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

lonewolf

By lonewolf
in Introduce Yourself / Share Stuff

Recommended Posts

lonewolf Collaborator
lonewolf
Posted

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
Jnkmnky
Posted

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
Guest nini
Posted

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
tammy
Posted
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
burdee
Posted
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
mytummyhurts
Posted

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
Generic
Posted

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
lonewolf
Posted
  • Author

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
mytummyhurts
Posted

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
Judyin Philly
Posted
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
amybeth
Posted

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
lonewolf
Posted
  • Author
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748
    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.