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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Son Saw Gi Doctor Yesterday
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parkerrmmc    0

Hello! I joined this message board a few weeks ago and I first want to start by saying THANKS to all of you. Everyone has been so helpful therefore reducing my stress greatly. Now to my son, his pediatrician sent us to a Pediatric GI doctor to check for Celiac, due to an increased AGA IgG level. When we went yesterday, she immediately put him back on a regular diet (he's been gluten-free for over two months) for 2-3 months. She did order all 5 blood tests yesterday even though he's been gluten-free for awhile. She is also having us collect stool so that she can check the fat content. At the end of the 2-3 months, she wants to repeat the 5 blood tests and if they show positive for Celiac, she wants to order DNA testing. I was shocked when she said this beacuse in all the posts I've read, most doctors won't order this. Am I correct? She never mentioned anything about scope or biopsy, just the blood tests and the DNA testing. What are your thoughts on all of this? Any information will be greatly appreciated.

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plantime    12

It sounds like she is starting with the least invasive tests first. If she comes up with positive results from the bloodwork and stool sample, she might not order an endoscopy. Although she might order it later to determine the extent of damage, but that will depend on what she finds in the other tests. It is my ~humble~ :D *opinion* that she is starting off very well! Perhaps you have found a good GI doc for your son!

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KaitiUSA    7

I am not sure if some doctors opt not to do that for celiac but it sounds like you found a good doctor who is being very thorough. My GI doctor ordered the 5 tests plus the gene test and at that point I had no clue what I needed to be tested for. Keep us posted :D

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Hi - I have a post out there, I'm new. I just read yours and wondered what are the 5 tests, and what gene test is being discussed?

My son, now 2 1/2, has not gained weight in over a year. The doctors don't seem to know what to do other than suggest a feeding tube but that terrifies me.

He was fine on baby food and Alimentum. The trouble all began with table food. He has foul-smelling stool, often has gas, and burps all the time.

My post has information about me (still up in the air) and since you mentioned a gene test, at this point, I'd do just about anything to find out what's ailing us both.

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Guest ajlauer   
Guest ajlauer

trying4faith:

The thought of a feeding tube makes me want to vomit! FIND A NEW DOCTOR!! BLECH!!!!!!!!!!! My daughter, almost 4, just finally hit the 29-pound marker! I was thrilled, needless to say. She has been at 28 pounds for at least the last 6 months. In fact, she can now share some shirts with her 1-yr old sister! I suspected food allergies earlier this year. They tested her - and she's allergic to 7 different things. I brought her in for a follow up the other day, and they drew more blood. They are checking for celiac disease, cystic fibrosis, and "some other things" that can cause failure to thrive in a young child. What I *totally* appreciated - is that they're doing all these tests at once. So she only needs to be poked one time. They're also doing the stool test for fat that was mentioned in the original poster's message.

To answer your question on the 5 tests: I don't know them offhand. In the topic about testing and diagnosis.... I recently asked the question "Exactly what tests do I need". There is a terrific answer there - shows the long name (and abbreviated name) of all the 5 tests. You know... when it comes to our children, they should always start with the least-traumatic tests first. Drawing blood is harsh on them for a few minutes - but the terror goes away quickly. I can't imagine having to put a feeding tube in my daughter!!!! That would be just plain awful!!

If my daughter's test come back negative or inconclusive, we will probably just try the gluten-free diet and see what happens. I would certainly try the diet before putting her thru any invasive procedures (biopsy, etc...).

*hugs*

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KaitiUSA    7

These are the 5 tests I was talking about:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

These are the most common tests for celiac.

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Thank you for the replies. I believe I was tested for three of the 5, plus wheat. Aidan, my son, has had blood drawn many times, unfortunately.

I do not know what exact tests were conducted for celiac disease for him, but will follow up with his GI and ask. I was told she is very familiar with celiac disease in children, she's at UNC hospital.

The idea of a feeding tube chills me as well. I've been putting that off for some time now.

His food allergy panel is positive for dairy, egg (very high), moderate for soy, and mild for peanut. He won't eat chicken or fish no matter how much I try to disguise them. Does not eat red meat either, but will eat pork.

It's been very hard. If anyone knows of a good cookbook for gluten-free foods for children, I'll try it. The issue is, of course, he goes to daycare so it will be a real challenge to remove G altogether.

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hilaryw    0
Thank you for the replies.  I believe I was tested for three of the 5, plus wheat.  Aidan, my son, has had blood drawn many times, unfortunately.

I do not know what exact tests were conducted for celiac disease for him, but will follow up with his GI and ask.  I was told she is very familiar with celiac disease in children, she's at UNC hospital.

The idea of a feeding tube chills me as well.  I've been putting that off for some time now.

His food allergy panel is positive for dairy, egg (very high), moderate for soy, and mild for peanut.  He won't eat chicken or fish no matter how much I try to disguise them.  Does not eat red meat either, but will eat pork.

It's been very hard.  If anyone knows of a good cookbook for gluten-free foods for children, I'll try it.  The issue is, of course, he goes to daycare so it will be a real challenge to remove G altogether.

<{POST_SNAPBACK}>

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hilaryw    0

To whoever asked about good gluten-free cookbook for kids: Incredible Edible Gluten Free foods.

Re; those who think you should not do biopsy b/c it is so invasive, I respectfully disagree. We just had one for our 4yo who had positive blood work. It was not that big a deal, and the dr. got to see the extent of the damage, and got to look at her body on the way down. She diagnosed an ulcer which could be the cause of our daughter's anemia, and gave us ways to treat it. In short, going in for a look seems to me to be the wisest way to go, especially since it is the "gold std." What if you just go gluten-free and don't know about some other problem that could be caught via endoscopy? Also, I know celiac disease mimics some other diseases (such as cystic fibrosis, Crohns) and the biopsy was not consistent w/ these, thankfully (although I'm still doing the sweat test next week for my own well-being). We bought the book "Eating Gluten Free With Emily" for kids, which my daughter loves, tells all about the diagnosis, etc.

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    •   Ironic, We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking. My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat.  We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it .  We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day.  She says I know mom I know. The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well.  Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options.  Thoughts?
    • Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter.  I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again.  My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet.  But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility.  My son's ped doc has a  daughter who was recently diagnosed with celiac.  it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight.  she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life.  I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone.  However that being said, my family has both thyroid disease and multiple sclerosis as well.   I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions.  There are other types of TTG the doctors don't typically test for.  I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG  And I'm going to watch it very closely.  
    • It might generate based on traffic searches  or posts etc. My guess. I read them and respond because I wasn't on here as a member in 2012. I only use to visit then. So it's new to me V. happy friday   😋  
    • Just saying her TTg was 0 & her IgA was 27 doesn't tell us anything. Every lab can have different values so we need the reference ranges not just the results. Can you look back at the lab report & get those & post them please? Did they tell you she MUST be eating gluten every single day until all testing is done? Don't make a fatal mistake & take her off of gluten yet.
    • When the doc did the endoscopy, did he take biopsies? How many? From what locations? Get your records!!!! If he didn't take biopsies for celiac disease then he can NOT say you don't have it. 99% of the time, villi damage can not be SEEN by the GI doc during the endoscopy. And yes, the doc has no clue when saying it doesn't matter that you were gluten free for 3 years!
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