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

Need To Find Celiacs In My Area


dark wolf

Recommended Posts

dark wolf Newbie

Hello, I am a beginner at computers I can not figure out how to use this space. All I wanted is to be able to meet people in my area with celiac. I would just like to be able to talk or make friends with someone who understands. Non-celiacas think they understand or the opposite & tell me I use as an excuse to not participate. If any one is willing to expain this site and how it works. Can you accually type back and forth with people?? Please e-mail me @ crt491@yahoo.com I am in central florida

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

Thanks.


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



Celiac.com Sponsor (A8-M):



Jamilah Rookie

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

No problem eating w/ someone eating gluten---it doen't cc to that extent. Wooden and plastic dishes can retain gluten, but other dishes/glasses are fine. It's good to be careful, but you can't live in a bubble.

Cheers---

Vrazel Newbie
Hello, I am a beginner at computers I can not figure out how to use this space. All I wanted is to be able to meet people in my area with celiac. I would just like to be able to talk or make friends with someone who understands. Non-celiacas think they understand or the opposite & tell me I use as an excuse to not participate. If any one is willing to expain this site and how it works. Can you accually type back and forth with people?? Please e-mail me @ crt491@yahoo.com I am in central florida

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

Thanks.

Hello. I do not know how to use this either but I live in P'cola, Florida and was just diagnosed with celiac. My daughter was diagnosed first in Atlanta and the doctor said I must be the carrier so I went to Atlanta and had the biopsy and that confirmed it. I am also a diabetic. This is very hard for me. My daughter has stuck to the gluten free diet and it has made the biggest difference in her life. I have been very sick for a long time, diagnosed with fibromyalgia, crohn's disease, asthma, acid reflux, iron deficient anemic, B12 is low, been losing hair, gained weight, have sleep aepnea, etc. My doctors in Pensacola told me I did not have celiac. I kept losing blood, staying tired and I was very depressed. The doctors in Atlanta have helped me. I am hoping to find a support group in Pensacola, Florida, or nearby. I am just newly diagnosed and don't quite understand how easy it is to cross contaminate. My son and daughter in law do not feel celiac is anything to worry about. They feel I should worry more about taking care of my diabetes.

taylor- Rookie

Hey there...there are a ton of people from florida here! I'm from Bradenton (below Tampa) but Im in Tallahassee now for school.

You should definitly look into a support group! https://www.celiac.com/st_prod.html?p_prodid=310

Even though this place could pretty much answer any questions you might have...its so great to have those people close to home. if you have any questions I would be happy to help..if i can..my email is tbv07@fsu.edu

Good luck!

  • 3 weeks later...
ackdavis Rookie

First, it's tough feeling isolated, nobody understands your basics to live freely. There is a lot of help on the Internet. And in person. There are lots of us who do well gluten-free and who pitch in to help actively.

Do try Open Original Shared Link to find a group near you for information and support. There are others: GIG, CSA so snoop around until you find what fits you best. Check out Open Original Shared Link and print out what you need to inform your friends? - gotta wonder if they are friends saying things like that - and family. Gluten Free Works site Open Original Shared Link has real simple Diet Cards which you can show off to anyone, to help them understand. Since they are sompact and preprinted, they look official but more importantly, they are accurate. Celiac sites for Travel have cards you can download but they aren't as detailed.

You know you are doing the right thing in sticking to gluten-free, for your well-being. I find I can do much more with a positive attitude and a smile than when I sound negative so I try to always approach the unknowing as if I am helping them. Seems to work for me.

Try Open Original Shared Link and celiac chicks site too. They have lots to say in a good manner, all that helps gluten-free and Celiacs everywhere and with a social context.

Best of fortune! The more we get our word out about how easy it it to mess up a simple plate, the better for you and for all of us! Our eats are delicious! Others should have as much variety in their diets as we do.

B)

Hello, I am a beginner at computers I can not figure out how to use this space. All I wanted is to be able to meet people in my area with celiac. I would just like to be able to talk or make friends with someone who understands. Non-celiacas think they understand or the opposite & tell me I use as an excuse to not participate. If any one is willing to expain this site and how it works. Can you accually type back and forth with people?? Please e-mail me @ crt491@yahoo.com I am in central florida

Also interested in how to make people understand how easy it is to cross contaminate. Like how I can't share a drink w/ someone eating glutenous foods, and cookware. I swear people really think Ive gone over the edge to exclude my self including my family!!

Thanks.

mamaw Community Regular

Hello & welcome

First off I'm not from Florida but you can learn so much from this site. I'm not good at this computer thing either so don't let that stop you...

I think you are asking how to navigate around this site? If you wish to answer a thread or message just hit the relpy button & post you response.If you want to post a new question , hit new topic in the section that best fits your question. Ie: a recipe ? would be placed in the cooking section.

You also will see an option choice, if you would like to be notified when someone answers your ? just click on immediate notification & it will let you know someone has answered.

There are many topics as Doctors, Cooking,& so on then when you click on a topic all the ???'s appear & you can read the ones that interest you. They go on forever.

I will tell you that you will learn more right here than most doctors could ever tell you. The recipes are wonderful & alot of sharing & caring takes place here.

I hope this was what you were asking.....

Please ask questions because everyone here will help you.....

blessings

mamaw

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. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    2. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    3. - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

    4. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,315
    • Most Online (within 30 mins)
      7,748

    RickT
    Newest Member
    RickT
    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

    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • 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.