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Celiac Questions
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My daughter was diagnosed with Celiac disease 2 years ago and I am still trying to figure out all the do's and don'ts. It was hard enough learning how to cook and buy the right foods but trying to understand something that I personally can't feel is hard. My daughter tells me what is going on and I try to help her even though I have no idea what to do. 

Recently she has been waking up feeling hot with stomach cramps and will sometime throw up and have to use the restroom. It will eventually ease off after I have her put a little food in her to see if her stomach is just looking for food. I am not sure if this is something that is considered normal with celiac disease or not. I was able to get the doctor to give her some sample meds to see if it could be acid building up overnight in her making her feel this way. 

I have a lot of questions and I am just looking for help with things to help my daughter or the right questions to ask the doctor to see what can be done. I hate that my child is hurting and I have no way of helping. Any information would be greatly appreciated

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Tell us more. How old is she? Do you live in a gluten-free house? Does she have her own toaster, condiments, cookware? She might be getting cross-contamination from any of these. If she is a youngster, she may be getting exposed at school, either from her friends, from Play-Doh, or even from something her teacher has her doing.

 

If you read the Newbie 101 thread you will learn a lot about the places gluten can hide. I suspect though that if she has been gluten-free for two years and is only now starting with these  stomach problems that there is something new causing it.

 

Or she just might have a "bug".

 

Either way, it sounds like you are having some problems learning about how to keep her gluten-free. You came to the right place! After reading Newbie 101, check out other threads, especially the breakfast lunch and dinner threads.

 

Welcome, and feel free to ask lots of questions. We're here to help. :)

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    • I thought I would update you all.  I started to eat gluten shortly after this post.  I was miserable by the time I had my EGD.  The doctor gave a diagnosis after the EGD was completed, duodenitis, gastritis and hiatal hernia.  I had abnormal mucosa of the whole stomach and severe inflammation.  The biopsy results came back today, they stated early stages celiac disease.  I wonder what it would've shown if I wasn't on a gluten free diet for two years?  My doctor said he still wants me to come in for a talk, he doesn't really know if he should call it celiac disease since it's early stages....  WTH!  I've really got to find a doctor that specializes in Celiac Disease...    
    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
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