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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity

Should I Have Her Tested

3 posts in this topic

My daughter will be 8 here in a couple of months and has had digestive issues almost from the start.

At about 3 mo old she developed cholic.  Took several tries on different formulas to get that to even out a little.  Around 9 mo she started having constipation issues.  Not usually going, as she went regularly (most of the time) but her poo came out in hard pale little pebbles that continued until she was around 5.  Now adays she will occasionally have a non pebbly stool and the color is browner than it used to be.  At the same time (9mo) she started have night terror like episodes nearly every night.  So bad that the doc suggested an MRI for epilipsy but we argued that someone having a seizure doesn't usually chuck things at your head.  She didn't sleep through a night until she was over age 4.  She has been falling in the height % for the past several years, she's gone from 65% to 45% in the past 2 years but her weight gain is steady and in the 98%.  

When she was between 2 and 3 she quit eating almost all together, for the better part of a year all she would take was milk and occasionally pasta.  Durning this time she put on 15 lbs. (alot for a toddler)  Doc refered us to an Endo, but we lost our insurance before we could get an apt. and she started eating after that so we just dropped it.  Blood work showed normal but elevated blood CO2 levels.


So now she is nearing 8 and is quite a heavy little girl and starting to notice it. Especially in the tummy as she has always had the "toddler buldge" and still does. She has occasional bouts of general stomach aches that usually last a few weeks, but then subside.  She gets headaches now and then.  Still has trouble sleeping at night and wakes up groggy alot.  But overall she's an incredibly healthy kid.  Rarely gets sick, and has only been on antibiotics since age 2.  Doesn't have any food allergies or even bad seasonal allergies.  The doc just says to keep an eye on her, but aside from recomending some OTC stuff for the tummy upset really hasn't said anything other than that.


I just can't shake the feeling that something is off.

I know many of you have been through the gamet of issues before getting a celiac diag.  What do you all think.  Should I have her tested?  I don't really want to go gluten-free just cause as that is the majority of her diet and I know for a fact that when she isn't eating enough she packs on the pounds quick and I don't really want to make her bigger just on a hunch.


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Yes, get her tested.


Celiac has a wide range of symptoms.


The fact that she packs on lbs when she isn't eating enough seems to me like her body may be hording what nutrients it can get. Some celiacs have major weight loss before diagnosis and some gain weight.


Another thought is NCGI (non-celiac Gluten intolerence). It can mimic many of the same symptoms as celiac but without the auto immune response and  small intestine damage.


Gluten is not necessary in the diet. The only thing that wheat, rye, and barley contribute is gluten and everything you need in a diet can be found elsewhere.


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I agree. Get her tested, and if her tests are negative you can still try the gluten-free diet for a few months. My belly gets quite distended and bloated when I eat gluten. I have lately been accidentally glutening myself and I put on 10lbs while eating less over 2 months. I recently discovered what I was doing wrong and the weight is melting off again. Two of my boys, who tested negative for celiac disease, had a bit of a belly but slim legs too. My oldest has (apparently) had his growth affected too and has fallen from the 85th percentile to the 35th%.  He's growing and putting on a couple of pounds a month now after being stuck at the same weight for over a year.


The tests to look for are:

  • ttg IgA and ttg IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG (older tests)

Best wishes


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