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

Tallahassee/north Florida


might

Recommended Posts

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)


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



Celiac.com Sponsor (A8-M):



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!


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



Celiac.com Sponsor (A8-M):



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)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

    2. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    3. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

    4. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

    5. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,002
    • Most Online (within 30 mins)
      7,748

    Lsnel
    Newest Member
    Lsnel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal.  Were any other antibody tests run?  
    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
×
×
  • 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.