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):
  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

My Support Group Meeting Experience


angel-jd1

Recommended Posts

angel-jd1 Community Regular

Last night I went to my first ever support group meeting. The group in town is just getting started and I thought it might be good to participate. I was really excited about finally having a local group. The air was soon let out of my balloon.

Many of the people at the meeting were following so many "old school" rules it was rediculous. When I tried to explain differently to them, they looked at me like I was crazy, instead of taking in the info and learning. There were a few that were very interested, but many just didn't want to hear new things. Not sure why they were even there?!? <_<

What REALLY got me was the local health food store owners were invited to the meeting, which was nice. However, they brought a couple with them who is wanting to start a gluten free bakery. They had brought some products to sample and set them out before the meeting for people to try.

As the meeting went on, the lady of this baking couple goes "so how careful do we need to be if we bake regular items in our store". We explained to her that cross contamination was a huge issue etc etc. She then goes " well then I guess you probably shouldn't eat the products we brought" after many of the people ate them!! :angry: I guess she wasn't so careful with her baking, and pretty much didn't do any research before baking these for the group and even putting a label on them that says "GLUTEN FREE". She basically poisoned any person who had tried her products at that meeting! I was flabbergasted at their lack of concern and lack of research before attempting to feed people a products. Especially when they are running a busisness. Crazyness!!

I had collected samples from a TON of manufacturers or I probably would have been over at that table trying their "goodies". I was at my table making sure everyone got samples of all the things that I brought. I'm so glad that I was busy, I can't afford to be sick for a week due to the stupidity (or not being educated) of others.

The whole meeting thing wasn't what I had hoped it would be. It was a let down. I think, no i'm sure, I get more out of the information online than I EVER would in a support group meeting.

-Jessica :rolleyes:


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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator
However, they brought a couple with them who is wanting to start a gluten free bakery. They had brought some products to sample and set them out before the meeting for people to try.

As the meeting went on, the lady of this baking couple goes "so how careful do we need to be if we bake regular items in our store". We explained to her that cross contamination was a huge issue etc etc. She then goes " well then I guess you probably shouldn't eat the products we brought" after many of the people ate them!!  I guess she wasn't so careful with her baking, and pretty much didn't do any research before baking these for the group and even putting a label on them that says "GLUTEN FREE". She basically poisoned any person who had tried her products at that meeting! I was flabbergasted at their lack of concern and lack of research before attempting to feed people a products. Especially when they are running a busisness. Crazyness!!

Wow--that's absolutely ridiculous. Really sorry to hear that the meeting didn't turn out that well.

darlindeb25 Collaborator

angel--i had a similiar experience--well, kind of--my 1st support meeting was filled with very kind people and all very knowledgeable about celiacs--the problem was they made pizza and single serving cakes, which were very good, but something must of had soy or corn flour in it because i was very ill by morning and even though i know it was no fault of theirs, i feel discouraged over going to these meetings--i just dont know what i think anymore :unsure: i will probably go back, i dont know--i feel guilty if i dont try things and i worry that if i do i will get sick--dont know :huh: deb

angel-jd1 Community Regular

I had the very same feeling. I didn't eat their "home baked" goodies that the other members brought either. I didn't feel safe eating them after talking to them and learning how far behind in "up to date" information they were. I was scared that I would end up sick.

-Jessica :rolleyes:

MySuicidalTurtle Enthusiast

One time my group had a cooking class at a health food store and for most they made a variety of each thing. . .it was nice because it allowed everyone to try something.

  • 1 month later...
VegasCeliacBuckeye Collaborator

FYI,

At these meetings, make sure name tags are used that also list all of your allergies/intolerances.

In addition, people need to list all of their ingredients if they bring a dish or potluck to the event.

Any other action is negligent and dangerous.

  • 4 weeks later...
coeliacinfostand Newbie

In Australia the Australian Food and Grocery Council have published guidelines for the manufacturing of food for people with alergies. I often make a point of ensuring bakeries, restaurants, etc who sell gluten free food have a copy of it. There is a link to it:

"Manufacturing & Handling Gluten Free Food (pdf file)"

on my website at:

Open Original Shared Link

as well as several other useful links, mainly applicable to Australia.


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



Celiac.com Sponsor (A8-M):



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. - Scott Adams replied to yellowstone's topic in Coping with Celiac Disease
      3

      Has someone experienced discrimination because of their illness?

    2. - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

    3. - Flash1970 commented on Scott Adams's article in Spring 2026 Issue
      2

      When Home Isn't Safe: Celiac Disease, Cross-Contamination, and the Right to a Gluten-Free Space

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

    5. - suek54 replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      46

      Shaking/Tremors and Off Balance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,941
    • Most Online (within 30 mins)
      10,442

    Sensible
    Newest Member
    Sensible
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • Scott Adams
      Regarding the discrimination you asked about, it is a lot more easy now to discriminate when you're supposed to answer whether or not you have celiac disease on job applications, and from what I've seen, MANY companies now include this question on their applications:  
    • Russ H
      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
×
×
  • 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.