Please Help! Doctor In Gainesville, Fl?

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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]

Open Original Shared Link

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

[sylviaann]

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

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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]

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]

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). Open Original Shared Link

Talk to you soon,

Sylviaann

[fig girl]

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). Open Original Shared Link

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]

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]

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]

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.

Open Original Shared Link

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]

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]

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]

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.

[fig girl]

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.

Hi Sylviaann and Ugagirl,

I hope y'all are doing well. Just wanted to share that i decided to go ahead and make my appt with Dr. Rudert which is Aug. 17th - i had wanted to get it done on a Monday and they said that's the day she usually does them so that was great. I'd rather be on the clear liquid diet on Sunday at home rather than at work.

Sylviaann - i hope your test results have helped you figure out some things if you've gotten them back. I see my GP again in Aug. after my colonoscopy and endoscopy so i've printed out the metametrix info and will take it with me. Thanks again for all of the helpful information!

Ugagirl - i hope your appt went well with Dr. Rudert!

My GP contacted me today and let me know my Vit D3 had dropped from 62 to 54 in a month - she had me drop the dosage to 2,000 iu's the past month. So she recommended i start taking 4,000 iu's a day and will check it again in a month to see where it's at. I should start feeling a little better soon as i felt much better taking the 5,000 iu's.

Michelle

[sylviaann]

Hi Sylviaann and Ugagirl,

I hope y'all are doing well. Just wanted to share that i decided to go ahead and make my appt with Dr. Rudert which is Aug. 17th - i had wanted to get it done on a Monday and they said that's the day she usually does them so that was great. I'd rather be on the clear liquid diet on Sunday at home rather than at work.

Sylviaann - i hope your test results have helped you figure out some things if you've gotten them back. I see my GP again in Aug. after my colonoscopy and endoscopy so i've printed out the metametrix info and will take it with me. Thanks again for all of the helpful information!

Ugagirl - i hope your appt went well with Dr. Rudert!

My GP contacted me today and let me know my Vit D3 had dropped from 62 to 54 in a month - she had me drop the dosage to 2,000 iu's the past month. So she recommended i start taking 4,000 iu's a day and will check it again in a month to see where it's at. I should start feeling a little better soon as i felt much better taking the 5,000 iu's.

Michelle

Hi Michelle,

I am so glad you were able to schedule your appointment/procedure with Dr. R. Are you planning to have a biopsy/ endoscopy? I received my Organic Acids test results and they were very interesting to say the least. One discovery that I would have never known or imagined..I have elevated 2-Methylhippurate (a sensitive & specific marker for xylene exposure). Thsi greatly concerns me becuse it is an environmental toxin commonly found in petroleum products such as gasoline, paint thinner, varnishes, new carpet,, etc. Its vapors are released from many building and decorating materials. I also had a few other areas where deficiencies exist so my first step will be taking a powdered supplement drink daily for six weeks (this is used for chronic fatigue issues that have been detected and to detox from the xylene exposure). I will also take lipoic acid, CoQ10, multi vitamin capsule, probiotics, and several B vitamins (B1, 2,3, and 5).

My revelation came after I started researching xylene and toxin exposure. Apparently, it is becoming more common that autoimmune disorders can be triggered by toxic chemical exposures (i.e. mold, mercury, xylene) in our environment. Our brains can be affected by this exposure and cause all kinds of neuro and digestive problems (I suffer from both). One belief is that toxin exposure can interfere with our normal ability to metabolize our nutrients properly. This test has opened my eyes to see that gluten is only one piece of this puzzle...toxin exposure is another..and toxins may have caused/triggered my gluten problem. My goal is to "detox" and reduce my xylene exposure.

Sorry for the long story, but I am truly amazed at my recent discoveries!

Talk to you soon,

sylviaann

[fig girl]

Hi Michelle,

I am so glad you were able to schedule your appointment/procedure with Dr. R. Are you planning to have a biopsy/ endoscopy? I received my Organic Acids test results and they were very interesting to say the least. One discovery that I would have never known or imagined..I have elevated 2-Methylhippurate (a sensitive & specific marker for xylene exposure). Thsi greatly concerns me becuse it is an environmental toxin commonly found in petroleum products such as gasoline, paint thinner, varnishes, new carpet,, etc. Its vapors are released from many building and decorating materials. I also had a few other areas where deficiencies exist so my first step will be taking a powdered supplement drink daily for six weeks (this is used for chronic fatigue issues that have been detected and to detox from the xylene exposure). I will also take lipoic acid, CoQ10, multi vitamin capsule, probiotics, and several B vitamins (B1, 2,3, and 5).

My revelation came after I started researching xylene and toxin exposure. Apparently, it is becoming more common that autoimmune disorders can be triggered by toxic chemical exposures (i.e. mold, mercury, xylene) in our environment. Our brains can be affected by this exposure and cause all kinds of neuro and digestive problems (I suffer from both). One belief is that toxin exposure can interfere with our normal ability to metabolize our nutrients properly. This test has opened my eyes to see that gluten is only one piece of this puzzle...toxin exposure is another..and toxins may have caused/triggered my gluten problem. My goal is to "detox" and reduce my xylene exposure.

Sorry for the long story, but I am truly amazed at my recent discoveries!

Talk to you soon,

sylviaann

Hi Sylviaann!

Wow, that's great you've found that out through the metametrix testing! I'm pretty sure i have some heavy metal toxicity - about 3 yrs ago my husband and I had ours tested through a Dr. who was treating my husband for dizzines and we both had high mecury and a few others. I need to pull those tests and look at them. My husband did chelation but hasn't followed up with it and i didn't do chelation because i had just started hrt. Hopefully the SCD has helped me to rid some. That is very interesting that mold, metals, etc. can cause the neuro and digestive disorders as well as autoimmune disorders. I have the neuro too - brain fog, tingling in fingers, arms, toes and legs sometimes - adding the vit d3 seems to have helped with them though. My husband has hypothyroidism and takes synthroid - this along with the dizziness and other symptoms is why the Dr. tested his heavy metals. I think he would do much better on gluten-free and scd - he will eat some gluten-free things that i make but since i'm so limited now he doesn't really eat anything i eat.

I'm not sure if i'll have a biopsy or not - i'll have to ask Dr. R about that i guess. I've been gluten-free for 1 1/2 years so i mainly just want her to look around since i've never had one done. I guess whatever she thinks should be done i'll be ok with. She may want to still do one to check and see if the villi is damaged if she can't see it?

Sounds like you have a wonderful plan to rid yourself of these. Good for you! I believe gluten is only one piece of the puzzle for me as well. It's so hard to figure out what all is going on and it sounds like this test will help a lot. Good luck on detoxing the xlyene and i'm glad to know the test was very productive and informative for you! I hope you start feeling much better soon. Let me know how it goes!

Michelle

[sylviaann]

Hi Sylviaann!

Wow, that's great you've found that out through the metametrix testing! I'm pretty sure i have some heavy metal toxicity - about 3 yrs ago my husband and I had ours tested through a Dr. who was treating my husband for dizzines and we both had high mecury and a few others. I need to pull those tests and look at them. My husband did chelation but hasn't followed up with it and i didn't do chelation because i had just started hrt. Hopefully the SCD has helped me to rid some. That is very interesting that mold, metals, etc. can cause the neuro and digestive disorders as well as autoimmune disorders. I have the neuro too - brain fog, tingling in fingers, arms, toes and legs sometimes - adding the vit d3 seems to have helped with them though. My husband has hypothyroidism and takes synthroid - this along with the dizziness and other symptoms is why the Dr. tested his heavy metals. I think he would do much better on gluten-free and scd - he will eat some gluten-free things that i make but since i'm so limited now he doesn't really eat anything i eat.

I'm not sure if i'll have a biopsy or not - i'll have to ask Dr. R about that i guess. I've been gluten-free for 1 1/2 years so i mainly just want her to look around since i've never had one done. I guess whatever she thinks should be done i'll be ok with. She may want to still do one to check and see if the villi is damaged if she can't see it?

Sounds like you have a wonderful plan to rid yourself of these. Good for you! I believe gluten is only one piece of the puzzle for me as well. It's so hard to figure out what all is going on and it sounds like this test will help a lot. Good luck on detoxing the xlyene and i'm glad to know the test was very productive and informative for you! I hope you start feeling much better soon. Let me know how it goes!

Michelle

Hey Michelle,

You are right..Dr, R. may or may not want to biospy you. I read somewhere that the "camera pill" is being used more to view areas in the stomach that can be difficult to see with an upper endoscopy. Anyway, Dr. R. will know best....she takes great care of her patients .....I love my visits with her!

I am curious to know..what type of doctor tested you and your husband for heavy metals? What type of testing did you have? Do you both have mercury dental fillings? I am trying to figure out if there is any additional testing I should pursue. My research has indicated that xylene leaves the body quickly (within 24 hours) so I am suspicious that my carpet, upholstery or contaminated air from the garage is circulating into our home. Urine tests are the only indicators I know of.

I woke up with this morning with eyes that were blood shot red, dark and my nose was very stuffed up. This has been going on for a long time and I think Xylene may be causing it.

Thanks for your input Michelle,

Sylviaann

[JayHowe]

I goto Digestive Disease Associates, and I see Dr Burns, he is a caring person and the office is first class. But very very busy..

www.ddadocs.com

Hope this helps....

[FMcGee]

I goto Digestive Disease Associates, and I see Dr Burns, he is a caring person and the office is first class. But very very busy..

www.ddadocs.com

Hope this helps....

I see him, too, he's great. Two thumbs up, and his whole office staff rocks.

[fig girl]

Hey Michelle,

You are right..Dr, R. may or may not want to biospy you. I read somewhere that the "camera pill" is being used more to view areas in the stomach that can be difficult to see with an upper endoscopy. Anyway, Dr. R. will know best....she takes great care of her patients .....I love my visits with her!

I am curious to know..what type of doctor tested you and your husband for heavy metals? What type of testing did you have? Do you both have mercury dental fillings? I am trying to figure out if there is any additional testing I should pursue. My research has indicated that xylene leaves the body quickly (within 24 hours) so I am suspicious that my carpet, upholstery or contaminated air from the garage is circulating into our home. Urine tests are the only indicators I know of.

I woke up with this morning with eyes that were blood shot red, dark and my nose was very stuffed up. This has been going on for a long time and I think Xylene may be causing it.

Thanks for your input Michelle,

Sylviaann

Hi Sylviaann,

Thanks for the encouragement. You're right, Dr. R will know what is best. Her office called me yesterday and is calling my insur. to verify coverage and will be mailing me the info. packet. I hope i'll be able to do the recommended prep with no problems....i'm intolerant to so many foods right now.

I finally remembered to look this morning on my copy of my metals testing and it was a urine test and they had sent it to Doctor's Data labs. The Dr. was actually an ENT and he had gone in with another Dr. in town and opened a Neuro Sensory Center but it has closed now. He still has his practice as an ENT and i think does them now from his office but i'm not sure. He also does food allergy testing i believe - my GP mentioned him for food allergy testing. We both have silver mercury fillings too. I have 3 and i think he has more than i do. I guess that would be the source i don't know. I often wonder if we need to check things in our house that may be causing some of our health problems....i just don't know where to start to do that. Our water is filtered through our refrigerator filter. Ugh, it's kind of exhausting to think about trying to figure out if it is something in our home. I hope you find out the xylene source quickly and can get it under control. The past few weeks i've been sneezing and have had a stuffy nose, itchy eyes but i think it's because it's so dry and my seasonal allergies bother me more in the Fall - i think ragweed is blooming here...it usually does the end of July and in August.

Thanks Sylviaann and let me know how it goes eliminating the xylene.

Michelle

[sylviaann]

Hi Sylviaann!

Wow, that's great you've found that out through the metametrix testing! I'm pretty sure i have some heavy metal toxicity - about 3 yrs ago my husband and I had ours tested through a Dr. who was treating my husband for dizzines and we both had high mecury and a few others. I need to pull those tests and look at them. My husband did chelation but hasn't followed up with it and i didn't do chelation because i had just started hrt. Hopefully the SCD has helped me to rid some. That is very interesting that mold, metals, etc. can cause the neuro and digestive disorders as well as autoimmune disorders. I have the neuro too - brain fog, tingling in fingers, arms, toes and legs sometimes - adding the vit d3 seems to have helped with them though. My husband has hypothyroidism and takes synthroid - this along with the dizziness and other symptoms is why the Dr. tested his heavy metals. I think he would do much better on gluten-free and scd - he will eat some gluten-free things that i make but since i'm so limited now he doesn't really eat anything i eat.

I'm not sure if i'll have a biopsy or not - i'll have to ask Dr. R about that i guess. I've been gluten-free for 1 1/2 years so i mainly just want her to look around since i've never had one done. I guess whatever she thinks should be done i'll be ok with. She may want to still do one to check and see if the villi is damaged if she can't see it?

Sounds like you have a wonderful plan to rid yourself of these. Good for you! I believe gluten is only one piece of the puzzle for me as well. It's so hard to figure out what all is going on and it sounds like this test will help a lot. Good luck on detoxing the xlyene and i'm glad to know the test was very productive and informative for you! I hope you start feeling much better soon. Let me know how it goes!

Michelle

Hi Michelle,

I hope you receive my message..How did your test/procedure with Dr. R. go today?? I found a really interesting article that I thought you would like to read since you and I have been been exposed to toxic chemicals. Check this out...there is a definite link between chemical exposure and gluten intolerance! I am still "detoxing" from my exposure but this information is really making me the pieces of my puzzle together. Something to think about......

Open Original Shared Link

Hope to chat with you soon,

Sylviaann

[fig girl]

Hi Michelle,

I hope you receive my message..How did your test/procedure with Dr. R. go today?? I found a really interesting article that I thought you would like to read since you and I have been been exposed to toxic chemicals. Check this out...there is a definite link between chemical exposure and gluten intolerance! I am still "detoxing" from my exposure but this information is really making me the pieces of my puzzle together. Something to think about......

Open Original Shared Link

Hope to chat with you soon,

Sylviaann

Hi Sylviaann,

Thanks for asking, it went really well. I woke up from the procedure and felt like i had taken a 5 minute nap! No sore throat from the endoscopy although my nose was itching the way it feels when my allergies are starting up and my nose started running. So i suspect i am allergic to something - maybe latex or if they sprayed something down my throat. My sister reacted the same way after her endo. and her Dr. thought it may be latex. A friend of mine had an allergy headache after hers plus a really sore throat and her Dr. thought it may be the spray they sprayed down her throat. I called Dr. R's office and asked and she was going to check on it for me.

My colonoscopy was clean...no polyps...yay! She said she recommends having another one in 4 years....an extra year for me! The endo. she saw some green bile in my stomach and asked if i still have my gall bladder and i do and she also saw some specks of dried blood but no ulcers. She said my stomach lining was irritated and prescribed carafate and i've been taking 1 T 1 hour before each meal and 1 before bed. It's helping so far - i haven't had any pain or soreness so that's good. It contains aluminum though but hopefully i'll only have to take for very long. She took biopsies of my small intestine and stomach and i haven't heard back yet. I'll go see her again in a couple of weeks. She's so sweet and so thorough. I'm so glad I got her to do them - thanks again for the encouragement.

Thanks for the link- i haven't read all of it yet but will. Seems really interesting- i'll bet toxins played a big role in my intolerances. I hope your detoxing continues to go well and you feel better soon. Sounds like you're on the right track for healing. Did you find the source(s) of your xylene exposure? I sometimes wake up with red eyes and stuffy nose also but figure it's just allergies. Ragweed is blooming now so i guess it's from it but i think that could be just a symptom from my compromised immune system. I need to be tested for toxins again and i need to get my house checked out and move a few bottles of chemicals out - i've gotten most of them out.

Sorry this is so long. I'll let you know when i hear back from Dr. R's office. Hope you're doing well and hope to hear from you soon!

Michelle

[sylviaann]

Hi Sylviaann,

Thanks for asking, it went really well. I woke up from the procedure and felt like i had taken a 5 minute nap! No sore throat from the endoscopy although my nose was itching the way it feels when my allergies are starting up and my nose started running. So i suspect i am allergic to something - maybe latex or if they sprayed something down my throat. My sister reacted the same way after her endo. and her Dr. thought it may be latex. A friend of mine had an allergy headache after hers plus a really sore throat and her Dr. thought it may be the spray they sprayed down her throat. I called Dr. R's office and asked and she was going to check on it for me.

My colonoscopy was clean...no polyps...yay! She said she recommends having another one in 4 years....an extra year for me! The endo. she saw some green bile in my stomach and asked if i still have my gall bladder and i do and she also saw some specks of dried blood but no ulcers. She said my stomach lining was irritated and prescribed carafate and i've been taking 1 T 1 hour before each meal and 1 before bed. It's helping so far - i haven't had any pain or soreness so that's good. It contains aluminum though but hopefully i'll only have to take for very long. She took biopsies of my small intestine and stomach and i haven't heard back yet. I'll go see her again in a couple of weeks. She's so sweet and so thorough. I'm so glad I got her to do them - thanks again for the encouragement.

Thanks for the link- i haven't read all of it yet but will. Seems really interesting- i'll bet toxins played a big role in my intolerances. I hope your detoxing continues to go well and you feel better soon. Sounds like you're on the right track for healing. Did you find the source(s) of your xylene exposure? I sometimes wake up with red eyes and stuffy nose also but figure it's just allergies. Ragweed is blooming now so i guess it's from it but i think that could be just a symptom from my compromised immune system. I need to be tested for toxins again and i need to get my house checked out and move a few bottles of chemicals out - i've gotten most of them out.

Sorry this is so long. I'll let you know when i hear back from Dr. R's office. Hope you're doing well and hope to hear from you soon!

Michelle

Hi Michelle,

I am still struggling with my myoclonus symptoms and it has caused me great frustration. I stopped eating all gluten-free bread, pasta, and flours a week ago and am now questioning whether lundberg brown rice glutened me this past Monday. I cannot believe how incredibly super sensitive I am..and starving! Please keep me posted on your results!

Talk to you soon,

Sylviaann