Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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


lonewolf

Recommended Posts

lonewolf Collaborator

I am not a member of a support group, but am interested in starting one informally. We have a large health food store in the area (Federal Way, WA) that has a "Seminar room" and would probably be open to hosting meetings. I would love to get a group going just to get together to talk, share recipes, whine, etc., but don't have the time to do a big website or do a lot of organizing. We are fairly close to Tacoma, WA, and I know that there is a support group there, but would love to have something more local for people like me who have a family and a job and not much extra time.

Any suggestions? Has anyone else started an informal group?

Thanks,

Liz


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



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

Maybe you could contact Danna Korn. She runs the group R.O.C.K. which is all over the country now. It's about raising celiac disease kids, so maybe not for you, but she may give you advice on what you need to do. Google her or a link to her web site is here somewhere. Plus, she responds. Very nice. AAAANNND, she does the celiac disease walks every May. You could organize a walk sponsered by ROCK this year!!!!!!

Guest nini

I agree, Dana Korn is an awesome lady! She's so nice to talk to and full of ideas! I was thinking about starting a ROCK chapter in my area but someone else beat me to it! That's cool though cos now I don't have to be "in charge"!!!! She has such a sweet personality and loves to help.

I would think that starting one through a local Health Food Store would be a great idea, in fact the HFS I shop at, has toyed with the idea for a while, I may still help them with that. Also GIG (Gluten Intolerance Group) is another resource for starting a local support group.

tammy Community Regular
I am not a member of a support group, but am interested in starting one informally. We have a large health food store in the area (Federal Way, WA) that has a "Seminar room" and would probably be open to hosting meetings. I would love to get a group going just to get together to talk, share recipes, whine, etc., but don't have the time to do a big website or do a lot of organizing. We are fairly close to Tacoma, WA, and I know that there is a support group there, but would love to have something more local for people like me who have a family and a job and not much extra time.

Any suggestions? Has anyone else started an informal group?

Thanks,

Liz

Hi Liz,

I plan on starting an informal group after the New Year. I would love to hear how your group progresses. BEST WISHES!

burdee Enthusiast
I am not a member of a support group, but am interested in starting one informally. We have a large health food store in the area (Federal Way, WA) that has a "Seminar room" and would probably be open to hosting meetings.

Hi Liz:

I lead a celiac support group in Bothell, WA. I assumed leadership of that group from another gal who just started meetings at Kaili's Kitchen, a totally gluten free restaurant in Edmonds. Hers was NOT an offical GIG or CSA group, but was well attended. I began leading in August after attending that group for awhile. I would LOVE to answer any questions you might have about leading a support group. We REALLY NEED a south end group. Some of our members drive from Federal Way. I know there are people in the Puyallup and Auburn areas who would like to attend a south Puget Sound group. You can either send me a PM or email. If you'd like to attend one of my group meetings, we meet on Second Tuesdays of every month.

BURDEE

mytummyhurts Contributor

I would come if you started one. I live in Puyallup. I had posted that I wanted to start one, but I'm afraid I've been sick with other issues and won't have the energy to plan, etc. Let me know please.

Generic Apprentice

I am interested also, I recently moved to Lakewood, from Puyallup/Tacoma area.


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

I will let you know when I get something organized. I am going to another support group to see how it works, will be talking to the owner of the health food store in Federal Way, and then start getting the word out. My cousin and a good friend both have Celiac, so that would make at least 5 of us, right? If nothing else, we could just get together for moral support, vent and to exchange cooking tips.

Liz

mytummyhurts Contributor

Sounds perfect to me. I like the idea of something informal with just a small group. I've heard about the really big groups and that sounds to impersonal to me.

  • 2 months later...
Judyin Philly Enthusiast
I will let you know when I get something organized. I am going to another support group to see how it works, will be talking to the owner of the health food store in Federal Way, and then start getting the word out. My cousin and a good friend both have Celiac, so that would make at least 5 of us, right? If nothing else, we could just get together for moral support, vent and to exchange cooking tips.

Liz

SAW YOU POSTED IN DEC

HOW IS YOUR SUPPORT GROUP COMING.

WE'RE STARTING ONE IN MAY

ANY TIPS.

JUDY IN PHILLY

amybeth Enthusiast

Judyinphilly -- what are your plans for May? I'm in Bucks County -- participate in greater phila. celiac group, but they only meet 2X per year. Would love to know what you are thinking of.

lonewolf Collaborator
SAW YOU POSTED IN DEC

HOW IS YOUR SUPPORT GROUP COMING.

WE'RE STARTING ONE IN MAY

ANY TIPS.

JUDY IN PHILLY

The local health food store didn't have an opening in their meeting room when it worked for me. They have it reserved for a group called "The Ghost Chasers" or something. I'll try again in late spring. I've ended up so busy with my 4 kids, teaching part-time, coaching basketball and cooking that I haven't had a chance to look for another place. Hope your group turns out well!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,471
    • Most Online (within 30 mins)
      7,748

    Fabrizio
    Newest Member
    Fabrizio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @NCalvo822! Ditto to what Scott said. But let me ask you, what method or methods did your physician use to diagnose you as having celiac disease? Normally, it is a two step process. The first step involves a blood test that looks for certain antibodies produced by celiac disease. The second step involves an upper GI scoping and biopsy of the small bowel lining to check for the damage to the lining typically caused by celiac disease. This second step is used as confirmation of the blood work when the antibody testing turns up some positives. Occasionally, positive antibody tests scores can be caused by things besides celiac disease. Which of these were done or did you have both done before the doc declared you to have celiac disease?
    • Scott Adams
      Thanks for sharing this info! Frustrating to see companies who haven't used wheat as an ingredient start to do so! https://blistex.com/product/five-star-lip-protection/
    • Emily P.
      As of July 2025, Blistex is no longer gluten free for their five star protection lip balm The last ingredient is WHEAT! From Blistex' website, ingredient list for 5 Star Protection;: "Inactive Ingredients: bis-diglyceryl polyacyladipate-2, bis-stearyl dimethicone, butyloctyl salicylate, C12-15 alkyl benzoate, calendula officinalis extract, caprylic/capric triglyceride, carthamus tinctorius (safflower) seed oil, cetyl dimethicone, citric acid, euphorbia cerifera (candelilla) wax, flavor, microcrystalline wax, myristyl myristate, octyldodecanol, oryzanol, ozokerite, panthenol, phenoxyethanol, sorbic acid, stearyl behenate, sucralose, tetrahexyldecyl ascorbate, tocopheryl acetate, triticum vulgare (wheat) germ oil"
    • knitty kitty
      I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.   I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile. Here's the tests you can get for Celiac antibodies...  
    • knitty kitty
      @Ginger38, I'm with you!   I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.   Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!   I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication. Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!
×
×
  • Create New...