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

Support Groups

tammy

By tammy
in Introduce Yourself / Share Stuff

Recommended Posts

tammy Community Regular
tammy
Posted

Hi all of you courageous people!

I am considering to start my own support group but I thought it best to get feedback from others before I finalized my decision.

I would appreciate your input on support groups for people with gluten and/or casein sensitivity.

Thank You!

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

Celiac.com Sponsor (A8-M):


burdee Enthusiast
burdee
Posted

My local celiac support group helped me sooooo much to learn about celiac disease, safe and unsafe foods, celiac friendly resturants, as well as meet supportive friends. When I first discovered I had celiac disease our group leader often listened to my frantic calls and emails (when I was confused and scared about 'slips') and reassured me that I would eventually learn the gluten-free approach and get healthy. Now I have the opportunity to give other 'newbees' to our group helpful information and encouragement.

If you want to start your own group, considering contacting www.gluten.net for the Gluten Intolerance Group local office in your area or www.csaceliacs.org for the local chapter of the Celiac Sprue Association. One or both of those organizations may give you support and information about starting your own local celiac group.

Although I don't lead my local celiac disease support group, I keep our membership roster and handle publicity for our meetings and correspond with gluten-free product companies to obtain free samples of their products for our group meetings. I have facilitated other 'eating habit' groups at my church, so I'm experienced in leading groups. Feel free to write me at penguinea@hotmail.com for ideas about starting and advertising your local celiac disease support group. :)

BURDEE

tammy Community Regular
tammy
Posted
  • Author

Thank you very much for your comments!

  • 3 weeks later...
katrinca Newbie
katrinca
Posted

Tammy,

I'm thinking of starting a celiac support group here in Denmark. Just moved here, and there are essentially now resources for us, so I'm thinking about starting my own.

I've been gluten free for 2 years, and I've learned so much about celiac disease, but I still don't really feel qualified to start my own group.

Any further leads or advice would be much appreciated!

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time. This makes it very hard for the body to absorb and utilize it. Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down. Thiamine Hydrochloride is great. Benfotiamine is wonderful, too. Retaining...
    2. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      Thanks again, I'll keep pressing on. 🤞
    3. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient". It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light. If not absorbed, excreted. Absorption of riboflavin will improve...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are...
    5. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins. I am 10-days into taking this already. My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day. I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,594
    • Most Online (within 30 mins)
      7,748
    Deedeewhiteside
    Newest Member
    Deedeewhiteside
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • 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.