Where Do I Start?

[KristenPK]

We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

[Lisa]

  KristenPK said:

We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

I don't know how old your daughter is, but general, children under the age of five do not test accurately. She may gluten intolerant without Celiac. A positive dietary response is a good indicator.

Remember, the tendency for Celiac is inherited. You might consider having you and your husband check.

[ang1e0251]

Her response to the diet is the key for you. You of course can do more testing but she must be actively eating gluten for more testing. I don't even want to put myself through that. IMO, The fact that she is doing well is enough, I just don't think it's important to know the difference between sensitive & Celiacs, either way she is sick when she eats it. Don't let her be sick.

Maybe someone with more knowledge can give you a reason for further testing. I'm glad for you that your daughter is better.

[eeyore]

People are able to be gluten intolerant without having celiac -I am one of them, being gluten-senstitive.

[KristenPK]

  Momma Goose said:

I don't know how old your daughter is, but general, children under the age of five do not test accurately. She may gluten intolerant without Celiac. A positive dietary response is a good indicator.

Remember, the tendency for Celiac is inherited. You might consider having you and your husband check.

Interesting...she's only four years old. I'll talk to my husband about possibly testing ourselves as well. I was pretty sure that she could be gluten intolerant without being Celiac, but my doctor didn't seem to agree with me. I think I may have to look elsewhere for help to find someone with more knowledge on the subject.

Thanks for your help!

[purple]

  eeyore said:

People are able to be gluten intolerant without having celiac -I am one of them, being gluten-senstitive.

Ditto for my dd. As I look back over her 20 years, I can see little symptoms here and there as she was growing up. She has been gluten-free for 7-8 months (about 95-98 percent of the time). Her PMS has gotten back to normal. She still doesn't always sleep well at night and still has an allergy to dust/pets when she visits our house. She never gets bloated anymore. Never C or D or tummy troubles.

She has not had the Celiac tests but gluten-free diet has cleared up many little things and the extreme PMS. We don't have insurance nor $ for the doctor testing, so as long as I watch/listen to her closely and ask questions then I am comfortable with the gluten-free diet. She also drinks a little soy milk but not much dairy milk. Ice cream and cheese don't bother her. I cook and freeze gluten-free food for her so I pretty much know what she eats and she knows what to eat at potlucks/restaurants. She has had blood in her stools several times so we watch for that.

I watch my other dd closely and my dh too. We eat mostly gluten-free. Its beneficial to all of us b/c of the lack of chemicals/preservatives. I know what is in the food we eat.

[fatherof4yearold]

  KristenPK said:

We very recently discovered that our daughter has an intolerance to gluten. She tested negative for Celiac, however. I have several questions.... First, do I push the issue and have another/different test done? It's possible for her to have a sensitivity to gluten without being Celiac, right???

We're starting her on a gluten free diet, and it's going pretty well. Do I need to seek help from anyone--GI, nutritionist, etc???

you will find one of the frustrating things is you will be told the only way to know if you have celiac is quit eating gluten and see how you feel which is brutal when dealing with a child. My son had a biopsy of his intestine when he was four after 7 months of trying to find out what was wrong. The biopsy showed damage so they said he had celiac, his blood test came back higher then usual so we just went forward with a gluten-free diet. Not sure 4 years later if he has it or not (i don't know how to change my screen name) he is 8 now still gluten-free and gaining weight and healthy as can be. We have never gone back for another biopsy which you are supposed to do but he is doing so well we do not wan to go through the drama of a medical procedure again,

We went to several doctors and ending up at DuPonts childrens hospital and then went to CHOP's gastro who did the biopsy. When we were told we went to a nutristionist who specialized in celiacs. I think you have to do your due diligence and keep searching for answers. The nutrionist was the most helpful you might want to find one ho specializes in celiac. My son does not know life with gluten and so day he will have to discover for himself what he can eat and can't right now he is doing great. Thats my story hope it helps