[widget]

I have searched on this site but haven't found out how to find a doctor. I live near Gainesville, FL and I'm trying to find a GOOD doctor here - someone who specializes in celiac disease and associated problems, obviously. I have self-diagnosed after years and years - decades - (it all makes sense now!!!) of bloating, horrible stomach pain, extremely low platelets ("ITP" - no one could figure out the reason), depression, anemia, infertility, early menopause, skin rashes, constipation, headaches, etc. I've been gluten-free now for over a year and it has helped immensely but I do continue to have allergic reactions, as well, so now have gone dairy-free, in addition, and stay away from all processed foods. I feel like I've read everything there is to read - now I need HELP. I want to be tested for celiac disease, as well as food allergies, so I can eat more nutritionally sound, and make sure I am covering all the facets/areas that can be affected. I also have environmental allergies and asthma.
Thanks in advance for any suggestions! There is no support group here that I've been able to find.

[Lisa]

http://www.csaceliac....php?stateid=10

These people can offer suggestions for a doctors, or they can send you in the proper direction.

But, please know that if you want to be tested for celiac, you must remain on a full gluten diet.

This is a great place to learn, welcome.

[vickysmores]

Hi!!! I was born and raised in Gainesville and am here for the summer. I found out I was celiac in Chile and am still trying to find a good doctor here. I´m stillll trying BUT ones to avoid: Elizabeth Sanders, Chodosh, Libach. Also Shands SUCKS. They are a very prestigious hospital but I´ve never had a good doctor there. I´m not joking, I had to be hospitalized for a severe dairy allergy (before I found out about my celiac too) and because the doctors couldn´t figure out my problem, they assumed my mom had been poisoning me. I will keep you updated but maybe we can start a support group here!!!

[sylviaann]

widget, on May 6 2009, 06:34 PM, said:

I have searched on this site but haven't found out how to find a doctor. I live near Gainesville, FL and I'm trying to find a GOOD doctor here - someone who specializes in celiac disease and associated problems, obviously. I have self-diagnosed after years and years - decades - (it all makes sense now!!!) of bloating, horrible stomach pain, extremely low platelets ("ITP" - no one could figure out the reason), depression, anemia, infertility, early menopause, skin rashes, constipation, headaches, etc. I've been gluten-free now for over a year and it has helped immensely but I do continue to have allergic reactions, as well, so now have gone dairy-free, in addition, and stay away from all processed foods. I feel like I've read everything there is to read - now I need HELP. I want to be tested for celiac disease, as well as food allergies, so I can eat more nutritionally sound, and make sure I am covering all the facets/areas that can be affected. I also have environmental allergies and asthma.
Thanks in advance for any suggestions! There is no support group here that I've been able to find.

Hi there,

I love in Florida (Tampa area) and the only real Celiac Specialist is Dr. Cynthia Rudert in Atlanta. You would have to drive five hours to see her, but she is well worth the trip. She does not file insurance claims but if you have insurance with an out-of network option, you can file the claim on your own. If you have been gluten-free for a long time, she probably would not run a blood lab panel on you. I'm not sure what she would do....maybe biopsy you after a few visits/evaluation. I never tested positive for celiac but she knows I have definite symptoms of gluten sensitivity or celiac.
Hope this helps you,

Sylviaann

[widget]

Thanks, you guys, for the info - esp. who to avoid! I continue to search.....

[FMcGee]

I just saw this!! I live in Gainesville, and I see Dr. Burns at Digestive Disease Associates. He's a very nice guy, and don't let the fact that he still calls it "sprue" dissuade you. He's a really great doctor and has helped me a lot. E-mail me at jess_clawson@yahoo.com if you want to discuss celiac in Gainesville more.

[fig girl]

sylviaann, on Jun 26 2009, 11:35 AM, said:

Hi there,

I love in Florida (Tampa area) and the only real Celiac Specialist is Dr. Cynthia Rudert in Atlanta. You would have to drive five hours to see her, but she is well worth the trip. She does not file insurance claims but if you have insurance with an out-of network option, you can file the claim on your own. If you have been gluten-free for a long time, she probably would not run a blood lab panel on you. I'm not sure what she would do....maybe biopsy you after a few visits/evaluation. I never tested positive for celiac but she knows I have definite symptoms of gluten sensitivity or celiac.
Hope this helps you,

Sylviaann

I agree with Sylviaann about Dr. Rudert. I've seen her twice and learned so much from her. My GP diagnosed me with gluten sensitivity (neg. bloodwork) and Dr. Rudert and I both agreed not to have the biospy done since i was already on a gluten free diet when i first seen her and had improved on it. Unfortunately i've had other intolerances to pop up and i'm on the Specific Carbohydrate Diet and have improved a lot more on it than just gluten free. I have to have a colonoscopy every 3 years and this is my year to have one and i've never had an endoscope done so I'm leaning towards Dr. Rudert performing these especially since i have so many other intolerances and she'll know what to look for. It will cost more since she's out of network but the facility she performs them in is in network so hopefully everything but the Dr's fees will be covered in network - i'm still looking in to this to try to make sure.

Syviaann - reading your post about Dr. Rudert has helped me - I've been gluten free for 1 1/2 years so a biopsy wouldn't be done to diagnose celiac but i think Dr. Rudert will know other things to look for while performing these. I don't want to go into debt with medical bills but i really am leaning towards her doing these especially since this will be my first endoscope. I just keep going back and forth on whether to try a new Gastro Dr. that is in network vs. Dr. Rudert. My previous gastro Dr. i'd rather not see as he just gave me a prescription for Nexium and never did any testing. I just wanted to ask you if you thought it was worth it to see her even though you didn't have a celiac diagnosis like me? Thanks for any information...i really appreciate it!

[sylviaann]

fig girl, on Jul 13 2009, 09:22 AM, said:

I agree with Sylviaann about Dr. Rudert. I've seen her twice and learned so much from her. My GP diagnosed me with gluten sensitivity (neg. bloodwork) and Dr. Rudert and I both agreed not to have the biospy done since i was already on a gluten free diet when i first seen her and had improved on it. Unfortunately i've had other intolerances to pop up and i'm on the Specific Carbohydrate Diet and have improved a lot more on it than just gluten free. I have to have a colonoscopy every 3 years and this is my year to have one and i've never had an endoscope done so I'm leaning towards Dr. Rudert performing these especially since i have so many other intolerances and she'll know what to look for. It will cost more since she's out of network but the facility she performs them in is in network so hopefully everything but the Dr's fees will be covered in network - i'm still looking in to this to try to make sure.

Syviaann - reading your post about Dr. Rudert has helped me - I've been gluten free for 1 1/2 years so a biopsy wouldn't be done to diagnose celiac but i think Dr. Rudert will know other things to look for while performing these. I don't want to go into debt with medical bills but i really am leaning towards her doing these especially since this will be my first endoscope. I just keep going back and forth on whether to try a new Gastro Dr. that is in network vs. Dr. Rudert. My previous gastro Dr. i'd rather not see as he just gave me a prescription for Nexium and never did any testing. I just wanted to ask you if you thought it was worth it to see her even though you didn't have a celiac diagnosis like me? Thanks for any information...i really appreciate it!

You are correct..most GI physicians are not well educated on the "gluten spectrum" and do not take it seriously. They spend little time discussing our problems and want to shuffle patients in and out as quickly as possible. We can"thank" our wonderful health care system which is run by the health insurance companies for this. I think Dr. Rudert is very knowledgeable about Celiac and gluten sensitivity. She is also open minded to consider all secondary health problems which may be caused by gluten. I travel eight hours to see Dr. Rudert so I always have my agenda (i.e. recent developments and research regarding my condition) to discuss with her. I do not have a "formal" Celiac Diagnosis (i.e. negative blood labs 1999 and 2007(Florida) and biopsy-1999-Dr. Rudert). I had a colonoscopy last year by another doctor in Floria so I will not be due for several years. Depending on my progress, I may have an upper GI endoscopy next year...and I would have Dr. Rudert do the procedure. Does she have priviledges at St. Joseph's or Northside Hospital?
To answer your question: I believe it is worth it to keep Dr. R as your GI physician. I'm sure she will be very thorough in her endoscopic procedures. I would talk to her about your financial concerns and see if she can set up a payment plan for you. I know she normally does not do this but talk to her personally and maybe she would consider it. Have you seen a qualified dietician (one who specializes in gluten related disorders?) If you live in the Atlanta area, I would ask Dr. Rudert for a referral to one. I am currently working with a very knowledgable dietician in Florida and she ordered an Organic Acids test to determine any vitamin and nutritional deficiencies. I have a high level of suspicion that magnesium and calcium will be on the list as I have been suffering from periodic limb movement for almost three years. Here is a link for the test (a doctor or dietician can order it). http://www.metametrix.com/content/Director...rehensive-Urine
Talk to you soon,
Sylviaann

[fig girl]

sylviaann, on Jul 13 2009, 08:58 AM, said:

You are correct..most GI physicians are not well educated on the "gluten spectrum" and do not take it seriously. They spend little time discussing our problems and want to shuffle patients in and out as quickly as possible. We can"thank" our wonderful health care system which is run by the health insurance companies for this. I think Dr. Rudert is very knowledgeable about Celiac and gluten sensitivity. She is also open minded to consider all secondary health problems which may be caused by gluten. I travel eight hours to see Dr. Rudert so I always have my agenda (i.e. recent developments and research regarding my condition) to discuss with her. I do not have a "formal" Celiac Diagnosis (i.e. negative blood labs 1999 and 2007(Florida) and biopsy-1999-Dr. Rudert). I had a colonoscopy last year by another doctor in Floria so I will not be due for several years. Depending on my progress, I may have an upper GI endoscopy next year...and I would have Dr. Rudert do the procedure. Does she have priviledges at St. Joseph's or Northside Hospital?
To answer your question: I believe it is worth it to keep Dr. R as your GI physician. I'm sure she will be very thorough in her endoscopic procedures. I would talk to her about your financial concerns and see if she can set up a payment plan for you. I know she normally does not do this but talk to her personally and maybe she would consider it. Have you seen a qualified dietician (one who specializes in gluten related disorders?) If you live in the Atlanta area, I would ask Dr. Rudert for a referral to one. I am currently working with a very knowledgable dietician in Florida and she ordered an Organic Acids test to determine any vitamin and nutritional deficiencies. I have a high level of suspicion that magnesium and calcium will be on the list as I have been suffering from periodic limb movement for almost three years. Here is a link for the test (a doctor or dietician can order it). http://www.metametrix.com/content/Director...rehensive-Urine
Talk to you soon,
Sylviaann

Thank you Sylviaann! I really appreciate all of the information and advice. I really think I'll have Dr. Rudert perform these tests and i think she may have priviledges at St. Joseph's and/or Northside...i'll give her office a call and ask. I'll also check and see if St. Joseph's and Northside is covered under my insurance which i think they are. If I don't go to Dr. R for this i think i'd always be second guessing if they looked for everything they needed to. I've called the Endoscopy Center (downstairs below her office) that she uses and they do accept my insurance and they're listed as a provider so they should hopefully cover the charges as in-network for the fees besides the Dr. fees. Dr. R's office wanted me to check and make sure the facility will bill separately from the Dr. fees and they said that they do. I think i read somewhere also that the cost is a little less in a facility rather than a hospital so maybe that'll be the case. I don't live in the Atlanta area but i'm only about 2 hours away. Thanks for the advice on the dietician...a while back i had found a Nutritionist about an hour away and from her website she looks to be very knowledgeable in celiac and gluten sensitivity. I've been thinking about calling and maybe making an appt. I'll ask Dr. R about her and if she has any other recommendations in my area.

My GP is very good and she had recommended Dr. R to me. She's testing my vitamin D3 levels to see what my maintenance supplement level should be. I went from 2,000 iu's to 5,000 iu's and my level went from 23 to 43 and i felt much better on the 5,000 so the 5,000 a day or more i think will be my maintenance level. Thanks for the metametrix link also - i will print that out and ask my Dr. about it. I wouldn't be surprised if i'm not deficient in calcium and magnesium also as i have osteopenia which was diagnosed about 8 yrs ago....long before my gluten sensitive diagnosis. Good luck with your acids test....sounds like you found a great dietician. Thanks again for all of the great information....it has helped me a lot! I'll keep you informed and let me know how you do on your test.

Michelle

[sylviaann]

fig girl, on Jul 14 2009, 07:29 AM, said:

Thank you Sylviaann! I really appreciate all of the information and advice. I really think I'll have Dr. Rudert perform these tests and i think she may have priviledges at St. Joseph's and/or Northside...i'll give her office a call and ask. I'll also check and see if St. Joseph's and Northside is covered under my insurance which i think they are. If I don't go to Dr. R for this i think i'd always be second guessing if they looked for everything they needed to. I've called the Endoscopy Center (downstairs below her office) that she uses and they do accept my insurance and they're listed as a provider so they should hopefully cover the charges as in-network for the fees besides the Dr. fees. Dr. R's office wanted me to check and make sure the facility will bill separately from the Dr. fees and they said that they do. I think i read somewhere also that the cost is a little less in a facility rather than a hospital so maybe that'll be the case. I don't live in the Atlanta area but i'm only about 2 hours away. Thanks for the advice on the dietician...a while back i had found a Nutritionist about an hour away and from her website she looks to be very knowledgeable in celiac and gluten sensitivity. I've been thinking about calling and maybe making an appt. I'll ask Dr. R about her and if she has any other recommendations in my area.

My GP is very good and she had recommended Dr. R to me. She's testing my vitamin D3 levels to see what my maintenance supplement level should be. I went from 2,000 iu's to 5,000 iu's and my level went from 23 to 43 and i felt much better on the 5,000 so the 5,000 a day or more i think will be my maintenance level. Thanks for the metametrix link also - i will print that out and ask my Dr. about it. I wouldn't be surprised if i'm not deficient in calcium and magnesium also as i have osteopenia which was diagnosed about 8 yrs ago....long before my gluten sensitive diagnosis. Good luck with your acids test....sounds like you found a great dietician. Thanks again for all of the great information....it has helped me a lot! I'll keep you informed and let me know how you do on your test.

Michelle

Sounds like you have a great plan in place and a wonderful GP! I have Cigna PPO (in & out of network) and I need to make a few calls next year to see what services (like you) will be covered.
Most conventional physicians are not familar with this type of testing but if your doctor is "open" for innovative testing, this is a great diagnostic tool!. My dietician is working on her PhD and she raves about this test (she has taken it herself). My dietician fees and Organic Acids test is covered as an "Out of network" service but I still feel it is worth it. The testing by Metametrix is much more in depth than traditional blood labs (i.e. Quest or labcorp). I will let you know what my test results reveal (hopefully by this Friday).
BTW..I also have osteopenia (diagnosed last year).
Talk to you soon,
Sylviaann

[ugagirl]

sylviaann, on Jul 14 2009, 07:44 AM, said:

Sounds like you have a great plan in place and a wonderful GP! I have Cigna PPO (in & out of network) and I need to make a few calls next year to see what services (like you) will be covered.
Most conventional physicians are not familar with this type of testing but if your doctor is "open" for innovative testing, this is a great diagnostic tool!. My dietician is working on her PhD and she raves about this test (she has taken it herself). My dietician fees and Organic Acids test is covered as an "Out of network" service but I still feel it is worth it. The testing by Metametrix is much more in depth than traditional blood labs (i.e. Quest or labcorp). I will let you know what my test results reveal (hopefully by this Friday).
BTW..I also have osteopenia (diagnosed last year).
Talk to you soon,
Sylviaann

Sylviaann,

I know you addressed this in your previous posts and it sounds silly but I need to ask this specific question for my own encouragement. It is my understanding that both your blood tests and endo were negative but Dr. Rudert still thought celiac an option? I've been tested twice for celiac and both came back negative. Both doctors have told me that celiac is not an option if the test result is negative. I've also had my second endo this summer but my first with biopsy. The two samples she took were fine even though visually there were some issues. I ask this because I'm going to see Dr. Rudert Wed. I see an endometriosis specialist here in ATL and he feels my symptoms are clearly celiac and he has sent several patients in my position to Dr. Rudert with positive results. I feel so strongly this is the answer I'm looking for but have been hesitant to try an elimination diet. It's too expensive and difficult when your doctors are telling you it's impossible to have celiac with a negative result. It may sound weird, but this is hope for me. I'm not naive enough to think this is easy to deal with, but it's answers and the hope of going shopping with my mom without running to the bathroom every hour.

Thanks for your help.

[sylviaann]

ugagirl, on Jul 16 2009, 08:05 AM, said:

Sylviaann,

I know you addressed this in your previous posts and it sounds silly but I need to ask this specific question for my own encouragement. It is my understanding that both your blood tests and endo were negative but Dr. Rudert still thought celiac an option? I've been tested twice for celiac and both came back negative. Both doctors have told me that celiac is not an option if the test result is negative. I've also had my second endo this summer but my first with biopsy. The two samples she took were fine even though visually there were some issues. I ask this because I'm going to see Dr. Rudert Wed. I see an endometriosis specialist here in ATL and he feels my symptoms are clearly celiac and he has sent several patients in my position to Dr. Rudert with positive results. I feel so strongly this is the answer I'm looking for but have been hesitant to try an elimination diet. It's too expensive and difficult when your doctors are telling you it's impossible to have celiac with a negative result. It may sound weird, but this is hope for me. I'm not naive enough to think this is easy to deal with, but it's answers and the hope of going shopping with my mom without running to the bathroom every hour.

Thanks for your help.

Yes..Celiac Disease could still be an option or Gluten Sensitivity. Either way, the treatment would be the same..a gluten-free diet.
I tested negative (blood labs and biopsy) in 1999. I was retested (blood labs only) by an endocrinologist in 2007 (test results were negative). I decided to return to Dr. R. for a second opinion last year (I had not seen her in nine years) after suffering with worsening symptoms that made me non-functional. I knew something was terribly wrong and eight doctors had not taken the time to diagnose me properly.
I'm sure Dr. R. will share with you that 10% of celiacs test negative on the blood panel (the blood labs are not 100% accurate) and some celiacs are IGA deficient, meaning that they will produce negative test results repeatedly. My doctor in Florida did not test me for an IGA deficiency when he ordered my blood panel in 2007. Many doctors do not order the IGA deficiency blood lab when they order the celiac panel.
Here is a Q & A that Dr.R responded to on the Caln Thompson website a few years ago about this issue:
QUESTION: I was tested for celiac via a blood test after going back on gluten for two weeks and the IgG was (49) Positive and the IgA was Negative. After four more weeks of eating gluten we did the biopsy which came back negative. I was so miserable eating wheat again for that period of time I now continue to be gluten and dairy free even though the biopsy came back negative. I feel so much better that I continue to wonder if I still could be Celiac with the negative "Gold Standard Biopsy". Is there still any chance of this? Could I have IgA Deficiency? What does IgA Deficiency mean?

DR. RUDERT: IgA deficiency is increased in Celiac Disease. When I order Celiac antibodies I also always obtain serum for IgA. Since many of the blood tests are IgA antibodies, if one has Celiac Disease and is IgA deficient their blood tests may be "normal", therefore, representing a false negative. Of course, this would not pertain to antigliadin IgG.

I sometimes disagree with biopsies that come back "negative" or normal. Early Celiac Disease is sometimes difficult to diagnose. Secondly, I would hope that you had multiple biopsies performed from appropriate locations in the small intestine. In other words, if you just had one specimen taken during the procedure this could represent a sampling error.

Regardless, you appear to be obviously symptomatic when eating wheat. Therefore, if we assume the biopsies are correct and this does not represent sampling error, I would label you as being severely gluten intolerant versus latent Celiac Disease. Latent Celiac Disease can progress to Celiac Disease with continued gluten ingestion.

I would strongly encourage you to remain gluten free and in view of your symptoms, you probably don't need much encouragement.

....Here is another great resource..a recent audio interview with Dr. Peter Green regarding the issues/problems of physicians obtaining biospy samples (the doctor should obtain several and from the right area) and pathologists interpreting them correctly. Listen to this before you see Dr. R. so you will be able to share details of your history with her.

http://www.peoplespharmacy.com/2009/06/15/...nded-interv-31/
I hope this helps you and best of luck...Dr. R. will look out after your best interest. This is her area of expertise and I would trust her more that a regular GI physician (who has limited knowledge of the gluten spectrum).
Sylviaann

[fig girl]

sylviaann, on Jul 14 2009, 07:44 AM, said:

Sounds like you have a great plan in place and a wonderful GP! I have Cigna PPO (in & out of network) and I need to make a few calls next year to see what services (like you) will be covered.
Most conventional physicians are not familar with this type of testing but if your doctor is "open" for innovative testing, this is a great diagnostic tool!. My dietician is working on her PhD and she raves about this test (she has taken it herself). My dietician fees and Organic Acids test is covered as an "Out of network" service but I still feel it is worth it. The testing by Metametrix is much more in depth than traditional blood labs (i.e. Quest or labcorp). I will let you know what my test results reveal (hopefully by this Friday).
BTW..I also have osteopenia (diagnosed last year).
Talk to you soon,
Sylviaann

Thanks Sylviaann!
I'm sorry you have osteopenia also but hopefully we can reverse it or at least keep it from turning into osteoporosis....i think we're on the right track! Thanks for letting me know your dietician fees and organic acid test is covered out of network. I'll call my insurance and check on them also. My Dr. wants to do a saliva hormone test and i've got to call about that - i doubt that it's covered in network but maybe out of network. Good luck on your test results and hope you hear something tomorrow.

Michelle

[fig girl]

ugagirl, on Jul 16 2009, 07:05 AM, said:

Sylviaann,

I know you addressed this in your previous posts and it sounds silly but I need to ask this specific question for my own encouragement. It is my understanding that both your blood tests and endo were negative but Dr. Rudert still thought celiac an option? I've been tested twice for celiac and both came back negative. Both doctors have told me that celiac is not an option if the test result is negative. I've also had my second endo this summer but my first with biopsy. The two samples she took were fine even though visually there were some issues. I ask this because I'm going to see Dr. Rudert Wed. I see an endometriosis specialist here in ATL and he feels my symptoms are clearly celiac and he has sent several patients in my position to Dr. Rudert with positive results. I feel so strongly this is the answer I'm looking for but have been hesitant to try an elimination diet. It's too expensive and difficult when your doctors are telling you it's impossible to have celiac with a negative result. It may sound weird, but this is hope for me. I'm not naive enough to think this is easy to deal with, but it's answers and the hope of going shopping with my mom without running to the bathroom every hour.

Thanks for your help.

Hi ugagirl,
I just wanted to say good luck with your appt. with Dr. Rudert and as Sylviaann said she'll be able to help you and she's a super nice person as well as a super Dr. I understand about you feeling hope that this is the answer...we usually suffer so long not knowing what is wrong it's such a relief to finally know what it is when diagnosed. Also, i had researched a while back on a nutritionist familiar with celiac/gluten sensitivity and found one on-line in Watkinsville near Athens (i figure you know where this is hence your name ugagirl) Let me know if you'd like the information on her and i'll be glad to share. I'm planning on giving her a call soon.

Michelle

[ugagirl]

fig girl, on Jul 16 2009, 07:58 PM, said:

Thanks Sylviaann!
I'm sorry you have osteopenia also but hopefully we can reverse it or at least keep it from turning into osteoporosis....i think we're on the right track! Thanks for letting me know your dietician fees and organic acid test is covered out of network. I'll call my insurance and check on them also. My Dr. wants to do a saliva hormone test and i've got to call about that - i doubt that it's covered in network but maybe out of network. Good luck on your test results and hope you hear something tomorrow.

Michelle

Thanks for the responses and encouragement! As excited as I am about this doctors appt, I'm also nervous. When I heard the first negative report 4 or 5 years ago I was devastated! Since then I've been through so many tests with vague answers. A lot came back abnormal, but not enough to be the problem. I don't think I can take much more of the same and I don't know what I'll do if Dr. Rudert doesn't have answers. I know you guys have all been through the same thing but I don't know which is worse, the time spent at doctors or the money wasted. Not to mention just feeling sick and tired all the time. We'll see how it goes and see what Dr. Rudert has to say.

Michelle, I'm sad to say that I no longer live in Athens. I did graduate from UGA and am a die hard fan, but now reside in Paulding Co. Ga. Thanks for the info though. Maybe one day I'll move back to Athens and I'll get that number from you If my thoughts are right and this is celiac, I'll be on this message board a lot more often.