

The biopsy itself is not that bad, we went through one in January for my son (2) its truely harder on us than them, and if you are going to a good children's hospital for this it really shouldn't be that hard on you either.

another bit of advice. Keep a food journal.. keep track of the ins and outs so to speak that will also be a valuable tool for the doctor to use.

hope this helps.

Denise

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