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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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Mrs.Patchon

Does This Sound Like Celiacs?

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Hi Everyone,

 

I believe my 3.5 year ols son has Celiacs. He has not been tested yet, and has been Gluten and Dairy free for almost 2 weeks.

 

About a year ago I noticed changes in his behavior. He had horrible temper tantrums that would last for *hours* most of time over nothing, and lost his ability to focus and concentrate. He developed dark circles under his eyes and regressed on his potty training and has had slightly delayed speech. He also had always had a loose, usually light brown or reddish, very foul smelling stool, never a normal brown formed stool. His pediatrician suggested ADHD at the time, but in my gut, I just felt that was not what was going on so I did not pursue treatment.

 

A few weeks ago, I stumbled across a blog post about how diet can affect a toddlers behavior. The blogger described her daughter (actually diagnosed with celiacs) as having all the exact same symptoms as my son. I continued to research and decided to take my son off dairy and gluten. I took him off dairy for 2 days and noticed an explosion in his speech so I went ahead and cut out all the gluten. So far, his temper tantrums have disapeared, he has started holding his bladder through the night or waking up to pee, no accidents, he's able to concentrate on his toys and books is able to occupy himself now and for the first time ever tonight he had a *normal looking, normal smelling* stool. His appetite has really picked up. He does still have his dark circles and has never complained of stomach aches like I keep reading of other children doing.

 

Does this sound like Celiacs to you guys?

 

Thank you,

Brandi.

 

 

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Hi Brandi,

 

Yes, it does sound like celiac disease symptoms.  If you want to have him tested by a doctor for celiac disease, you need to put him back on gluten right away tho.  And then schedule the blood antibody tests.  The antibodies that cause the damage in celiac disease decrease when gluten is removed from the diet.  So testing is useless after being on the gluten-free diet for while, because the antibodies don't show up anymore.  The sooner you get the blood drawn, the better at this point.

 

Even if the blood tests fail though, you know now that he is having some kind of reaction to eating gluten.  So it makes sense to take him off gluten after the testing is complete, regardless of the test results.

 

It might be easier to get school to accommodate his diet restrictions if there is a formal diagnosis.  The 2nd step in diagnosis is usually an endoscopy to take biopsy samples from the small intestine.  Some hospitals have pediatric celiac centers where they might be able to do the endoscopy and blood tests sooner.  Otherwise going through the normal GI route can take months, which is not good.

 

It is possible to do testing later after being gluten-free for a while.  But it requires going back on gluten for up to 3 months, (a gluten challenge),  Which can be very hard and unpleasant for a person with celiac disease.  It can take that long for antibodies to accumulate in the blood stream in detectable levels.  That's why the testing is best done before starting the gluten-free diet, as doing the gluten challenge later can be painful and stressful on the body.

 

Some starting the gluten-free diet tips for the first 6 months:
 
Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.
 
Helpful threads:
 
FAQ Celiac com
 
Newbie Info 101

 

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I agree with GFinDC, in does sound like it could be celiac disease. If you plan on testing, do it sooner rather than later so the gluten challenge can be a bit shorter - 3 months back on gluten can be really hard on people after they have gotten used to feeling well instead of poorly.

 

This site, on pages 10-13, discuss the tests that can be done, the more the better.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

You might want to consider testing the rest of the family too; celiac disease runs in families.

 

Best wishes.

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I'd push for a Celiac blood test like the others folks have mentioned.  Do it now before you take him off gluten for good.  Why test?  He's already doing better on the gluten-free diet, right?  A formal diagnosis will be extremely helpful when he goes to school as well as getting support from extended family and friends in maintaining the gluten-free diet.  

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Sounds exactly like my daughter, she also never complained of belly aches. Most of her symptoms were behavioral as well as her not having any appetite (perhaps nausea) and the dark circles/sleeplessness. I am so glad you may have found out how to help your son! It will change your life.  The biggest struggle for our family is realizing and accepting that we cannot eat out (or if we do, we must prepare a seperate meal for our daughter) and learning that foods that say "gluten free" are not necessarily gluten free. Alot of trial and error there but it's getting better and better.

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Another smart momma, sounds like you found your answer. Talk to your doctor - maybe they can try blood test before it's totally out of his system. You are not the first mom to try gluten free & see it work, then have to face the doctor (who missed the signs all along) telling you six more weeks on gluten! Follow your instincts, they are good ones.

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