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Now There Saying Acid Reflux

Guest flowermom6117

By Guest flowermom6117
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest flowermom6117
Guest flowermom6117
Posted

Ok, so now I'm scared and upset again. We seen the G.I. today, drove 2 hours in a blizzard there and back. I had high hopes that we were finally going to get the answers we have been waiting for, for 3 years, but nope doc says all test came back negitive for celiac. Instead he diagnosed my 4 yr old who only complains of gas with acid reflux. How can this be, she never spit up as a baby, never complains of more than cramps and farting too much (her words not mine).

Now what, I really thought testing would be possitve, she has a really strong wheat allergy, along with a lot of other foods. I was so hopeful. Celiac explained so many of the symptoms she was having. Now I just don't know. I know I go gluten free anyway, but do I have more testing done since I have no explaination for a lot of really scary symptoms? The main one being high fever for days with no other symptom, or the joint pain mainly her knees.

Part of me thinks I just wait and see if six months of gluten free cures everything or not. Then there is the part of me that is scared to risk another trip to the E.R. to get a temp of 105 degrees brought back down. We have been lucky that there are no lingering problems from the times she has done this in the past.

My poor child is so scared to even drive by a doctors office or hosipital because of all the time she has been stuck with a needle. I wish she was old enough to tell me exactly how she feels and what she wants.

Please someone give me advise.

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kareng Grand Master
kareng
Posted

she has a really strong wheat allergy, along with a lot of other foods.

If she has a wheat allergy, she probably wasn't eating much gluten before the blood tests. I know you weren't feeding her wheat if she is allergic to it. If she wasn't eating a "full gluten diet", she likely wouldn't have enough antibodies to test positive.

I would just get rid of any little bit of Barley that might be slipping in as malt & then she will be gluten-free.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree with Karen. Do get her strictly gluten free for a bit and see if stuff resolves. Being gluten free will not have any impact on any other testing. Do be sure to eliminate rye and oats also. Also be careful about CC and stuff she may play with like play-doh.

beachbirdie Contributor
beachbirdie
Posted

Ok, so now I'm scared and upset again. We seen the G.I. today, drove 2 hours in a blizzard there and back. I had high hopes that we were finally going to get the answers we have been waiting for, for 3 years, but nope doc says all test came back negitive for celiac. Instead he diagnosed my 4 yr old who only complains of gas with acid reflux. How can this be, she never spit up as a baby, never complains of more than cramps and farting too much (her words not mine).

Now what, I really thought testing would be possitve, she has a really strong wheat allergy, along with a lot of other foods. I was so hopeful. Celiac explained so many of the symptoms she was having. Now I just don't know. I know I go gluten free anyway, but do I have more testing done since I have no explaination for a lot of really scary symptoms? The main one being high fever for days with no other symptom, or the joint pain mainly her knees.

Part of me thinks I just wait and see if six months of gluten free cures everything or not. Then there is the part of me that is scared to risk another trip to the E.R. to get a temp of 105 degrees brought back down. We have been lucky that there are no lingering problems from the times she has done this in the past.

My poor child is so scared to even drive by a doctors office or hosipital because of all the time she has been stuck with a needle. I wish she was old enough to tell me exactly how she feels and what she wants.

Please someone give me advise.

You might ask them to test her for Juvenile Rheumatoid Arthritis if they have not already done so. That would include ANA (anti-nuclear antibodies), ESR (erythrocyte sedimentation rate), and Rheumatoid Factors. Cedars-Sinai had a nice list of symptoms, you can find them other places on the web too:

Open Original Shared Link

* High fevers that tend to spike in the evening and then suddenly disappear

* Limping or a sore wrist, finger or knee

* Rashes that suddenly appear and disappear in one or more areas

* Stiffness in the neck, hips or other joints

* Joint stiffness that is worse after rest

* Sudden swelling of the joints, which stay enlarged. These joints may appear reddened and feel warm.

Hope you get it sorted out soon.

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