Are Doctors Missing 90% of Celiac Disease Cases?

There really is no excuse for the percentage of undiagnosed individuals to be so high. There is a simple blood test out there that measures the certain antibody found in persons with celiac. I was one of those persons. It took 10 years for a doctor to finally give me this test. I think anyone who goes to a doctor complaining of chronic diarrhea should be given this lab test to rule out celiac.

Do you have to have another endoscopy after 5 years of celiac diagnosis? My blood work is normal.

Unfortunately from what I have read and been told by doctors, the test only yields a positive result for less than 50 percent of people who have celiac, as in my case. It took 24 years of doctors and specialists not being able to diagnose me and my having to self diagnosis. I came to the diagnosis after researching my celiac related skin condition, dermatitis herpetiformis, explained my observations to a GI celiac specialist and two dermatologist, one of whom has celiac and the same skin condition. I agree that it should not be so difficult to diagnose celiac disease. There is also a great need for awareness campaigns; I'm tired of people deriding my need to eat a gluten-free diet as a fad.

Damn rights! I went to my doctor as a teenager, trying to explain my symptoms, which would have been the brain fog that would wham my head. She ended saying she would send me to a psychiatrist. b%$@#! 30 years later my sister figures the gluten/Celiac disorder. I spent 30 years with gluten ruining my life. After my sister's diagnosis, I get genetic testing done and there it was in black and white.

I have a friend in Australia in the medical field and she says they test for celiac disease first with symptoms of diarrhea, skin conditions, etc. It's American doctors that are behind the times. BTW, I self diagnosed my celiac disease. I once told a doctor that if I had waited for a doctor to diagnose me I'd be dead by now.

There really is no excuse for the percentage of undiagnosed individuals to be so high. There is a simple blood test out there that measures the certain antibody found in persons with celiac. I was one of those persons. It took 10 years for a doctor to finally give me this test. I think anyone who goes to a doctor complaining of chronic diarrhea should be given this lab test to rule out celiac.

My problem was not chronic diarrhea; it was being deferred from blood donations due to anemia. But once I was diagnosed, I realized the only reason I had called in sick for work for several years was due to diarrhea. It just wasn't that often. The problem is that there are also people who don't have the most common symptoms, but they do still have celiac, which makes it even harder to diagnose.

On 10/24/2017 at 5:49 AM, Guest corrie said:

Damn rights! I went to my doctor as a teenager, trying to explain my symptoms, which would have been the brain fog that would wham my head. She ended saying she would send me to a psychiatrist. b%$@#! 30 years later my sister figures the gluten/Celiac disorder. I spent 30 years with gluten ruining my life. After my sister's diagnosis, I get genetic testing done and there it was in black and white.

I totally relate with that I've had epilepsy most of my life I'm 44 and the mystery symptoms that go with it dizziness, nystagmus, awkward gait, migraines.i first got sick at 8 years old have had these symptoms ever since and not a single Dr could figure this out! I had to do this myself it pisses me off so much that all the suffering and praying to the porcelain God could have been fixed yeah I'm pissed!