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3 posts in this topic

hello,

I have searched this site for quite awhile,have gotten alot of info,recipiesetc. I have a 4yr old with celiac disease and dh,also lactose int. every day seems to be trial and error but we get through it, I never ever thought about gluten until 9mths ,ago when our child was diagnosed, what a nightmare. Everything from food to meds, soap shampoo,calling companys, is very frustrating. My daughter is the only one at her daycare with celiac disease. I provide everything, this year she starts kindergarten a whole new can of worms to deal with. I see on this site alot of parents with children that have celiac disease. The meeting I attend for celiac disease is very informative but I have the only child so far,so I am hoping to converse with outer parents on this site.

Thank You so very much

momofcddh child

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You should try to find a ROCK group, raising our celiac kids which is a kids group and it is really helpful

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Hi momofcddh: My 8 year old daughter was recently diagnosed, the gluten-free diet took some getting use to but we are both feeling a lot better on it. :D

As far as her school, she is in the 3rd grade and I am sure she is the only one with celiac disease too. She takes her lunch everyday and I asked her teacher if she would mind warming her hot lunch up (rice, chicken,corn pasta or hamburgers), I told her it wasn't as simple as packing her a sandwich. It has not been a problem yet and I hope it never becomes one.

I provide her snacks and candy for the treat jar. Everything has went pretty well this year except one time a parent brought in cup cakes and no one called me to let me know so that I could provide her with one. They gave her one and she ATE it!!! I was a little upset, I sent another letter to her teacher explaining the seriousness of this disease and told her that was like giving a sugar treat to a diabetic child!!! I instructed them to give her a couple pieces of her candy if that ever happened again, but if someone would call me to let me know I would arrange for my daughter to have a special treat too!!!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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