Chronic Health Conditions Discussion and Support

In America, it takes an average of 12 years to finally reach a diagnosis because it's the last thing the doctors think of and many of the symptoms appear to have nothing to do with the disease - infertility, chronic anemia, brittle bones, low thyroid, eye problems, just the gamut of strange symptoms with only a few presenting with gut related things.

In Europe, OTOH, people are diagnosed much more frequently and quickly, because it's one of the first things the doctors over there rule out.

Because of that, it was thought that Celiac was much more prevalent in Europe than in America. But the Framingham study put an end to that myth. They blood tested a large cohort and the prevalence is the same, it's the diagnosis rate that is so different. So, one in about every one hundred people has true Celiac. But it is on a spectrum and many people are mildly intolerant without having the full on disease and some babies are diagnosed because they have failure to thrive. That's fulminate disease and the babies can actually die if not diagnosed, can and unfortunately, have.

I would never have been diagnosed had it not been for my son. We decided when he was six to try him on a gluten/casein free diet. We always had a rule that we wouldn't try any treatment on him before trying it out ourselves. So, I volunteered. I felt just awful, like what I imagine an addict would feel like coming off of a drug. So, after my six weeks, I went back on gluten and felt much, much worse. So, three months later, I went to a GI doctor and said I wanted to be tested for Celiac. He rolled his eyes but we did it. Both ends, you know? And he said after, that he couldn't understand why I had never been diagnosed, my upper GI villi were flat. I had severe disease with all the symptoms I mentioned above, but no one ever thought, including me, to assess for Celiac. So, now, while I'm super sensitive to gluten, I actually feel healthier than I did when I was 20

I am a strong advocate of not self diagnosing and I'm seeing an awful lot of that. But then, those people are swearing they feel better and they may well be on the spectrum.

I'm actually kind of happy that Gluten Free seems to be all the rage now because it makes my choices so much more. 12 years ago, it wasn't like this at all.

Edited to add: My son is actually my step son. I was never able to carry a pregnancy with ten miscarriages.