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Newly diagnosed daughter

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Hi= My daughter is 17. She has had stomach issues for several years. She has had stool test that came back elevated and then it would come back better, not normal, just better. They were never "in the Celiac range of abnormal"- that was about 7 years ago. We just have been managing her stomach aches and I think it became her normal. Now she is 17, recently had an elevated blood test, but again not so much it was alarming. She was referred to a pediatric GI who ordered an EGD. The results showed damage done to the Duodenum area with oozing tears- I hope Im saying that correct. In any event the surgeon said it looks to be Celiac. We are waiting the official path results. I have so many questions- How strict do you have to be? Do we need to separate her food prep area from ours? We live in house with others that are not willing to go gluten free.  Any help is appreciated

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17 hours ago, tbery said:

Hi= My daughter is 17. She has had stomach issues for several years. She has had stool test that came back elevated and then it would come back better, not normal, just better. They were never "in the Celiac range of abnormal"- that was about 7 years ago. We just have been managing her stomach aches and I think it became her normal. Now she is 17, recently had an elevated blood test, but again not so much it was alarming. She was referred to a pediatric GI who ordered an EGD. The results showed damage done to the Duodenum area with oozing tears- I hope Im saying that correct. In any event the surgeon said it looks to be Celiac. We are waiting the official path results. I have so many questions- How strict do you have to be? Do we need to separate her food prep area from ours? We live in house with others that are not willing to go gluten free.  Any help is appreciated

Welcome to the board. With a positive blood test and your GI saying it looks to be celiac you can go ahead and start her on the diet. She may get some relief before you even go back for the results. If you go here you will find a lot of info to keep her safe:

In addition all her first degree relatives should be tested even if they have no symptoms. Celiac is strongly genetic and not all with celiac have GI issues. If you have any other questions do feel free to ask them. I hope she is feeling better soon.

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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On 8/13/2020 at 2:18 PM, ravenwoodglass said:

Welcome to the board. With a positive blood test and your GI saying it looks to be celiac you can go ahead and start her on the diet. She may get some relief before you even go back for the results. If you go here you will find a lot of info to keep her safe:

In addition all her first degree relatives should be tested even if they have no symptoms. Celiac is strongly genetic and not all with celiac have GI issues. If you have any other questions do feel free to ask them. I hope she is feeling better soon.

We did get the official dx today and my daughter took it very hard. She has been gluten free since the surgeon told us it looks to be Celiac. My daughter also has food sensory- she has had this since she was a little girl. She literally has to inspect every bite before she eats it. If it looks weird- not enough breading on the chicken tender she will dry heave. We thought she would out grow it, but she hasn't. This is making things so much worse. She isn't likely to try lots of new things, so I'm waiting for the dietician appt./ 

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Professional help is a good idea due to this food sensory issue. There are gluten-free chicken nuggets out there that are good, as well as everything else. Please let us know how things go.

Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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