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University of Maryland Celiac Disease Prevalence Study for the USA - Progress Report - January 31, 1999

We have tested 1,579 samples as part of the Multicenter Serological Study for the prevalence of celiac disease in the United States. Our preliminary findings indicate a 5.8% positive finding of first degree relatives and a 3.2% positive finding of second degree

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relatives of celiacs. These findings are in the same range as were found in most of the European studies done in previous years. As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. The six (6) regional centers have begun minimal screening of study participants. Now we need the necessary dollars to put the study into full operation. Blood testing, supplies, and shipping charges will increase significantly in direct proportion to the samples processed.

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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

So I've been gluten free for 6 months. I gave it up the day of my endoscopy and never looked back. I was a fairly silent Celiac. My blood work was always normal (never anemic, malnourished), I didn't have all the horrible symptoms that others do. I think I caught it early and that those things were definitely coming. Since going gluten-free I notice that my belly is better. I still have days where it's not great, but in the last month I've noticed that it's consistently pretty good. I don't hardly ever get stomach aches. I've lost 16 lbs and I'm never bloated. Those things are good. But, aside from that, I don't feel much different than I did before. I'm still tired a lot. But I have two kids under 4 and I run a non-profit. I have horrible anxiety and that's only increased since finding out about my Celiac (it's health anxiety and it freaked me out big time that I have an AI disorder). I feel like my complexion looks the same (never had an issue with that). I just read stories on here that talk about how the brain fog lifted quickly, or how people don't feel tired anymore, etc. I'm still a zombie sometimes. Has anyone else has this experience? Maybe my body was doing such a good job compensating for my Celiac that I wasn't really very symptomatic to begin with - and that the tiredness I feel isn't due to gluten. Oh, FYI, I had a full thyroid panel done in December and it was all normal.

Your daughter could have non celiac gluten sensitivity. That would correspond to negative celiac tests coupled with positive reaction to the gluten free diet. Whilst there are similarities to celiac presentation it appears that neuro symptoms are more common in ncgs patients. That seems to be the case for me anyway! The condition is as yet poorly understood but there is progress being made, check out a topic I just started on the pre diagnosis thread with some info and links. The remarks by umberto Volta in particular are just about the best summation I've yet seen on where the research is at. I will post a link later.

The gi may be able to see some signs of celiac visually but the chances are you will have to wait a couple of weeks for the biopsies before there's any confirmation. The damage to the villi is too small to detect with naked eye I think. as long as your eating some gluten each day you will have done all you can for a diagnosis. Not long now so go ahead and treat yourself to a nice cheesecake, fish and chips etc.

check out CoQ10, not related to celiac (as far as I know) but for balance issues.

remind your hubby, "if mama ain't happy, ain't nobody gonna be happy."