Finding A Doctor Who Really Knows Celiac

[Gentleheart]

I'm sure there are some great ones out there. But how do you find a really knowledgeable celiac doctor who is up on all the latest research, within your own state or in a certain mile radius? I have so many physical complications probably due to my newly stool-diagnosed celiac, that I really think I need some serious help. It's obvious to me after spending some time here, that many people on this message board know more than a lot of doctors about the subject of celiac. I realize it takes research and study and no doctor has time to know everything about everything. So where are the ones who DO know what we know?

[floridanative]

I think there are five Celiac research centers in the US. Many US cities and towns do not have one doctor that know as much as most of us do about Celiac disease. I wish I had better news for you but that's just the way it is. What I'd suggest is joining a local Celiac support group (if you're lucky enough to have one in your area) and ask them who they see. That's how I found someone who knew almost as much as I do about Celiac. Good luck!

[Guest nini]

finding a local support group is a really good idea, if you post what part of the world you are in, I'm sure you will find that there are others on here that are possibly near you and can point you in the right direction

or you can go to CSA Celiacs Website I think it is csaceliacs.org and look up local support groups...

also, I've found that I have better luck with my Family Dr. than with a GI... the Family Dr. can monitor your health, and perform needed ongoing tests, and since you are in charge of keeping you gluten-free, you don't have to rely on a GI to tell you what to eat... most of them don't have a clue anyway other than to tell you to avoid the obvious... you can learn more about the diet from other Celiacs (this site especially) than you can from any Dr. or Nutritionist, and a Family Dr. can adequately monitor your other health issues or refer you to specialists that can... and don't let ANY of them try to talk you out of being gluten-free... some may try to adhere to the OLD outdated "gold standards" of diagnosis and aren't willing to accept stool diagnosis... which IS very valid and more accurate than the other tests.

[barbara3675]

Some time ago, I started a thread like this and got little response. I thought it would get a bigger one. It would be very interesting to know just how to find a good doctor that REALLY knows somthing about this, but truely I think the people on this board know more about celiac and gluten intolerance and most doctors do.

[Gentleheart]

  nini said:

finding a local support group is a really good idea, if you post what part of the world you are in, I'm sure you will find that there are others on here that are possibly near you and can point you in the right direction

or you can go to CSA Celiacs Website I think it is csaceliacs.org and look up local support groups...

also, I've found that I have better luck with my Family Dr. than with a GI... the Family Dr. can monitor your health, and perform needed ongoing tests, and since you are in charge of keeping you gluten-free, you don't have to rely on a GI to tell you what to eat... most of them don't have a clue anyway other than to tell you to avoid the obvious... you can learn more about the diet from other Celiacs (this site especially) than you can from any Dr. or Nutritionist, and a Family Dr. can adequately monitor your other health issues or refer you to specialists that can... and don't let ANY of them try to talk you out of being gluten-free... some may try to adhere to the OLD outdated "gold standards" of diagnosis and aren't willing to accept stool diagnosis... which IS very valid and more accurate than the other tests.

I'm in Iowa. Any Iowans out there??

[Rachel--24]

I know of good doctors here in CA. Sorry dont know about Iowa. I had alot of doctors who knew nothing about Celiac....I had already done lots of research and been on this board awhile and could easily tell that these doctors were clueless. I never thought I'd find a doctor more knowledgeable than I was but by chance I did....I found a doctor who I could listen to, learn from and get help from. It might take some time to weed the bad doctors out but you just might get lucky and find a good one along the way.

[Guest nini]

CSA Local Units: Iowa CSA Waverly Chapter #03 Betty Bast, Waverly

319-352-4740, rbbast@webiowaplus.net

Kim Ovel, New Hampton

641-394-2379, dkjk@iowatelecom.net

CSA Quad City Celiac Group #79 Becky Wentworth, Davenport

563-391-2968, wentworth@netexpress.net

CSA Des Moines Area Chapter #114 Barb Huyette, Des Moines

515-224-4145

Lindsay Amadeo, Des Moines

515-274-3874, llamadeo@yahoo.com

CSA Resource Unit # 2066 Anna Mary Cobie, Waterloo

319-235-7952, annamary@pitnet.net

Kristi Simmerman, Waterloo

319-234-2104, simmerman@bigfoot.com

CSA River City Celiacs #122 Laurie Monical, Keokuk

319-524-5390, lmonical@interlinklc.net

[Gentleheart]

  nini said:

CSA Local Units: Iowa CSA Waverly Chapter #03 Betty Bast, Waverly

319-352-4740, rbbast@webiowaplus.net

Kim Ovel, New Hampton

641-394-2379, dkjk@iowatelecom.net

CSA Quad City Celiac Group #79 Becky Wentworth, Davenport

563-391-2968, wentworth@netexpress.net

CSA Des Moines Area Chapter #114 Barb Huyette, Des Moines

515-224-4145

Lindsay Amadeo, Des Moines

515-274-3874, llamadeo@yahoo.com

CSA Resource Unit # 2066 Anna Mary Cobie, Waterloo

319-235-7952, annamary@pitnet.net

Kristi Simmerman, Waterloo

319-234-2104, simmerman@bigfoot.com

CSA River City Celiacs #122 Laurie Monical, Keokuk

319-524-5390, lmonical@interlinklc.net

Thanks!

[glutenfreeme]

  Rachel--24 said:

I know of good doctors here in CA. Sorry dont know about Iowa. I had alot of doctors who knew nothing about Celiac....I had already done lots of research and been on this board awhile and could easily tell that these doctors were clueless. I never thought I'd find a doctor more knowledgeable than I was but by chance I did....I found a doctor who I could listen to, learn from and get help from. It might take some time to weed the bad doctors out but you just might get lucky and find a good one along the way.

Hi Rachel.

I live in the East Bay, Lafayette CA to be specific. I am having trouble finding a primary who is aware of Celiac Disease and other auto-immune disorders. I am seeking this and a dietician who might be on the ball with gluten free diet and lifestyle. Any suggestions? Thank you, Heather

[tiredofdoctors]

I found the most incredible GI doctor from the oddest place -- my EYE doctor! He is very well-connected, as is his wife, with "who is good, who is not" in the medical world. If you have ANY MD's that you like or trust, or for that matter, nurses, PA's -- people who are "in the know" . . . . start asking around.

If you know anyone who is an adjuster for an insurance company -- especially one that does workers' compensation -- they know a LOT about who's who . . . . sometimes not necessarily for GI docs, but for really thorough primary care physicians. Also, they're in touch with nurse case managers. They have the inside scoop on a TON of different specialties!

I agree with finding your local support group. It took mine 8 months to respond to my repeated e-mails just to find out when the meetings were held! Not so good . . . .

Oddly, if you know any ER nurses or docs, they know REALLY good GI docs!

If you're looking for someone who specializes in autoimmune diseases, it's kind of questionable. Each person seems to know their "specialty" . . . My endocrinologist, thankfully, knows about other autoimmune diseases, and is also open to HEARING (not just listening) to what my other docs have found out. Same with my neurologist(s). Rheumatologists seem to know about only rheumatological issues (one rheumy I went to knew NOTHING except rheumatoid, ankylosing spondylitis, etc. -- come to find out, he's the one that told my SIL for two years that she was "stressed" -- she had polymyositis, and subsequently passed away from it). If you go to an IMMUNOLOGIST, you will usually find them under "Allergy and Immunology". That's when you need to do some SIGNIFICANT questioning! Ask them if they specialize in IMMUNOLOGY -- not just allergy. Ask them if they are familiar with autoimmune disease processes. Most will have been so used to doing scratch tests and prescribing vials of serum that they will NOT be in the immunology game. Don't be afraid to ask. It's a consumer's market. If you stumble across a really good immunologist, you may be able to get somewhere with that. I have been lucky that my MD's will do all the tests that I have found on this forum!! My neuro says, "Now you want HLA DQ What???" then writes it down!!

If I think of any other ways to find a good doc, I'll post it! I can say, "I wish you luck . . . . . "

Hugs,

Lynne

[glutenfreeme]

  tiredofdoctors!!! said:

I found the most incredible GI doctor from the oddest place -- my EYE doctor! He is very well-connected, as is his wife, with "who is good, who is not" in the medical world. If you have ANY MD's that you like or trust, or for that matter, nurses, PA's -- people who are "in the know" . . . . start asking around.

If you know anyone who is an adjuster for an insurance company -- especially one that does workers' compensation -- they know a LOT about who's who . . . . sometimes not necessarily for GI docs, but for really thorough primary care physicians. Also, they're in touch with nurse case managers. They have the inside scoop on a TON of different specialties!

I agree with finding your local support group. It took mine 8 months to respond to my repeated e-mails just to find out when the meetings were held! Not so good . . . .

Oddly, if you know any ER nurses or docs, they know REALLY good GI docs!

If you're looking for someone who specializes in autoimmune diseases, it's kind of questionable. Each person seems to know their "specialty" . . . My endocrinologist, thankfully, knows about other autoimmune diseases, and is also open to HEARING (not just listening) to what my other docs have found out. Same with my neurologist(s). Rheumatologists seem to know about only rheumatological issues (one rheumy I went to knew NOTHING except rheumatoid, ankylosing spondylitis, etc. -- come to find out, he's the one that told my SIL for two years that she was "stressed" -- she had polymyositis, and subsequently passed away from it). If you go to an IMMUNOLOGIST, you will usually find them under "Allergy and Immunology". That's when you need to do some SIGNIFICANT questioning! Ask them if they specialize in IMMUNOLOGY -- not just allergy. Ask them if they are familiar with autoimmune disease processes. Most will have been so used to doing scratch tests and prescribing vials of serum that they will NOT be in the immunology game. Don't be afraid to ask. It's a consumer's market. If you stumble across a really good immunologist, you may be able to get somewhere with that. I have been lucky that my MD's will do all the tests that I have found on this forum!! My neuro says, "Now you want HLA DQ What???" then writes it down!!

If I think of any other ways to find a good doc, I'll post it! I can say, "I wish you luck . . . . . "

Hugs,

Lynne

Thank you Lynne! I will get to work on asking around. It doesn't seem like Celiac Disease is known well to the med. community at large so I will dig deeper. I really appreciate your fast repy b/c I suspect at least one of my kids( ages 6 and 3) have this too and they are getting bloodwork in the coming weeks. If I find a great primary I'll certainly let you know.

Heather

[MistressIsis]

I've worked in a biomedical device company for he last few years dealing with Doc offices. Be persistant!!

Part of our company is in Germany & in May I was with a group of them, turns out Celiac & gluten Intolerance etc is widely known there as well as a few other countries. They sent me papers re: American Docs that have had any training overseas typically are more aware of the disease. Also Docs from other countries that come here.

You can usually get a docs background if asked.

I changed OB/GYN's and he's the 1 that figured it out!

[chgomom]

Here is anothe rset of docs in Iowa....

Quite honestly...if you can go to a University you're better off....

University of Iowa Foundation for Celiac Disease Research

University of Iowa Hospitals and Clinics

200 Hawkins Drive

Iowa City, IA 52242

More specifically,

Celiac Disease Clinic at the Univeristy of Iowa

The Celiac Disease Clinic provides diagnostic and consultation services to patients with a known or suspected intolerance to grain products or other types of malabsorption syndromes.

David E. Elliott, MD

F. Jeffrey Field, MD

[Robina]

Traditional doctors are trained to medicate symptoms... not to actually find and treat the root cause... and since celiac's is a disease treated with dietary and usage restrictions... it is out of western medicine's league IMHO...

Learn from my mistakes and go find a good/reputable naturopathic doctor... same credibility and authority as a regular MD (with respect to prescriptions and tests) but with the holistic training as opposed to pharmacology training...

[Robina]

  Robina said:

Traditional doctors are trained to medicate symptoms... not to actually find and treat the root cause... and since celiac's is a disease treated with dietary and usage restrictions... it is out of western medicine's league IMHO...

Learn from my mistakes and go find a good/reputable naturopathic doctor... same credibility and authority as a regular MD (with respect to prescriptions and tests) but with the holistic training as opposed to pharmacology training...

p.s. I forgot to mention that a good naturopathic doctor will be familiar with Celiac's as well as other digestive disorders because that's mainly how they treat... through nutrition...

[ylimaf]

Be very careful going to Albuquerque NM. The doctors claim to know about celiac disease but they really know very little. Some docs still refer to it as an allergy. The best you can do is offer a book most recently written by a doctor who specializes with celiac disease to your doctor and see if they read it.

[Nic]

Here in Jersey it seems that the Ped. GI doctors and Morristown Hospital seem to know what they are doing. We loved our original GI, he was warm, caring, and very interested in helping my son. But it seems as though he wasn't able to care for him well enough. For example, when my son was given the blood test the doctor called and said it looks like Celiac, his antibody levels are through the roof. He set up a biopsy for the next week. After the procedure he told me to start him on the gluten-free diet as he is sure it is Celiac. Well, biopsy came back negative. He said he was shocked but go ahead and give him gluten again, it obviously isn't Celiac. Can you imagine? Even if it wasn't, he is obviously showing a reaction to it. Very frustrating. But, Morristown seems more knowledgeable.

Nicole

[Vivi-mateo]

  On 7/5/2006 at 10:40 PM, Rachel--24 said:

I know of good doctors here in CA. Sorry dont know about Iowa. I had alot of doctors who knew nothing about Celiac....I had already done lots of research and been on this board awhile and could easily tell that these doctors were clueless. I never thought I'd find a doctor more knowledgeable than I was but by chance I did....I found a doctor who I could listen to, learn from and get help from. It might take some time to weed the bad doctors out but you just might get lucky and find a good one along the way.

Expand Quote  

Hey rachel

I live in los angeles ca and i am wondering if you can reccommend any doctors here since you know some in ca. I would really appreciate your help, i definitely need some guidance and i have a 6 month old son that i want to get better for. Most doctors just keep telling me that nothing is wrong and they wont run deeper blood test but i know something os wrong. For the past 6 months ive had constant vomiting and diarrhea fatigue migraines and black outs. This cannot be normal. One of ky brothers friends has celiac disease and she advised me to check it out because i have all the symptoms. She also said she suffered for 10 years before a doctor found it but he is in florida. Any of your help and advice would help alot.

Thank you

Vivian

[cyclinglady]

  On 6/2/2018 at 12:20 AM, Vivi-mateo said:

Hey rachel

I live in los angeles ca and i am wondering if you can reccommend any doctors here since you know some in ca. I would really appreciate your help, i definitely need some guidance and i have a 6 month old son that i want to get better for. Most doctors just keep telling me that nothing is wrong and they wont run deeper blood test but i know something os wrong. For the past 6 months ive had constant vomiting and diarrhea fatigue migraines and black outs. This cannot be normal. One of ky brothers friends has celiac disease and she advised me to check it out because i have all the symptoms. She also said she suffered for 10 years before a doctor found it but he is in florida. Any of your help and advice would help alot.

Thank you

Vivian

Expand Quote  

Vivian,

Any primary care physician can order a celiac blood panel.  If yours will not, time to find a new doctor!  UCLA and UC San Diego both have celiac centers.

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