Just came across this

[Galixie]

I just came across this article that seems to recommend less screening for celiac.

npr.org/sections/health-sho...

The thing is, I wouldn't have been screened at all if I didn't have a B12 deficiency and, even after I was screened and it came back inconclusive (high gliadin IgA but negative TTG), I still had no reason to mentally connect the dots between gluten and dizzy spells. It wasn't until I tried going off of gluten and then adding it back in several months later that it became apparent that I have gluten ataxia. Until that point, I didn't realize I had any symptoms that could be related to gluten at all. (I actually never heard of gluten ataxia until I started looking into how gluten and dizzy spells could possibly be related.)

Screening only people who have symptoms would mean that I'd still be having dizzy spells. I would still have no idea what caused them. And I wouldn't know that I was potentially causing my brain irreversible harm every time I ate a sandwich.

From one standpoint, the symptoms of celiac are so widespread that the screening net would basically be everyone. From another standpoint only a very narrow group of people who meet all the textbook criteria when they walk into a doctor's office need to be screened. Isn't there a happy middle somewhere?

[Rosie11011]

This article is from the U.S., and these guidelines won't necessarily be followed in the U.K.

[Galixie in reply to Rosie11011]

I know that but I am from the US and I'm probably not the only US person who looks at this forum.

[dede7]

Yes I had horrible dizziness the other day while eating Greek yogurt fruit and oats

[Penel]

Diagnosis can be a real problem. I have read that it's not uncommon to take up to 13 years to get a diagnosis. There are people on this site with similar experiences of being diagnosed almost by accident and often in the face of denials from medical professionals, because they didn't present with the 'classic' symptoms. I don't know how you get round it except by increased awareness among professionals and the general public.

[Galixie in reply to Penel]

I agree and I think that the imbedded flaw in the panel's recommendations has to do with patients presenting with symptoms before being tested. First there has to be awareness of what the symptoms are, then the patient has to know that they are having those symptoms in order to bring them up to the doctor. While it would be nice if everyone were aware of how broad ranging the symptoms can be, realistically the majority of people are not going to care enough to become well informed. So the hit and miss nature of diagnosis will likely continue.

[Jeaniep]

Yes I agree it can be just by accident that you get diagnosed, as I was, it was only because I moved house and changed doctor, the very first time I saw my new ( Greak) doctor he ask me when was the last time I had a blood test, I really couldn't say, so he took a blood sample, then the next week I was sent to hospital for a endoscopy ( not sure if that's spelt right)!😕

week later I was told I had CD this was nearly 20yrs ago now and I and many people then had never heard of this, and my doctor said I had probably had it all my life,

I was always a poorly skinny child, one of 7 children and I was the only one with CD and dr's just didn't know about CD in those days. but I'm so glad for other people now who have this condition, that a lot more doctors are much more aware of CD these days... or I like to think they are.

🙌