Yikes!

[Emme999]

The following information is from the website Open Original Shared Link - It's a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (celiac disease) in children.

I'm afraid you guys wont be too surprised by these findings:

- Regarding the diagnosis of celiac disease, only 16% of respondents chose the most appropriate first line serological screening test for celiac disease, which is the IgA-anti-human tissue transglutaminase antibody.

- It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained.

- An average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions.

- An area definitely in need to be better known is that of screening for family members of patients with celiac disease. "With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended."

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It's really sad to think that (with all of our medical troubles) we are the LUCKY ones. So many people out there are seeing uninformed doctors! Does anyone know what we can do to change this??

[celiac3270]

On a small scale, you can raise awareness, but that's only with individual doctors. The only large scale way to increase awareness is to create a drug that does something for celiacs (allow them to eat gluten, minimize effects of accidental ingestion, etc.)...if there's a drug--a way for the pharmeceutical industry to make money--soon-to-be-doctors will suddenly be learning a lot more about celiac disease in medical school and such...

[psawyer]

celiac3270, what you say is so sad. It sounds cynical at first, but unfortunately it is entirely true. Profits and the pharmaceutical companies really do drive health care, both in the US and here in Canada.

[stef-the-kicking-cuty]

Yeah, that's true. Not only in the US and Canada. All over the world. Obviously for some people it's all about the money. Just sad!

[celiac3270]

Yea...I was thinking that after I posted it, but it's an unfortunate truth... Dr. Green brought it up at a celiac conference he spoke at this year when asked why celiac disease isn't as well-known as it should be.

[Carriefaith]

Doctors are always trying to throw medicine at you $$ I was put on a bunch of different drugs to help me feel better, and I just quit taking them all because they actually made me feel worse!

It's really sad when you go into the clinic and everyone comes out with a prescription! You don't need an anti-biotic for the common cold or the flu!

[tarnalberry]

It's interesting that, on the other hand, a number of good orthopaedists DON'T drug you up for common problems. So there may be an exception to the rule, based on the fact that so many doctors who are decent with such issues (tendonitis, sore muscle, sprain/strains, etc.) really do only prescribe non-prescription modalities (ice, rest, heat, OTC anti-inflammatories (usually not prescription)).

This brings to mind, however, another factor - the patients. Have you ever gone into the doc with tendonitis, a sprain, or the like, only to hear "well, stay off it, and take some ibuprofen when it hurts". And then been disappointed and asked if there was anything else you could do for it? Not so much looking for a drug handout, but wanting something quicker? Think about all the patients in the world who are looking for the easy answer, and are disappointed when their doctor doesn't give them one. When you combine that with the fact that many doctors think the diet is nigh on impossible and a horrible burden, they may be reluctant to dissatisfy their clientelle. So, I would conclude, the patients do contribute to the problem as well. (Yes, you could argue that the pharmaceutical companies have biased the patients into expecting quick fixes, but I don't think that's the full answer.)

To me, this gets back to educating the doctors that the diet really isn't horrible, and that it's quite healthy and doable for the average person.

[mcalistorm]

The funny thing is that of all the doctors I went to, all of them, even the gastrio specialists, knew next to nothing about celiac disease, except for my orthopedic doctor. He was amazingly well informed about it. Go figure.

[mcle8232]

If coming from their patients, doctors need to be exposed to little digestable nuggets of information. It is tempting to slam them with papers and references, studies, etc... but they'll toss it all to the side and say "I'm too busy" (chances are).

So our local support group is going to meet on the 21st of June in matching t-shirts and celiac awareness bracelets and we are getting the evening news to cover it. The plan is to distribute 250 brochures to our area physicians.

I made up the brochure, it lists all of the common and atypical symptoms (including being "asymptomatic"), common misdiagnoses, and related disorders. It stresses on several levels that testing is important, and tells them how to test for it.

Email me if you would like a copy of the brochure in pdf format.

For a little added drama we are affixing little ziplock bags to our brochures. What will be in them? An ordinary slice of white bread. A circle will be drawn with a line through it on the outside of the bag with a black sharpie.

[mommida]

Megan,

Could you reconsider the crossed out circle for the skull and cross bones sign for poison?

Laura