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Guest flowermom6117

Now There Saying Acid Reflux

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Guest flowermom6117

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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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.


 

 

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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:

Symptoms may include

* 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.


1999 - Hypothyroid

2003 - Hashimoto's Disease

2008 - Diverticulitis

2009 - Significant Vit D Deficiency

2011 - Diverticulitis again

2011 - HLA-DQ2.2

2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

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