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. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

    2. - Jordan Carlson posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fruits & Veggies

    3. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

    4. - Tanisha L commented on Scott Adams's article in Kids and Celiac Disease
      1

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    5. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

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

    • Total Members
      132,997
    • Most Online (within 30 mins)
      7,748

    IwannabHealthy
    Newest Member
    IwannabHealthy
    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

    • 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!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
×
×
  • 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.