What Is The Role Of The Nih In Educating The Public About Gluten Intolerance ?

[marciab]

I'm confused. I learned about Celiac disease in August 2005 from the NIH website on Celiac Disease, but I haven't seen any more information released from there since June 2004. According to their website, updating the public and the medical community is their job. We all know what bird flu is, why doesn't the medical profession know what celiac disease is ? Check it out at www.digestive.niddk.nih.gov/ddiseases/pubs/celiac ....

ps. They don't list your website as a source of info, but I have found you to be invaluable. THANK YOU

[Canadian Karen]

Well, being Canadian, I can't really comment on the NIH, but I can say welcome to the board and I am glad you found us! Celiac.com is quickly becoming "the place to go to" to properly learn about this disease and how to cope. There are people here who are extremely knowledgeable and helpful.

Welcome aboard!

Karen

[marciab]

Thanks. I'm really happy that I found this website. I don't feel so alone anymore. I love the way the message boards are set up. Although, I don't quite understand the technical info yet, it's good to know we have such informed people on staff.

I always thought that the NIH was the gold standard for health care in the US. I emailed them at the website listed on their web page 2 weeks ago and asked them how they had updated the public and the medical profession about celiac disease, but I haven't heard back from them yet.

I'm just amazed at how poorly the info about celiac is being related. I've been having horrible stomach cramps for over 2 years now. I was even hospitalized 11/2005 for 3 days for stomach related chest pain, but still haven't been tested for celiac. I was however tested for every heart related problem known to man !!!! My gastroenterologist is a moron. He did an endoscopy in May 2004 and a colonoscopy in August 2004, but didn't look for celiac. As a matter of fact, he never said a word about food being the problem. Just prescribed an assortment of meds, of which none of them worked, except in my medical records.

I don't understand why the NIH study on Celiac Disease isn't being acknowledged by the medical profession. Who does the medical profession look to for up to date info ? I noticed that the drug companies seem to get their medications into every doctors office. I guess we'll have to wait for some drug company to come up with a pill they can prescribe before doctors will listen.

[Canadian Karen]

I have a rather sinister theory about that actually.

I think that the drug companies have absolutely no interest whatsoever in researching celiac disease. After all, the treatment for it is diet change, not a pill. There's nothing in it for them. In fact, the opposite is true. If celiac disease becomes well known and properly diagnosed, there would be many more people who don't get to the point where they develop osteoporosis, diabetes, thyroid problems, chronic gastro complications, etc. All of these require medicine to manage - they make their money that way.....

Just my theory......

Karen

[tarnalberry]

it's just not high enough on the priority list for them, so they spend most of their time on their higher profile campaigns, like the bird flu, breast cancer, and aids. part of that priority is politics too - celiac disease isn't a terribly media-friendly condition. but the NIH doesn't really set standards of care any more than the various medical organizations do - they do a lot of education, and they do a lot of grant giving, and they act as an organizing force - hence the celiac conference they had in 2004. (you can find that on NIH's site.)

not saying this is a *good* reason, of course.

[Felidae]

I have a rather sinister theory about that actually.

I think that the drug companies have absolutely no interest whatsoever in researching celiac disease. After all, the treatment for it is diet change, not a pill. There's nothing in it for them. In fact, the opposite is true. If celiac disease becomes well known and properly diagnosed, there would be many more people who don't get to the point where they develop osteoporosis, diabetes, thyroid problems, chronic gastro complications, etc. All of these require medicine to manage - they make their money that way.....

I agree 100%.

[marciab]

I'm obviuosly just nieve when it comes to how the real world works. I thought a government organization was there to serve the public. You know, the whole "by the people, for the people" Democracy nonsense we learned in school.

I see what you mean about this not being a media friendly disease. But, don't you think someone other than special interest groups, like us, has to get the word out.

[ianm]

The word is getting out. Look at how many people belong to this forum now. I think people are finally beginning to wake up to the fact that taking 20 pills a day is not the key to good health. Drug companies are not making the money they used to and hopefully we are a big part of the reason why.

[lonewolf]

I was even hospitalized 11/2005 for 3 days for stomach related chest pain, but still haven't been tested for celiac. I was however tested for every heart related problem known to man !!!! .

I know that this isn't what your post is all about, but found this interesting. I had a similar thing happen to me about 3 years ago - was kept in the hospital for testing, even though I knew my heart was fine. When I asked if it could be related to my diet, thyroid problems or something they acted like I was insane. (I already was avoiding wheat, but not all gluten.) I didn't know about celiac or gluten intolerance back then, but looking back am sure it was all connected.

Liz

[CeliaCruz]

I think that the drug companies have absolutely no interest whatsoever in researching celiac disease. After all, the treatment for it is diet change, not a pill. There's nothing in it for them.

Perhaps, But if a pharmaceutical company were to come up with a pill that would make it possible for Celiacs to eat gluten without damaging their intestines (or at least eat something that was cross contaminated etc.) they would make a fortune. I know I'd take it. Celiac is a lifelong disease and if one 1 of every 133 in the US had to take a pill everyday for the rest of their lives, whoever made that pill would be raking it in. I don't think we're being ignored because we're untreatable. I think we're just an as yet untapped market.

The word is getting out. Look at how many people belong to this forum now. I think people are finally beginning to wake up to the fact that taking 20 pills a day is not the key to good health. Drug companies are not making the money they used to and hopefully we are a big part of the reason why.

What information are you basing this conclusion on? First off, Pharmaceutical companies are making more money than ever before, thanks to Viagra, SSRI's and the fact that the US government won't let Canadian drug companies import cheaper drugs into the US. I'd love to think that we're bringing "the man" down but unfortunately 8,000 or so Celiacs with internet access aren't exactly making Novartis, Squibb et al lose any sleep. Secondly, the gluten-free diet has helped me greatly, but I still have to purchase lots of pharmaceuticals to deal with residual symptoms. As of this week, I am taking Lexapro for depression, various ointments/creams/antibiotics for celiac-related skin problems that aren't responding to my diet, and a variety of OTCs like Maalox, Xantac and Ibuprofen. And from what I can gather from the posts I've read on this board, I'm the rule, not the exception.

[ianm]

There is a very large drug company in the city I live in and just about everyday there is an article in the local paper about jobs cuts and decreasing profits in the drug industry. This company is the largest private employer in the city so it is a real big deal here.

[marciab]

I appreciate all the response on this topic. I can definitely see where the drug companies have nothing to gain at this point by educating the public about this illness. But, I am on medicare so the government is paying for all of my medical tests, hospitalizations, doctors and drugs. I'm assuming that the doctors working at the NIH would know as much about this illness and it's complications as we do, so what gives ? Maybe, it's not the NIH I should be looking to.

And as far as educating the public about celiac disease, the only reason I found out about it was because I was searching the web for Wheat free bread recipes and kept running into the word "gluten". Most people have no idea what gluten is or the effects it can have on a person's health.