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Newly Diagnosed In Florida!

Tori F.

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Tori F. Newbie
Tori F.
Posted

Hi Everyone,

My name is Tori and I have been diagnosed with Celiac for about a month. I have a wonderful husband and two small children. I live in Macclenny, FL and I travel to Jacksonville three to four times a week. I am looking for some local friends to maybe start up a support group. Does one exsist already? I am feeling a little overwhelmed and starting to get frustrated. I am scrared to eat anything unless it says "Gluten Free" on it. I would love to make some new friends dealing with the same thing I am. Thanks! Tori

  • 2 weeks later...
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Janelle Newbie
Janelle
Posted

:D Hi There Tori,

I too am recently diagnosed celiac disease and having a very confusing time. Sounds as though I am much older than you, but I am sure we have the same goals in mind. Getting through this celiac disease life, right?

ShayFL Enthusiast
ShayFL
Posted

Hi Tori!

I am one month in as well. I live in Tampa FL. But I have a niece in St. Augustine that I visit from time to time.

  • 2 weeks later...
katebuggie28 Apprentice
katebuggie28
Posted

Hi there. I am new to this too. (6 days) I used to travel to Baker county often. (glen st. mary / macclenny/sanderson) Are you near 125?I live near Orlando, but I plan on making a trip up that way soon, so hopefully you/we can find a few people to form a support group. I know it is very small town there, but I am sure that there are others in that area that can relate. Good luck

katebuggie28 Apprentice
katebuggie28
Posted
Hi Everyone,

My name is Tori and I have been diagnosed with Celiac for about a month. I have a wonderful husband and two small children. I live in Macclenny, FL and I travel to Jacksonville three to four times a week. I am looking for some local friends to maybe start up a support group. Does one exsist already? I am feeling a little overwhelmed and starting to get frustrated. I am scrared to eat anything unless it says "Gluten Free" on it. I would love to make some new friends dealing with the same thing I am. Thanks! Tori

Open Original Shared Link

they have a group in Jax. Hope this helps.

CarolAnne Apprentice
CarolAnne
Posted

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.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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