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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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Christine0125

Probiotics? Other Supplements For Kids?

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Anyone give their kids probiotics or other supplements to help? 

 

A little background: My almost 10 year old was diagnosed with celiac last December.  The first few months were great gluten-free but lately she's been having tummy ups and downs (she's at the too embarrassed to share bathroom issues with me phase).  I started her on gummy probiotics a few weeks back and it really seemed to help so I thought I'd found the solution to keeping her regular but now it seems the issues are back. 

 

Any tips and tricks from parents out there as to what helps keep your celiac kids feeling well?  We plan to keep a food log to see if there is another obvious trigger that we haven't clued into.  95% of the time we eat at home in a completely gluten free kitchen.  When we eat out, I'm also celiac so we eat the same thing and I've not felt any obvious signs of gluttening (although I know she may be more sensitive than me). 

 

So hard to figure out when she's at an age where if I push her to share too much then she shuts down completely so I feel I'm walking a thin line trying to figure things out.  I do have her onboard with the casual "hey, lets just experiment with the things you eat a bit so we can make sure you feel good all the time." 

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Has the doctor looked at any other food sensitivities? Milk/casein is frequently a problem for kids. My child couldn't eat dairy for years after going gluten-free.

Another thought is school environment. Is your child getting contaminated at school? Lunch room is the obvious place. What about food based learning? Art class? Teacher rewards like candy?

Does your child bite their nails? Or possibly not wash their hands well enough before eating?

Good luck finding the source of the problem.

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It does sound like she is still getting gluten.  Most likely at school.  And I'm assuming she is in school and not home schooled.   When your first diagnosed, the motivation is great to comply with the diet because the reward is immediate, feels better.  Then she's out for summer vacation, the diet is still going well, Mom is still making food decisions.  Now School has started up. Maybe she is making mistakes at school, feeling pressure from peers, cross contamination.   And of course, another intolerance is possible.  I wouldn't start supplementing with vitamins unless she is actually deficient.  I think a pro-biotic is fine.

 

Colleen

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She very well could be getting cross-contaminated at the lunch table although she purposely requests no nuts in her lunch so she can eat at the less crowded peanut-free table.  We did a 504 plan for her which I could update to have her sit separately although that's a tough call based on the social aspect of elementary school. 

 

I'm certain she's not experimenting due to peer pressure (not that type of kid at all).  I do likely need to explore dairy or other intolerances more... hence that food log that I've been talking of starting but haven't yet done.  I've seen apps for that, anyone use one?  Maybe I'll ask that on one of the general boards. 

 

Thanks for your input!

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Yea, I don't think I would have her sit separately.  Although I wonder if she is getting cross-contaminated with her school lunch.  It is prepared in the same kitchen at school?  Or do you pack her lunch?  Otherwise, like you said, look for other intolerances.  Dairy would be the first to try.  I don't know of any apps.

 

Colleen

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If you have the option of volunteering for lunch duty for 1 or 2 days, that can give you the insight you need regarding cross contamination at lunch. My DD is 10 and in 5th grade and they have switch classes. If your girl has the same make sure the switch desk is being wiped down after snack time. Also a snack/lunch mat brought from home will dramatically cut down on CC issue's. 

 

Keep up the food diary for a while you may notice a trigger like dairy, soy, oats or corn. Probiotics are a good idea. My DD has multivitamins,Omega 3 and Fiber gummies everyday. We are 3 1/2 yrs gluten-free and she still has constipation issue's with the opposite happening when we use Miralax, and with the added DX this year of Hashimota's disease there is always something. My girl doesn't eat veggies so until that changes for us, it will always be like this.  

 

good luck

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My daughter is four and was just diagnosed in June, and for the first couple months I gave her probiotics every day. We used Go Live flavorless powder packets from Whole Foods, mixed with juice. It seemed to make a really big difference at first, and on the occasional day when we'd run out or I'd forget she'd have almost-diarrhea, like she did before diagnosis.

After a couple months I started giving her the probiotics a few times a week instead of every day, and this was also a time when her general behavior and mood started to decline again. At first I thought she must be getting glutened at pre-school (which had just started), though they are extremely careful about cc and all art supplies and snacks served there are now gluten free. Then I thought that maybe the decline was just due to being overtired and not napping at school. And maybe it was one or the other of those things - I'm really not sure. But somewhere along the line I realized that I'd also reduced the probiotics around the same time, so I resumed giving them to her daily. Within two days, she was on the upswing again! Maybe it was a coincidence, but I'm not planning to stop again anytime soon. A nutritionist at her GI's office had recommended either yogurt or probiotic supplements every day for a while after diagnosis (she didn't say how long), so we're going to stick with them for at least a few more months. Good-quality probiotics sure are expensive, though!

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Probiotics seem very complicated to me. I took my 12 year old daughter to a nutritionist on Saturday, and she said that one should only take probiotics for a short period of time, for example, for 2-3 weeks after being on an antibiotic. My daughter was taking 2 different probiotics which the pediatric GI had proscribed, and my daughter was continuing to have stomach aches. The nutritionist said she thought the stomach aches might be from the probiotics.

 

We're now off the probiotics and totally off dairy. We'll be off dairy for 1-3 weeks and see what happens. If all stomach symptoms go away, then we'll start dairy really really slowly - the nutritionist gave us a way to gradually add back the dairy foods, starting with the ones that are most easily tolerated.

 

We're also keeping a food diary. Here's what to put in your diary -- meal, time of day, location, amounts of the foods you eat, and any pain. I'm already finding this diary helpful to look at. I think including all of these details are really important. We'd tried a diary before and didn't put amounts and also didn't write down if there was any pain...

 

My daughter also had some blood tests for vitamin levels and so on. I think these are a good idea if they help you see what's going on. If your child is constipated frequently and/or diarrhea frequently, other issues will possibly creep in such as anemia...important to watch out for this.

 

Good luck!

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