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Sister Has Every Symptom But Her Dr. Won't Test
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2 posts in this topic

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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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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    • Hello, I see you posted this a long while ago, and perhaps--I hope-- it's no longer a matter of concern, but I thought I'd mention that shortly before I was diagnosed for celiac's, I had distinct yellow blotches on the corners of my eyelids toward my nose. Some months after I had stopped eating gluten, the yellow gradually went away, and--as it just reappeared now several years later, I googled the issue again.  I am only speculating here, but I do believe it is related to liver problems, which, in turn, are related to celiac's. I don't think liver function tests cover all aspects of liver health. I say this because when I was pregnant I developed a temporary liver condition called interhepatic colestasis of pregnancy (ICP), but my liver function tests had been fine. (The condition is diagnosed based on bile levels in the blood, not on liver function). I discovered upon some research that (of course!) ICP  can be associated with celiac's disease.  My hunch is this-- that celiac's presents two problems to the liver: 1) the malabsorption of nutrients--esp. Vit. K2-- that are vital liver health; 2) since gluten registers as a toxin to the immune system (I think?), perhaps the liver gets overloaded processing so much toxic material. Or perhaps there's some other reason. At any rate, poor liver health and celiac's do seem to be linked, according to a few articles I've found. Anyway, hope your problems are resolved now.  
    • my daughter did stool test from enterolab but this gluten sensitive blood test is from http://requestatest.com/tests/search    
    • OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
    • NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is a greater chance you are celiac or "early stages" especially in light of your symptoms. All 3 of those factors weighed together was what I was referring to.
    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
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