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marciab

Shands Medical Center At U Of Fl (gainesville)

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Does anyone have any info on the GI doctors at Shands ? Would you recomend going there ?

Thanks ... marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Celiac.com Sponsor (A8):

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Hi Marcia :)

Sorry, don't know about this center, but I wanted to bump this up--maybe today someone will! :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I wish I could help you -- Shands has an excellent reputation, but I don't know any of the GI doctors there -- I'm a student at UF, but I was referred out to someone in private practice by the infirmary here.


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

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Thanks. My GP wants me to go there since we don't have anyone around here who deals with this.

I'm going to ask people at my support group meeting on Sunday too ...

I was excited about finally getting a diagnosis and some direction, but then I realized that they are going to poke me with needles and run some unpleasant medical tests on me. :(

marcia

Erica, just in case, Can you please tell me who you saw in Gainesville ? Did you like him / her ?


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Hi. My husband was dx with Celiac by a biopsy first. Then he was refered to Dr. Valentine at Shands University in Gainsville. He is the head Doctor and Researcher for the Gastro division. He felt the biopsy must be wrong because no one in my husbands family had been dx with Celiac before. He had a repeat endo/biopsy there at Shands and it came back as possible bacterial overgrowth or treated celiac. They ruled out the bacterial overgrowth with a test there at Shands but he still didn't belive it could be Celiac. By the point my husband had his first appt. at Shands he had been on the gluten free diet for about 2 1/2 months. He had been very sick before the first dx and starting the diet so he hadn't shown much response to the diet at the first appt. After several months of going back and forth to Shands and being told that it wasn't Celiac even though he had 2 positive biopsies even after 2 1/2 months on a gluten free diet we decided to go else where.

By the way during these trips to Shands that took us 4 hours to get there (I believe we had 6 appts) we only saw the doctor the first time. He never re-evaluated him or checked his vitals or weight after the first appt.

All the other appts were for test he decided to run from phone conversations. During the time from the first appt. to the last my husband had lost another 28 pounds and Dr. Valentine was still basing all of his test and dx from the information from his first visit. He didn't even pay much mind to the information I provided to him about how much better he was doing on the gluten free diet and even though he hadn't made great improvements when he did the gluten challenge for the endo at Shands he became very sick from it.

Dr. Valentine also told me that if he ate gluten for 3-5 days it would be enough to show up on the endoscopy even though he had been gluten free for 2 1/2 months. I questioned that information because I had read several times that for a gluten challenge you should consume gluten for at least 3 months regularly.

Anyway my husband is doing much better he is now right at a year gluten free. He is definately not back to normal or his old self but he is much much better. We knew the diet was the right thing for him to do. He never cheats although he has gotten c/c and it makes him sick every time. He gets vitamin injections every other week for B12 and sees his GP every 4 months for routine bloodwork. He did have elevated liver enzymes for a while but those have gone back to normal with the continued diet.

My husband also had a positive test from Entrolab for Celiac gene and antibodies for whatever its worth.

Hope you have a good experience. I know it is a wonderful hospital my step dad is being treated for cancer there and they are wonderful to him. Every tech that did a test on my husband was wonderful and very caring also. I just think they are very in the box thinking about Celiac. During his endoscopy every doctor nurse, and tech that came to talk to him automatically thought he was there for Chrons Disease or Colitits because thats what they primarily see.

Good luck. Hope you find some answers and a good doctor.

Jennifer

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WOW ... Thank You ...That's exactly what I was wondering about. Only someone who has been there for celiac knows how up to date someplace is on the disease.

Sorry to hear you had such a bad experience. Glad to hear you husband is doing better :)

Not much point in going if they are not up on the disease or willing to take into consideration a positive result from the gluten-free diet.

It looks like you were there 9 months ago, any chance they have improved ? marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Erica, just in case, Can you please tell me who you saw in Gainesville ? Did you like him / her ?

I saw Enrique Molina, who's with Digestive Disease Associates in Gainesville. I can't really say whether I'd recommend him or not since, after my blood tests came back negative, he basically recommended that I try the diet and that was it. He didn't seem to be one of those "I only accept the Gold Standard" doctors, but I can't say for sure. Since I'm a student on a really limited health plan right now, I decided I was lucky not to have to deal with/pay for an endoscopy -- although I did end up ordering Enterolab tests when the diet started to have dramatic good/bad effects on my body and I needed more reassurance that I was doing the right thing.

eleep


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

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Erica,

Thanks. I know what you mean about not having to deal with/pay for the endo. I may end up just having to accept that the diet is working for me too.

My only concern is the complications from years of untreated celiac. I think this is why my GP wants me to go too ....

My doc also asked about the Mayo in Jacksonville, FL. Has anyone been there ? Did I read somewhere that Mayo has a celiac center in Minnesota ?

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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I asked people at my support group mtg on Sunday about Shand's and two of them said that they had had a good experience, but since I was already gluten free they could not do a biopsy.

They also said that we do not have any doctors locally who deal with this.

Bummer ... marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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