I saw my GI doc yesterday, who at first didn't know much about celiac, but has been doing some research and educating himself. I give him some credit, he is now testing many more people for celiac after my mystery case! He mentioned 15 people last week he tested whereas before me he rarely tested anyone!!!


Anyhow, he gave me info on a guidline published by the World Gastroenterology Organisation.

http://www.omge.org/?globalguidelines

Click on the "Practice Guidelines" in the left menu bar, and then the Celiac link will be listed in the table to the right!

The Celiac Guidlines are available in several languages. There is even what they call "Graded evidence" that links to Meta-analyses, Systematic reviews, Practice guidelines, Clinical Trials, and other useful reading.

This should be considered a legitimate source for GI docs. Perhaps some information to print and take to those ones out there that still think Celiac is extermely rare, and that we don't actually have it!!!

That's really good. I have gotten to the point that I take information that I have printed from the internet (all valid research) and hand them to my doctors. They ask me if that's for them, and I say "yes". I highlight areas that I want them to read, and I point it out to them -- and have them read it while I'm there. At least, that way, for a small moment in time they're thinking about it! It's to the point that one of my neuro docs has gotten Peter Green's book! He has started testing for Celiac in his ataxia patients -- he has caught it early in two different ones, and they are much more functional than I am . . . one doesn't even have to walk with a walker! Thanks for the heads up . . . . Lynne

I have read several posts where people have referred to Green's book, and I was wondering what the title is. The only books I have read have been by Jax Peters Lowell.

It's called--"Celiac Disease--A Hidden Epidemic". It's by Peter H.R. Green, MD and Rory Jones.

Isn't it a shame that these doctors make millions and we have to provide them the correct info about celiac's!!!! Something doesn't seem right here...... Maybe they should pay us with a free visit for the great info we provide to them......I agree alot are brain dead when it comes to celiac's. Most of all this is really sad.......

mamaw

I do agree, but I do feel good that at least this doc is more aware now, and is now screening more people for Celiac then he used to. He has ALOT of patients, so the impact will be there!

I'll be curious when I see him again in August how many people he has had come up positive!

mamaw--You said a mouthful there! It's a darn shame

Finally, something to show my doc. I actually have collagenous colitis. My mother is celiac. In spite of many people with collagenous colitis responding to a gluten free diet, my doc insists that collagenous colitis is not related to celiac and that anti-diarrheal meds or steroids are the best treatment. This article clearly states that collagenous colitis is related to celiac disease.

How's this for scary...we all know the connection between various autoimmune disorders, particulary type one diabetes and celiac disease. My wonderful endocrinologist who I have had for twenty-five years looked quite puzzled last summer when I told him my GP had run the blood work for celiac because my iron was low, and that it came back positive so I was going for the endoscope. He asked if I had any "real" symptoms of gluten intolerance, like bloating, abdomonal pain, diarrhea. When I said no, he scoffed, "well, you do not have it then. It is a very rare condition, and if you have been feeling well, then it just doesn't make sense". HA! And this is a DIABETES specialist, who has never known the connection between celiac and diabetes!! (fifteen percent of all type ones also have celiac disease, or will). Unbelievable....
So, I visit him next month and will take him a copy of Dangerous Grains. WAKE UP, DOCS! AND ESPECIALLY ALL YOU SPECIALISTS!!