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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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    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
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