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

Ft. Myers Support Group


twin#1

Recommended Posts

twin#1 Rookie

I am new to this whole idea of leaving a message on a website for virtual strangers to view, but I am betting that there are a lot of people out there who are going through very similar situations. I was diagnosed with celiac-sprue last year. At the age of 45 it answers SO many things however it has competely altered my life, and that of my family. My 16 year old daughter also has celiac disease. For a teenager, this diagnosis is challenging however through friendships at church and school she is handling it fairly well.

I would like to start a support group in Ft. Myers, FL if anyone else out there is interested.

Kelly


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



Celiac.com Sponsor (A8-M):



writer ann Newbie
I am new to this whole idea of leaving a message on a website for virtual strangers to view, but I am betting that there are a lot of people out there who are going through very similar situations. I was diagnosed with celiac-sprue last year. At the age of 45 it answers SO many things however it has competely altered my life, and that of my family. My 16 year old daughter also has celiac disease. For a teenager, this diagnosis is challenging however through friendships at church and school she is handling it fairly well.

I would like to start a support group in Ft. Myers, FL if anyone else out there is interested.

Kelly

writer ann Newbie
I am new to this whole idea of leaving a message on a website for virtual strangers to view, but I am betting that there are a lot of people out there who are going through very similar situations. I was diagnosed with celiac-sprue last year. At the age of 45 it answers SO many things however it has competely altered my life, and that of my family. My 16 year old daughter also has celiac disease. For a teenager, this diagnosis is challenging however through friendships at church and school she is handling it fairly well.

I would like to start a support group in Ft. Myers, FL if anyone else out there is interested.

Kelly

I am writing an article on celiac for a Naples, FL newspaper. If you or anyone reading this in SW Florida would like to contribute info to the article, please contact me ASAP at email: writerannak@yahoo.com Deadline - 04-16-08. Thanks and best wishes,

Ann

VegiacFTM Newbie

I would love to start a support group.

Keep me posted!

gfgypsyqueen Enthusiast

I think a support group is over due for this area. I bet Ada's would let you put an add in the paper or hand out flyers on the gluten-free weekend. Regardless, keep me posted on when and where.

twin#1 Rookie
I would love to start a support group.

Keep me posted!

twin#1 Rookie
I would love to start a support group.

Keep me posted!

I am so glad to know others are out there and interested. Are there any days/nights that are better for you? I am going to be looking for a central place for us to meet. Right now I know of 3 people who are interested however I have a feeling that once I talk with the manager at Ada's there will be more.

TTYL,

Kelly


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



Celiac.com Sponsor (A8-M):



twin#1 Rookie
I think a support group is over due for this area. I bet Ada's would let you put an add in the paper or hand out flyers on the gluten-free weekend. Regardless, keep me posted on when and where.

That's a great idea. I will go to Ada's this week and see what I can find out. Right now there are about 3 people interested however I have a feeling after posting something at Ada's there will be more. I will let you know what happens.

TTYL,

Kelly

VegiacFTM Newbie
I think a support group is over due for this area. I bet Ada's would let you put an add in the paper or hand out flyers on the gluten-free weekend. Regardless, keep me posted on when and where.

There is a "gluten-free weekend" at Adas? Details please. =)

gfgypsyqueen Enthusiast

Assuming you know where Ada's is located. Colonial and 41.

The first weekend of the month is 10% off and food tastings (for gluten heads :P )

The second weekend of the month they have tastings of gluten-free foods! That has been so helpful in finding what my gluten-free/CF toddler will eat!

Looking forward to a local suport group.

twin#1 Rookie
Assuming you know where Ada's is located. Colonial and 41.

The first weekend of the month is 10% off and food tastings (for gluten heads :P )

The second weekend of the month they have tastings of gluten-free foods! That has been so helpful in finding what my gluten-free/CF toddler will eat!

Looking forward to a local suport group.

Hi there,

I am going over to Ada's 2morrow. I will be @ JoAnns taking sewing lessons with my daughter so I'll stop over and inquire about posting something for a support group. I will let you know what they say.

Looking forward 2 meeting you and seeing where this goes.

Kelly

twin#1 Rookie

I checked Ada's out and they will allow me to post info there. I'm not sure about using them as a meeting place because it can be noisy. I did go and check out McAllisters restuarant over by Bealls and they have a room that can be used. I spoke with one of the managers and he told me that when ever we want to meet just to call and secure the room. I spoke with him about a gluten free menu a while back and he contacted the corporate office and they are supposedly working on one.

Anyway, that's where I'm at with a support group so far. I've never started one, but there's a 1st time for everything.

If anyone is interested please let me know and even if it's just 2-3 to start with I think that's great. I recently quit my job so I am available most days and evenings.

Let me know who is interested and we will go from there.

TTYL,

Kelly

gfgypsyqueen Enthusiast

I'd like to know when you get a meeting together. I just don't have the time to start one, but it is really needed. My family also has food allergies. When the kids meet other kids who are "like them" it makes a world of difference.

Feel free to PM for more info.

VegiacFTM Newbie

I definitely want to be part of the group.

Weekends work best for me.

teachbgmomdesign Newbie

Kelly,

Have you begun your support group? We just had our first meeting here in SC and we had 8. It was great! I had an outline to follow, but everything went well--people were so eager to share. Let me know what your group is doing. This month, we are having a Scavenger Hunt throughout the store where we meet! We're hoping to introduce one another to new items that would "expand our gluten-free horizons!"

Bev

twin#1 Rookie
Kelly,

Have you begun your support group? We just had our first meeting here in SC and we had 8. It was great! I had an outline to follow, but everything went well--people were so eager to share. Let me know what your group is doing. This month, we are having a Scavenger Hunt throughout the store where we meet! We're hoping to introduce one another to new items that would "expand our gluten-free horizons!"

Bev

Hi Bev,

We haven't had a meeting yet. It has only been a week or 2 and I was so excited to see the response. I've never done anything like this. You had an outline to follow? Maybe you can give me some advice on which way to go with this. It's interesting that you are meeting in a store. Is it a health food store? I had originally thought to steer away from that since I thought some people might want to share things that may be of a sensitive nature but looking at your post I may rethink that. A scavenger hunt is a great idea.

You are in South Carolina?

Thanks for the encouragement,

Kelly

  • 2 weeks later...
lisabarella Apprentice
I am writing an article on celiac for a Naples, FL newspaper. If you or anyone reading this in SW Florida would like to contribute info to the article, please contact me ASAP at email: writerannak@yahoo.com Deadline - 04-16-08. Thanks and best wishes,

Ann

Ann,

I just came across your posting on the Celiac.com message board. I am actually conducting a study on Celiac Disease, Physical Activity, and Cognitive Performance for my dissertation. I am going to be in Naples, FL May 22nd - 29th testing people. Give me a call if you would like to talk and/or if you could include my information in your article.

Best,

Lisa

---------------------------------------------------------

Lisa A. Barella

4th Yr. Doctoral Student in Exercise & Sport Psychology

Graduate Research and Teaching Assistant

Department of Exercise and Sport Science

The University of North Carolina at Greensboro

Room 250 HHP Building, Greensboro, NC 27402

Email: lisabarella@hotmail.com

Phone/Cell (with VM): (336) 253-5539

Fax: (336) 545-4486

  • 2 weeks later...
lucy lou Newbie
I am writing an article on celiac for a Naples, FL newspaper. If you or anyone reading this in SW Florida would like to contribute info to the article, please contact me ASAP at email: writerannak@yahoo.com Deadline - 04-16-08. Thanks and best wishes,

Ann

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,920
    • Most Online (within 30 mins)
      7,748

    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.