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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.

Toddler Has Celiacs?
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4 posts in this topic

my 2 yr old has always been small. she was born at 37 wks 4 lbs never on the growth chart. She's 27 mos and weighs 20 lbs and is 30 inches tall. Her general pediatrician sent her first to endocrinology PEDs - all those tests came back normal, then they sent her to a gastro ped and they did an endoscopy and found "minimal blunting" of villi but all bloodwork came back negative which I know is not reliable at this age. We have gone gluten free for almost 4 months now but have not noticed ANY improvement in her weight gain or appetite. She never had any classic celiac GI symptoms like diarrhea or vomiting, only constipation and poor weight gain (again she's always been small) and was never a good eater even with her formula as a baby. Other than the "minimal" blunting of villi, the endoscopy did not show anything out of ordinary (like reflux or anatomical obstruction that would cause pain for to not like eating which is what they were originally thinking). My question is could there be a mis-reading of the biopsy by pathologist/gastro dr? Also can something else have caused the minimal blunting? Shouldn't we SEE some improvement by now if gluten is the culprit for her lack of weight gain and meager appetite?

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Assuming you have removed all sources of contamination (sneaking crackers from other kids, other care providers inadvertently feeding gluten, commercial playdoh, access to grain-based pet foods, shared kitchen equipment like toasters, shared condiments like peanut butter, and so on), then yes, I would expect to see improvement (not necessarily complete, of course) in a 2 year old. Are you certain there is no cross contamination?

Rarely, casein can cause the same problem - damaged villi and weight issues. Unless you used a special, expensive, formula that broke down the casein, or used a soy based formula instead, and if she's now consuming dairy, that is a (again, rare) possibility. As a parent of a toddler, it'd probably be the next thing I try, myself. And then other food and environmental issues.

But I wouldn't stop working with the doctors in case there is something else going on.

Is there any family history of celiac disease?

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We have removed all gluten in our house. Daycare confirms all gluten-free and they are super careful when it comes to food allergies because of the legal liability that's what they told me and I have observed them during their lunch times it is gluten free. Toddler still has constipation and not a great eater. She's been at 19-20 lb mark for almost three months (she fluctuates when she gets a cold and doesn't want to eat).

Gastro PEDs dr wants to do another scope to see if there's been any healing but how can there be if no symptons have improved?

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I know the daycare is saying they're being careful (and I am sure they're trying) but trust me, your daughter is definitely being exposed to cross contamination. If there are other kids in the same room eating gluten foods, there are crmbs everywhere. And my son has been known to snatch bits of crackers and cookies off the floor and pop them in his mouth in a few nanoseconds. And playdough is a staple at those places.

If we have him home for a week or more, we see significant improvement in his bowel movements.

Could you take a week or two and keep her home to completely control her food intake and environment?

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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