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

[sydneysmommy]

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????

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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??????

[ravenwoodglass]

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.