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Tallahassee/north Florida


might

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taylor- Rookie

Hey! so its been almost 2 months..only one more home football game left and i ran into somebody that has celiac today..again..so i thought we should start talking about this again.

we should try and get something going!

(hope you all did super on your midterms! haha)


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MedicMan Newbie

Has anyone started a celiac disease support / discussion group here in Tallahassee. I'm a resident of Tallahassee and am scheduled to start grad school in January at FSU. I was dignosed with celiac disease just recently and would love to talk with others here in town. It has been a tough year and having some friends to share with and learn from would be outstanding. I'm willing to host a meeting at my home, in is in the Chaires area on the east side of town. I've got lots of room for parking, sitting, and talking. We are also a gluten free household.

Please advise,

Thanks,

MedicMan

taylor- Rookie
Has anyone started a celiac disease support / discussion group here in Tallahassee. I'm a resident of Tallahassee and am scheduled to start grad school in January at FSU. I was dignosed with celiac disease just recently and would love to talk with others here in town. It has been a tough year and having some friends to share with and learn from would be outstanding. I'm willing to host a meeting at my home, in is in the Chaires area on the east side of town. I've got lots of room for parking, sitting, and talking. We are also a gluten free household.

Please advise,

Thanks,

MedicMan

hey! so we were talking about it at the beginning of the year, and there are defintely people interested, but with football season and everything it was sort of hard to get a weekend. I think we should do something though!

  • 2 weeks later...
GFinNC Newbie
hey! so we were talking about it at the beginning of the year, and there are defintely people interested, but with football season and everything it was sort of hard to get a weekend. I think we should do something though!

I have just been accepted to a Ph.D. program at FSU, starting in January. I'm very excited, although a bit nervous because of living with Celiac.

I don't know anything about Tallahassee. I've only visited Florida twice (Orlando, both times). Is there a Whole Foods or other specialty grocery store? I frequent Outback and Carrabba's for my special "eat-out nights" with friends.

Any info about living gluten-free or Tallahassee in general is more than appreciated!!

Guess I'm trading in my Hokie gear for some 'Noles stuff! :P

  • 4 months later...
Jeff Swartz Newbie
Has anyone started a celiac disease support / discussion group here in Tallahassee. I'm a resident of Tallahassee and am scheduled to start grad school in January at FSU. I was dignosed with celiac disease just recently and would love to talk with others here in town. It has been a tough year and having some friends to share with and learn from would be outstanding. I'm willing to host a meeting at my home, in is in the Chaires area on the east side of town. I've got lots of room for parking, sitting, and talking. We are also a gluten free household.

Please advise,

Thanks,

MedicMan

Let me know If i can do anything to help this process along. We really need a good support group. I have been a tallahassee boy for a looooong time [moving here with my family from Arizona in 1957]. Let me hear from you if you get a group together.

After I was diagnosed, my doctor tested a number of other patients. I was his first case ever.] Now he has a number of Celiac patients, also looking for a group. His name is John Ness, and might be willing to help out too.

Let me hear from you

Jeff Swartz

  • 5 weeks later...
RockHammer Rookie

I have spoken to Dr John Ness in Tallahassee about starting a support group in Tallahassee. He has offered the use of his waiting room on an evening or weekend. Anyone interested in joining in, give me an email here, or at jswartz.pg@gmail.com. We need a support group in this town.

Also, anyone in the Tallahassee area, Dr Ness is not a specialist. He is the Best, however.

RockHammer

taylor- Rookie

thats awesome!! im most definitely interested, and can do anything to help out with it. i actually was just talking to my Intro. to Dietetics teacher in class last friday about whether or not she had any patients with Celiac and getting a group started. Let me know if you need any help!


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RockHammer Rookie
thats awesome!! im most definitely interested, and can do anything to help out with it. i actually was just talking to my Intro. to Dietetics teacher in class last friday about whether or not she had any patients with Celiac and getting a group started. Let me know if you need any help!

Anouncing an orginizational meeting for a Celiac Support Group for the Tallahassee "Area. Next Saturday April 26, 2008 at 2 PM at the office of Dr John Ness 616 Universal Dr, Tallahassee FL.

From downtown Tallahassee go north on Monroe St. Turn Left on Universal Drive (at chik-fl-a). On Right Side at end of street. for info email jswartz.pg@gmail.com.

SEE YOU THERE

RH

jparsick84 Rookie

Hey guys, Taylor found me on Facebook this morning and sent me the link to check out the board here. I'm so excited to see so many other Celiacs - I'm the only one in my family, and I don't personally know anyone else who has to deal with this, so I can't wait to meet all of you. I moved here from northern VA for grad school about 2 months after I was diagnosed, not knowing ANYONE in Tally and dealing with this strange disease (and, oh yeah, grad school too). I have DH, so luckily most of my symptoms are external and quick (I can tell within 30 minutes if I've eaten something bad), and that's how I was diagnosed so quickly (less than a year from bumps to diagnosis)

And for those who are on Facebook, I started a group called "Celiacs at FSU" if you want to join that too, help keep us all up to date and all. Two things:

1. La Fiesta on the Appalachee Parkway is safe for eating out, as long as you stick to the corn stuff

2. RICE CHEX IS NOW GLUTEN-FREE!!!

Yay!

  • 5 weeks later...
CarolAnne Apprentice

Hello! My name is Carolanne...and I've lived in Florida for over 20 years. I am a Celiac, and I've been Wheat-Free for 20 years, and Gluten-Free for over 3 years. I'm trying to locate people who live Gluten Free here in Florida...and it's not been easy. Most of the links I've found have been disconnected or discontinued...and I'm having a devil of time finding people to connect to. I'd really like to find others who are interested in getting together...and I understand that I am not alone. I've read several posts from people looking for help, Doctors, restaurants, support groups, meetups and such here in Florida.

GlutenFreeInFlorida-subscribe@yahoogroups.com

I've created a Yahoo Group in the hopes of connecting with other people here in the Sunshine State...and to help others connect as well. I'd like to know if anyone is interested in something that will enable you to contact others in your own local area. I'd like to make more information available to people who are living Gluten-Free in Florida.

jparsick84 Rookie

Is the Tally support group meeting through the summer? I haven't heard anything from anyone and just want to make sure I'm not being left out of the loop...

Are any of the students in Tally for the summer? I'd love to meet up with you if you are! :)

taylor- Rookie

im here!!

and i haven't really heard anything, but i would love to start doing something..

  • 4 weeks later...
taylor- Rookie

We are having a support group meeting for Tallahassee and the surrounding area on Tuesday June 24th at 6:30pm. It will be at the office of Dr John Ness.

616 Universal Dr.

Directions: Heading North on Monroe St. Take a Left at Chick-fl-a near the DQ. His office is the second building on the right. It is a short street. You can't miss it.

If you have any questions feel free to ask! (sorry this is really short notice, hopefully we will get more established and have a set day!)

  • 2 months later...
GFinNC Newbie

Did anyone start a Tallahassee or FSU Facebook page? I just did a search and couldn't find anything.

taylor- Rookie
Did anyone start a Tallahassee or FSU Facebook page? I just did a search and couldn't find anything.

Actually...YES!! its called Tallahassee Celiacs...it was just started..everyone go join :)

  • 2 weeks later...
ckitty Newbie

are these support meetings still going on? i just found out i cant have gluten or casein (milk) and would love to get involved in a group in tallahassee. i would like to start a monthly potluck group...

thanks,

carla caison (on facebook too)

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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