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Sister Has Every Symptom But Her Dr. Won't Test


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#1 sydneysmommy

 
sydneysmommy

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Posted 05 April 2011 - 02:36 PM

I am so frustrated. Frustrated with doctors and society in general that take this diagnosis SO lightly. Isn't it true that if you have a sibling, parent or child with celiac disease then you SHOULD be tested for it??????

I was diagnosed via endoscope 10 years ago, and I was only 21. At that point my GI said it was pretty "advanced", and even back then awareness by doctors and general public was NOT what it is now.

I've told everyone in my family they should be tested.
They act like I'm being dramatic! Listen! I got this from SOMEONE!!!!!! It didn't magically appear in me.

I've also, since had 2 children and its like pulling teeth to get their doctors to order a test for them. the oldest is 5yo now, I think she's old enough to be tested. WHY NOT????

~~~~~~~~

About my sister.
I have 3 older siblings and the oldest has ALWAYS had problems with food. She has always had short stature (4'10 and the rest of us are 5'3, 5'5 and 5'11), gets BAD allergies, rashes in the sun, asthma, the list goes on. In the last 5 years her reactions to food have increased and she's had to literally elliminate 100's of foods from her diet. She's meticulous about it and keeps a diary and list.

I told her she NEEDS to get tested and she said "but I don't have diarreah" and I explained that's not just what celiac is and so she asked her dr for the test and he has now told her TWICE she doesnt need it, it's too expensive and he won't order it.

I told her to get a new dr. but her insurance is minimal and its hard for her to find one.



IM SO FRUSTRATED!


And my mom has diabtetes and Ive told her itd be just simple to do this and I think she wont bc if it turns out she does have it she'll have to go gluten free and she's not willing.




where can we find good doctors that wont treat us like idiots??????
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Sara, Austin TX
Diagnosed Celiac Disease
2001 via endoscope
gluten free for 10 years!

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#2 ravenwoodglass

 
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Posted 05 April 2011 - 03:45 PM

where can we find good doctors that wont treat us like idiots??????

It's not easy sometimes. Just ask any of us oldsters who fought for years for a diagnosis. If your sisters doctor won't test her and she can't go to someone different there is the option of her just doing the diet and seeing if it helps. We don't need a doctors permission to be gluten free. One other thing is since you mention she gets rashes she could go to a dermatologist and ask to be tested for DH, the skin form of celiac. If she has DH she has celiac and no more testing would be needed. Just make sure the doctor is familiar with DH and knows not to biopsy the lesions. The biopsy needs to be from intact skin next to the rash and they need to know that they are looking for DH at the lab so they do the correct testing.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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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