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KevinG

Who Are The Top Celiac Researchers?

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Who are the most prominent celiac disease researchers? I have a complex medical situation, and would like to see a doctor who is at the forefront of research in this field.

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KevinG,

I'm in my first year of knowing I have Celiac Disease, so I have a lot to learn and yet I've also done LOTS OF READING on PubMed and Medline. So maybe I can help a bit?

Because I'm getting tired, I'm basically going to throw some info in your direction and leave you to dig through it :blink: ...which is really what you'll have to do anyways. So here is a document (copied and pasted from my computer) that I wrote and printed for my DOCTOR. It's here, unedited. Hope this is a good starting ground for you. And if you'd like (and if not that's perfectly fine too) to explain a tad more about what you're looking for specifically I may be able to help.

This website has what you, as a doctor, will want to see first. It is easy to read and very thorough.

http://sites.google.com/site/jccglutenfree/glutenataxia LOOK HERE FIRST!

www.theglutenfile.com

PubMED (our good friend) Search for

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By the way, I should add that a good chunk of my own investigating has revolved around the topic of gluten ataxia, so if you see that what I sent mentions that a lot, that would be why. Never the less, Dr. Hadjivassiliou is one of the world leaders at this time in Celiac Disease research.

Sadly, while there is some outstanding research being done in the UK, some in Ireland, and a smidge in Australia as well (sometimes Canada too), it seems to me that most of the good and relevant medical information hasn't made it's way to the United States yet and certainly hasn't impacted "traditional medicine" at this point for the better. I don't know where you live, KevinG.

But if you live in the USA, I'd say try to get in contact with

1) A celiac disease support group! http://www.csaceliacs.org/ - Beyond just getting info, you get to know REAL PEOPLE who are dealing with difficulties too, and you can share stories, find laughs, and find new ways to cope...and generally be exposed to new ideas and theories about celiac disease, nutrition, and treatment/diet that you might not even have access to online. Local is awesome!

2) A lively online celiac disease community like this one and the community at MDJunction.com

3) A natural-minded Gastroenterologist (sp?) and other specialist doctors you may need to see. You may need to ditch the old ones and start fresh if you're having odd celiac-related problems that "traditional medicine" isn't helping solve. For this one, going back to contact #1 has been INVALUABLE to me! My friends at the support group have helped me find doctors that wouldn't treat me like I have 1,827 heads because of all my strange symptoms.

4) Contacts in the "natural health" area. Right now I'm trying to find a naturopath or someone who knows about natural medicine and can help me understand more about what's going on with my health than my docs can do. I personally believe there are answers out there to be had without medications and pharmaceuticals (many of which have gluten anyways), so I am trying to find out how I can use good foods and natural products to get my body healthy again. Having the support of an online community, access to research, local involvement in a CSA group, and other networking connections makes all the difference in the world! So see if a Naturopath might be an option or helpful to you.

This one looks interesting to me because of the article they posted here:

http://www.denvernaturopathic.com/news/celiac.html

I plan to write a letter to them myself regarding some of my own health issues related to celiac disease.

Finally, use research tools such as PubMed and Medline. Many medical journal articles can be found for free and help you understand your health. The most important parts, if you don't have a medical background and find reading that stuff daunting (I can't blame you - it's sometimes daunting to me and I DO have a medical background!), will be in the introduction or (oh, I'm having brain fog and forgetting the word - it begins with an "s" and it means an abbreviated description of something....you probably know what I mean, sorry!) and then the conclusion of the research findings that typically break it down into a more real-life suggestion for medical practice.

Do be aware that not all studies are EQUAL in QUALITY. I've read some where I can say for sure that the research methods were very poor and the conclusion seemed to have little to do with the actual findings of the research without extreme extrapolation. Just be cautious.

Hadjivassiliou I do recommend without reservation, however. He's done an excellent job!

Good luck and let me know how it goes. Send me an email through the forum here and I'll try to respond. I'm happy to help if I can.

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Hey Lisa, that's a great website! Thanks for sharing!! :D

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Thanks so much for the detailed reply, FeelingAlone! I just saw it now. Will check out those resources and Dr. H.

By the way, I should add that a good chunk of my own investigating has revolved around the topic of gluten ataxia, so if you see that what I sent mentions that a lot, that would be why. Never the less, Dr. Hadjivassiliou is one of the world leaders at this time in Celiac Disease research.

Sadly, while there is some outstanding research being done in the UK, some in Ireland, and a smidge in Australia as well (sometimes Canada too), it seems to me that most of the good and relevant medical information hasn't made it's way to the United States yet and certainly hasn't impacted "traditional medicine" at this point for the better. I don't know where you live, KevinG.

But if you live in the USA, I'd say try to get in contact with

1) A celiac disease support group! http://www.csaceliacs.org/ - Beyond just getting info, you get to know REAL PEOPLE who are dealing with difficulties too, and you can share stories, find laughs, and find new ways to cope...and generally be exposed to new ideas and theories about celiac disease, nutrition, and treatment/diet that you might not even have access to online. Local is awesome!

2) A lively online celiac disease community like this one and the community at MDJunction.com

3) A natural-minded Gastroenterologist (sp?) and other specialist doctors you may need to see. You may need to ditch the old ones and start fresh if you're having odd celiac-related problems that "traditional medicine" isn't helping solve. For this one, going back to contact #1 has been INVALUABLE to me! My friends at the support group have helped me find doctors that wouldn't treat me like I have 1,827 heads because of all my strange symptoms.

4) Contacts in the "natural health" area. Right now I'm trying to find a naturopath or someone who knows about natural medicine and can help me understand more about what's going on with my health than my docs can do. I personally believe there are answers out there to be had without medications and pharmaceuticals (many of which have gluten anyways), so I am trying to find out how I can use good foods and natural products to get my body healthy again. Having the support of an online community, access to research, local involvement in a CSA group, and other networking connections makes all the difference in the world! So see if a Naturopath might be an option or helpful to you.

This one looks interesting to me because of the article they posted here:

http://www.denvernaturopathic.com/news/celiac.html

I plan to write a letter to them myself regarding some of my own health issues related to celiac disease.

Finally, use research tools such as PubMed and Medline. Many medical journal articles can be found for free and help you understand your health. The most important parts, if you don't have a medical background and find reading that stuff daunting (I can't blame you - it's sometimes daunting to me and I DO have a medical background!), will be in the introduction or (oh, I'm having brain fog and forgetting the word - it begins with an "s" and it means an abbreviated description of something....you probably know what I mean, sorry!) and then the conclusion of the research findings that typically break it down into a more real-life suggestion for medical practice.

Do be aware that not all studies are EQUAL in QUALITY. I've read some where I can say for sure that the research methods were very poor and the conclusion seemed to have little to do with the actual findings of the research without extreme extrapolation. Just be cautious.

Hadjivassiliou I do recommend without reservation, however. He's done an excellent job!

Good luck and let me know how it goes. Send me an email through the forum here and I'll try to respond. I'm happy to help if I can.

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