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About Jenn2006

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  1. 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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