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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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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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