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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.

So Many Questions
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2 posts in this topic

I will try to keep this post from being very long but I also feel like everything stems off each other so that will be hard. I really need some help though please!

My 15 mos old was diagnosed several months ago as failure to thrive. We spent all summer doing many tests with a GI and did an endoscopy in July....GI was convinced she had Celiac. She is DQ8 positive but everything else including the endoscopy have come back negative. My DD was not gaining weight, has a very distended belly, and was pooping 4-7 times a day. After the endoscopy we decided to try a gluten free diet as the GI threw his hands up and didn't know what the problem was. He laughed at me when I suggested just trying a diet change (yes, we have fired him). He doesn't believe in just intolerances....it's either Celiac or nothing. She's been gluten and wheat free for 5 weeks now and at her 15 mos check up last week she had gained 2 pounds and grown 1 1/2 inches....huge growth for her! She also went from pooping 4-7 times a day to only 1-2 times. Ped was thrilled and said to keep her gluten free.

She had a seizure back in March (no answers why). She has had questionable seizure like behavior since (waiting on EEG results and is scheduled for a MRI). She was hospitalized 3 weeks ago because her blood sugars crashed to 43. Drs finally began to take me seriously after that. She was diagnosed with ketotic hypoglycemia. Endocrinologist doesn't know if it is caused because of an underlying issue of "Failure to Thrive" or something completely separately.

The last 2 weeks she has been giving me such a hard time eating ANYTHING. She used to have a huge appetite and would eat anything and everything (which also didn't make sense because she wasn't growing). I feel like removing gluten is definitely helping but I still feel like there's a problem. Here are my questions.....Is there such thing as just a gluten allergy/intolerance or does it mean she has Celiac? I have removed gluten/wheat but haven't gone strict with worrying about cross contamination or trace amounts in things.....can this be affecting her not wanting food at all? Her belly is still so distended...how long would this take to get better? Even things that used to be her favorites/treats she is fighting me on. I've heard that removing gluten can temporarily make people sensitive to dairy....could this be it? In the last week she has lost over a pound of the 2 pounds we worked so hard to gain :( Per the advice of the nutritionist we saw in the hospital she is also on Pediasure which I don't offer until I've spent a good deal of time trying to get her to eat solid foods.

I'm open to any suggestions or tips! We are in the process of getting a new GI now. I just don't know what to do. Obviously when she doesn't eat it also makes her blood sugars low which can't be happening.

TIA!

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There are a ton of issues which can cause failure to thrive in infants. I think you are doing an excellent job finding a new GI and working so hard to offer her solids before the Pediasure. There are some pretty strange allergies out there, aside from the eleven you hear about all the time, and its hard to diagnose allergies in infants (Corn, Oats, molds...etc.) . If you are waiting on test results for the EEG and an MRI my course of action would be the following; keep up the pediasure and offering solids, and pretend you are a nurse. Keep a chart/ notebook of her intake and her temperature three times a day. If blood sugar is an issue, start taking that as well. Sending you hugs and support.

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    • Newbie: mother to coeliac kids
      Until he starts getting better he really needs to stick with soft, bland foods. I put a mashed potato soup recipe in the recipes area. What is healthy for a normal person isn't necessarily good for an inflamed digestive system. Anything spicy, acidic should be avoided. Fruit is acidic. I've read that pickled cabbage is good, but you couldn't pay me to eat anything pickled when I was nauseous. Things that I think would be safe are: broth mashed potato soup (the am. cheese and butter make the broth taste great) Baked potato mushy meatballs, no spices other than salt low fat vanilla ice cream with whey in the ingredient list   If these things work out try adding summer squash cooked in olive oil, add salt Summer squash tastes good in mashed potato soup.   Twice as many small meals are easier on your digestive system.   I am not a doctor or nutritionist, just been there, done that, want to help.  
    • Newbie: mother to coeliac kids
      I've just had a call from out GP with biopsy results. She said it confirmed celiacs and has a March 4 level. Does this sound correct?  She said she expected it given his antibodies were the highest she had ever seen.  We have an appointment on Friday for follow up. At least we know for sure now. 
    • Needed support
      Yes I got and colonskpy and endoscopy back in Oct. They said these tests were negative. However I recently found out at my new DR that notes on my tests(colonskpy ) said cronic inflammation of my intestines. I had also been eating mostly gluten free at least six months before the test. I have the gene for it and a huge amount of  symtoms so the g I dr said she could go ahead and dianose me with Celiacs or I could eat gluten for two weeks and get the colonskpy and endoscopy done again. I chose the first one and I have been feeling better since going competly gluten free. The ct scan is for them to check for cancerous tumors and possibility of Crohns just in my small intestines. She did say that I might have more than one thing going on. I didn't realize that you can't see Celiacs on a cat scan. I know that the tumors can happen with long term undiagnosed Celiacs and I'm not sure if Crohns is related as well. 
    • Newbie: mother to coeliac kids
      Yes, the broth helps. He wolfed some down and felt okay.  He insists he didnt eat anything from his friends. He did however gobble several gherkins last night - I checked they were gluten free but I am wondering now.  Dammit. He loves gherkins.  
    • Confused
      Nothing big to add, just want to reinforce what @cyclinglady said.  From what I have learned, your GP cannot diagnose celiac.  The best they can do is find indicators (such as the test you got results for) which are really neither definite positives or definite negatives - they're just warning signs, and refer you to a specialist. See your GI.   They'll be able to give you a real informed opinion so you won't be in limbo.  And as she said, don't cut out the gluten until the GI tells you to - even the GI's tests are indicators that appear as a result of relatively recent gluten intake.
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