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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?  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

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Hello! I'm new to this, so please forgive me if I make any errors.

I have a 5 year old son who displays the following symptoms:

- constipation

- extremely large bloated belly

- gas

- skin "itchies" aka "unexplained hives"

- tiny bottom, legs, and arms

He has been tested by blood and negative to having any food allergies.

Here is the crazy thing. When he wakes up in the morning, his belly is normal. He looks like a normal 5 year old. By evening, his tummy is HUGE! He does pass gas at night. He will wake up with a normal belly the following morning and the process repeats.

We have gone dairy free for approximately 2 weeks. I have not seen many improvements yet. Maybe I haven't given it enough time, or maybe I need to go gluten-free. Hoping someone has some experience and can offer me some advice.

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Was he tested for Celiac? Wow!! That would make any mom worry!! I'd take a pic of his belly in the AM and then in the evening and take it to your Doc! Make sure he sees the difference. I would think he may be Celiac but I am kinda thinking like alot of other people, when it comes to children, you really want to have them tested for Celiac and not just put him on the Gluten free diet. You can try the Gluten free diet for a few days and see if there is a difference .... 

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Yes, he was tested for celiac and it was NEG. it is just thr weirdest thing!! Something isn't right and I want to get to the bottom of it. I take pics all the time. I had the brilliant idea of measuring his belly first thing in the am and then at pm to get more accurate info. Guess we need to make another trip back to the GI specialist.

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I should have also mentioned, that his diet is not very well balanced. He doesn't eat many fruits, hardly any veggies, and he eats a TON of wheat bread...hmm...sure does make you wonder, huh?!?

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That is EXACTLY how my stomach used to be, I would get more bloated as the day went on. :( not a good sign. I'm glad you are still looking into it.

Do you know what tests he had? These are the usual tests:

tTG IgA and tTG IgG - most popular tests with docs, not always accurate in kids

EMA igA - shows advanced damage and not often positive in kids

DGP IgA and DGP IgG - often the best test for detecting celiac disease in kids

Serum IgA


The first three tests indicate intestinal villi damage as seen in celiacs. The serum IgA is a control test to make sure you make enough IgA for the IgA based tests to be valid; 5% of celiacs have low IgA. The AGA tests show gliadin sensitivity in celiacs and possibly those with non-celiac gluten sensitivity (NCGS) who have the same symptoms but no villi damage.

This report has more info on pages11-12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

I would suggest doing more testing, possibly the endoscopic biopsy. If everything comes up negative, he might be NCGS and a gluten-free trial of 3-6 months would be diagnostic. If he does have NCGS, it is just as important to eat 100% gluten-free as it will continue to negatively impact his quality of life and possibly lead to further health problems down the road. :(

Best wishes!

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Did measuring the belly work?  Mine once increased 9 inches over night after eating pizza!  I haven't eaten it since.  Usually, mine does increase in size during the day.  When I try to measure the belly, I usually don't see much of a difference.  I am wondering how taking a picture would be?  Stand in front of a grid maybe to see better?

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2.5" bigger on the top part of his abdomen, and 2" bigger right around his belly button. Measurements were taken at 9 am today and 9 pm this evening.

Foods consumed today: French toast, hot dogs with buns, and pizza (no cheese). Still on a no dairy diet. Doesn't seem to be the culprit.

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Good luck sweetie!! I hope you find the answers!! 

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