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Need To Find A Good Dr In Florida--please Help!

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Can anyone suggest a good doctor in Florida? I live in the Central Florida area (Orlando), but at this point I'm willing to travel anywhere.

I have a positive blood test (endomysial ab (iga) screen), and my gp says I need to see a gastro. Went to one today and he was horrible! He sounded like he was in the dark ages when it came to celiac. He called it "sprue", and said I couldn't possibly have it because I'm too fat. He didn't bother to listen to what I had to say, especially that I had tried going gluten-free for 3 weeks and felt great and actually lost weight, which I haven't been able to do in 5 years! He was more interested in putting me on a diet and exercise program (as if I've never tried that!!!) and told me I needed to bring him workout logs signed by a trainer at the Y or he wouldn't consider them valid--how insulting!!!

Anyway, I would love to find a gastro that will actually listen to me. I already know I need to go gluten-free, but I would like to have the endoscopy done because there is a possible undiagnosed history in my family--father died of liver chirrosis, grandmother of stomach cancer, etc. Any input from anyone would be greatly appreciated!!!

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Can anyone suggest a good doctor in Florida? I live in the Central Florida area (Orlando), but at this point I'm willing to travel anywhere.

I have a positive blood test (endomysial ab (iga) screen), and my gp says I need to see a gastro. Went to one today and he was horrible! He sounded like he was in the dark ages when it came to celiac. He called it "sprue", and said I couldn't possibly have it because I'm too fat. He didn't bother to listen to what I had to say, especially that I had tried going gluten-free for 3 weeks and felt great and actually lost weight, which I haven't been able to do in 5 years! He was more interested in putting me on a diet and exercise program (as if I've never tried that!!!) and told me I needed to bring him workout logs signed by a trainer at the Y or he wouldn't consider them valid--how insulting!!!

Anyway, I would love to find a gastro that will actually listen to me. I already know I need to go gluten-free, but I would like to have the endoscopy done because there is a possible undiagnosed history in my family--father died of liver chirrosis, grandmother of stomach cancer, etc. Any input from anyone would be greatly appreciated!!!

Hi There,

I live east of Tampa and encountered the same problem. I have yet to find a GI doctor in my area who is well educated on Celiac Disease. I travel to Atlanta to see Dr. Cynthia Rudert 2 x per year (she was my former doctor and is the only Celiac Specialist in the southeast). Since you have a formal diagnosis and strong family history, you may want to seriously consider seeing her. She will spend quality time with you, is extremely knowledgable and a great listener!

Please let me now if I can help you further!

Warmest regards,

Sylvia Ann

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Hi There,

I live east of Tampa and encountered the same problem. I have yet to find a GI doctor in my area who is well educated on Celiac Disease. I travel to Atlanta to see Dr. Cynthia Rudert 2 x per year (she was my former doctor and is the only Celiac Specialist in the southeast). Since you have a formal diagnosis and strong family history, you may want to seriously consider seeing her. She will spend quality time with you, is extremely knowledgable and a great listener!

Please let me now if I can help you further!

Warmest regards,

Sylvia Ann

I found out the NEWER Doctors seem much more well aware of celiac than the oldtimers. My new doc ran celiac test First after she saw my previous testing done by my old doc

Chuck

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Can anyone suggest a good doctor in Florida? I live in the Central Florida area (Orlando), but at this point I'm willing to travel anywhere.

I have a positive blood test (endomysial ab (iga) screen), and my gp says I need to see a gastro. Went to one today and he was horrible! He sounded like he was in the dark ages when it came to celiac. He called it "sprue", and said I couldn't possibly have it because I'm too fat. He didn't bother to listen to what I had to say, especially that I had tried going gluten-free for 3 weeks and felt great and actually lost weight, which I haven't been able to do in 5 years! He was more interested in putting me on a diet and exercise program (as if I've never tried that!!!) and told me I needed to bring him workout logs signed by a trainer at the Y or he wouldn't consider them valid--how insulting!!!

Anyway, I would love to find a gastro that will actually listen to me. I already know I need to go gluten-free, but I would like to have the endoscopy done because there is a possible undiagnosed history in my family--father died of liver chirrosis, grandmother of stomach cancer, etc. Any input from anyone would be greatly appreciated!!!

I live in Tampa, FL and just went to Dr. Feldman last Monday and he did blood work and since my tests came back pointing to celiac disease he scheduled me yesterday for a Colonoscopy which confirmed his diagnosis. His number is 813-972-2324.

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Can anyone suggest a good doctor in Florida? I live in the Central Florida area (Orlando), but at this point I'm willing to travel anywhere.

I have a positive blood test (endomysial ab (iga) screen), and my gp says I need to see a gastro. Went to one today and he was horrible! He sounded like he was in the dark ages when it came to celiac. He called it "sprue", and said I couldn't possibly have it because I'm too fat. He didn't bother to listen to what I had to say, especially that I had tried going gluten-free for 3 weeks and felt great and actually lost weight, which I haven't been able to do in 5 years! He was more interested in putting me on a diet and exercise program (as if I've never tried that!!!) and told me I needed to bring him workout logs signed by a trainer at the Y or he wouldn't consider them valid--how insulting!!!

Anyway, I would love to find a gastro that will actually listen to me. I already know I need to go gluten-free, but I would like to have the endoscopy done because there is a possible undiagnosed history in my family--father died of liver chirrosis, grandmother of stomach cancer, etc. Any input from anyone would be greatly appreciated!!!

I don't know if you are still looking for a good Gastroenterologist but I just went to Dr Henry Levine at the Center for Digestive Health in Orlando, FL. His office is off of Mills Ave near the OMA. After having undiagnosed and misdiagnosed Celiac disease for years Dr Levine focused in on it within the first few minutes of my initial consult. He asked about my ethnic background and listen to the problems I was having and my eating habits. I had a blood test, a barium xray (to rule out acid reflux, which all the other doctors treated me for), an ultrsound to check my gallbadder and liver and an upper endoscopy (he performed at a diagnostic wing in the practice's offices). I found out Tuesday that I have Celiac. Dr Levine is an experienced professional. I would recommend him to go over your family history. He zeroed in on my heritage and understands the relationship between heredity and external triggers.

Good Luck! I hope you can achieve a healthy understanding of what is ailing you and can get to feeling better soon!

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My family and I went to the University of Florida hospital. They know what they are doing, did my endoscopy fine and diagnosed me right after.

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I don't know if you are still looking for a good Gastroenterologist but I just went to Dr Henry Levine at the Center for Digestive Health in Orlando, FL. His office is off of Mills Ave near the OMA. After having undiagnosed and misdiagnosed Celiac disease for years Dr Levine focused in on it within the first few minutes of my initial consult. He asked about my ethnic background and listen to the problems I was having and my eating habits. I had a blood test, a barium xray (to rule out acid reflux, which all the other doctors treated me for), an ultrsound to check my gallbadder and liver and an upper endoscopy (he performed at a diagnostic wing in the practice's offices). I found out Tuesday that I have Celiac. Dr Levine is an experienced professional. I would recommend him to go over your family history. He zeroed in on my heritage and understands the relationship between heredity and external triggers.

Good Luck! I hope you can achieve a healthy understanding of what is ailing you and can get to feeling better soon!

Thank you for this info!! I'm newly diagnosed (by my primary care Dr... Which I guess it's a miracle that she thought of Celiac, now that I'm reading up on everyone's trails and tribulations with being diagnosed...!). But she sent me to two GI doctors who don't know ANYTHING about Celiac. When I had my endoscopy done, right before I went under the GI doc said, "Well, I KNOW you don't have Celiac sprue, but we'll do the procedure anyway." Very rude to be telling me this now. And he only did one biopsy, which thankfully showed the blunted vili.

Anyway. Now I'm looking for a GI doc in Orlando who knows about Celiac. So thanks for posting this!! :)

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I don't know if you are still looking for a good Gastroenterologist but I just went to Dr Henry Levine at the Center for Digestive Health in Orlando, FL. His office is off of Mills Ave near the OMA. After having undiagnosed and misdiagnosed Celiac disease for years Dr Levine focused in on it within the first few minutes of my initial consult. He asked about my ethnic background and listen to the problems I was having and my eating habits. I had a blood test, a barium xray (to rule out acid reflux, which all the other doctors treated me for), an ultrsound to check my gallbadder and liver and an upper endoscopy (he performed at a diagnostic wing in the practice's offices). I found out Tuesday that I have Celiac. Dr Levine is an experienced professional. I would recommend him to go over your family history. He zeroed in on my heritage and understands the relationship between heredity and external triggers.

Good Luck! I hope you can achieve a healthy understanding of what is ailing you and can get to feeling better soon!

This is most helpful. I live in Central Florida (Orlando) and between the allergist, PCP, Gastroenterologist, and Neurologist I have learned a lot about myself. I always wonder if the information I have been getting is the most sound. Like so many of us I have gotten a lot of mixed up information from the Dr. that it drives me nuts. Learning about a Dr. that gets it and is willing to spend the time with you is so helpful.

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I'm not new to Celiac's, but I'm new to the Central Florida doctors. I have been doing the front-desk screening & no one I've spoken to yet is very familiar with food allergies.

Any new input on this?

I'm specifically looking for a doctor that tests for FOOD allergies. I know gluten is not my only one, and I really am not having fun with the hit-or-miss method of eliminating things from my diet.

Thanks!

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I just found a wonderful Celiac's doctor in Central Florida!

William "Bill" Mayoral of The Center for Digestive Health http://www.centerfordigestivehealth.net/ saw me late yesterday.

I could not possibly be MORE IMPRESSED! This doctor KNOWS his stuff!

There was no need for me to educate him. Based on my history, he immediately began talking about Celiacs. "Here's the game plan..." The RIGHT blood tests, the RIGHT other tests, AND the SCOPE for tissue sample, AND COLONOSCOPY!!! YES!!!!

He was hesitant on the food allergy testing through (Company Name Removed - They Spammed This Forum and are Banned), but I can order that myself. My insurance probably won't pay for it anyway.

He even talked about IBS as a complicating issue, but would not elaborate until after the tests are back.

I hope this helps!

p.s. There are actually 5 doctors in the group. Each has their own specialties, so be sure to ask which one you should see if you have other concerns, such as Crohn's (they do have one that specializes in Crohn's.) Blessings to you on your journey to wellness!

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Just found a great doctor in rural Okeechobee area. I moved from Boston with my husband. They have diagnosed me with IBS for a long time but kept getting cramps, bloating and diarrhea inspite of taking probiotics . 

My TTG and other antibodies have been normal but my EgD with biopsies came back positive this time. 

This doctor kept telling me he thought it's not IBS - he was right. Now I am on gluten free diet and asymptomatic. 

If you need a good GI doc around this area, I would recommend him.

 

Dr. Vikram Tarugu www.gastroinflorida.com

 

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
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    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
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    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
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    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
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    Source:
    Alimentary Pharmacology & Therapeutics