Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Shands Medical Center At U Of Fl (gainesville)

marciab

By marciab
in Doctors

Recommended Posts

marciab Enthusiast
marciab
Posted

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

Thanks ... marcia

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi Marcia :)

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

eleep Enthusiast
eleep
Posted

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.

marciab Enthusiast
marciab
Posted
  • Author

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 ?

Jenn2006 Newbie
Jenn2006
Posted

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

marciab Enthusiast
marciab
Posted
  • Author

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

eleep Enthusiast
eleep
Posted
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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


marciab Enthusiast
marciab
Posted
  • Author

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

marciab Enthusiast
marciab
Posted
  • Author

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,860
    • Most Online (within 30 mins)
      7,748
    Rena Celiac
    Newest Member
    Rena Celiac
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.