cassP

I think the 1% number is closer to reality.

Data points: My primary care physician has ~2,000 patients across all ages. If the numbers are right, he should have about 20 celiacs currently. When we last discussed DH, he said I was his only patient with it in his 25 years of practice. My GI doc said she sees so few cases that it's an automatic dermatology referral from her, because she sees so little of it that she has no experience in its diagnosis and treatment.

I don't think they automatically do DNA testing in Italy.  I read and heard from Italians that they test kids under the age of 5 IF there is Celiac in the family or they have symptoms. Their medicine is no better than ours. It's also socialized medicine so testing is not done so routinely. I really don't think it matters where you are...doctors only ever look for cancer and if you don't have that, you'll have to figure out your problems on your own because they won't do it for you! Europe may be more savvy regarding Celiac but that doesn't mean the diagnosis rates are much better than in other parts of the world. Plus, there is just too much resistance from people when it comes to changing their diets a bit.

I am brand new to this forum and am afraid I'm going to ask something g that's been asked before, but...I'm desperate!!

I have had severe GI issues for years (constipation and nausea) I've been told it's severe IBS, which has been frustrating since nothing much can be done for IBS. In July 2008, I became so impacted that I had to have half of my colon removed. I drank 2 doses (2 gallons) of GoLYTELY and produced nothing.

Following the surgery, I was still in severe pain and was kept on a dilaudid drip through PICCADILLY line for 2 months. That caused complete Gastroparesis. Which led to detoxing from Dilaudid. Which led to other complications...argh. It turned out I had a horrible bacterial overgrowth in my small intestine.

Fast forward a year...the constipation returned with a vengeance. I was achy and fatigued all the time, to the point I was missing work. I developed a rash on my back and legs. I developed Raynaud's and mouth ulcers.  I had to use an enema i  order to have a BM. Things were getting really bad.

I was tested for celiac and blood tests came back negative, so I dismissed it. BUT...when my GI started talking about putting a pace maker into my gut, I got desperate and began a gluten-free diet. Two days later, the fatigue was greatly improved. Five days later, I had a BM without an enema. And then I had two the next day. I've had 2-3 a day since then. My stomach, it turns out, wasn't fat. It's flat, unlike it's distended state prior to gluten-free.

So...is it possible to  have Celiac and have a negative blood test? I remember my doctor saying "there are two tests. I'm going to do the better one on you." I've had lots of colonoscopies but never an endoscopy. HELP!

I was hoping you would post and clarify that as I think i have seen you mention it elsewhere.  It seems like this particular blogger either mis-read the book on GAPS or read a different one than you did.  She seemed really confused and seemed to be using the terms "gluten allergy" and celiac interchangablely.  I do hope she looks into it more instead of continuing to spread mis-information.

It seems odd that they would create a vaccine when its so easy to not use wheat and gluten, considering the diagnosis is on the rise every year, (its more than 1/100 people now!) why would they invent a drug to stop your body telling you that it really doesn't like what your giving it. I always say go with your instincts if your body is telling you something is wrong listen to it. I wouldn't take the vaccine.

No. I don't even have the DQ8 gene. I'm one of the 0.4% of Coeliacs who don't have either gene.

They'll probably come up with A DQ8 variant if the DQ2 vaccine is successful... but I suspect they won't bother for the very small minority that's leftover.... and that kind of sucks.

i just found an older test from january 2009 where my T3 total was 69. should be between 82 - 179.

any help is greatly appreciated.