dutch research celiac - crohn CU

harma · Post by **harma** » Tue Mar 09, 2010 12:14 pm

In the magazine of the Dutch Celiac Foundation also an article about the research they want to do on the relationship between celiac and IBD. The idea is great of course, only IBD includes of course Crohn's disease and Colitis Ulcerosa (I am using the Dutch term, I know in English it is a bit different). Of course no MC. I just don't get it. Other research already has shown a relationship between MC and Celiac in the sense MC appears significant more in a population of only Celiac patients than in any other random group.

I will send an email to this foundation and suggest them also to include MC in this research and point out tothem the scientific research that has been written about this relation. Who knows maybe it will help.

But just I don't get it, I just don't get it...

JLH · Post by **JLH** » Tue Mar 09, 2010 12:44 pm

Good luck with that.

harma · Post by **harma** » Tue Mar 09, 2010 1:46 pm

I just did, googled some scientific evidence and added that to my email, let's just wait and see.

Post by **tex** » Tue Mar 09, 2010 1:49 pm

Harma,

Remember that if they are going by the information that is available at the major medical institutions, most of that information is obsolete, and they still consider MC to be a rare disease. MC is not rare, of course, but that is beside the point, if they don't know that. Crohn's and UC, by contrast, are not listed as rare diseases. That's why most people either overlook MC, or they are not even aware of it, in the first place. The major medical institutions continue to spread misinformation about MC, and as long as they do, MC will continue to be thought of as a rare disease.

Tex

JMulkey · Post by **JMulkey** » Tue Mar 09, 2010 3:18 pm

I really like that my gastro is honest enough to tell me that it's become more prevalent and that the medical community really doesn't know much about it. So at least he's being honest.

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 09, 2010 3:35 pm

i suppose now they have to be honest as the information is very accessible

it is the professionals that feel 'threatened' about patients doing their own research

back in the late 90's, was seeing a Gyno specialist and he got upset that i had done my own research. at one stage he actually said 'dont you trust me' and i replied something to the effect that it is not that I trust or dont trust anyone, moreso it is my body and i think i have the right to research and fully understand what is going on

this was before internet, at the time i was doing admin type work at a hospital and had access to the hospital library and all the medical journals.

he asked me where i obtained my information, i told him, at that stage I dont think he had had many patients that would do their own research.

angy · Post by **angy** » Tue Mar 09, 2010 3:48 pm

I have to agree with tex....when I was diagnosed with cc my gi doc told me it was classed as a rare disease and that there was not enough research done regarding this form of colitis...he also said that cc was a form of the ulcerative colitis and crohns disease family but not as life threatning as the latter...I have been researching cc for ages and yet after 2years of diagnosis there has still not been any additional research done in uk...however today I came across this leaflet in a supermarket.

It reads "Do you have an autoimmune disease? Have you heard of LDN REsearch trust? apparently they are committed to trials of LDN as a treatment for autoimmune disease....I'm in the process of checking this out will keep you posted....

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 09, 2010 3:52 pm

as tex stated in a post in another thread. if they do research now, the knowledge and benefits of that research will not be realised for many many years.....