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

Frustrated In Mn


looking for info

Recommended Posts

looking for info Rookie

I can't begin to explain how frustrated I am today....again another failure....to me there seems to be a lack in resources here in MN when it comes to group settings or support groups. They only meet once a month and I've only been able to make it to 1 out of 3 that I knew of. Today being no exception to me missing it..due to me being directionally challenged ...so again i have to try and make it to the next one only being a month away...I don't know anyone else that has celiac and have been wanting to find someone that I can connect with or someone that might be able to just understand how difficult it is...someone to maybe do something with...someone to talk to...I feel like I'm a burden to those that are around me....I get sick of stupid comments "what a great diet" "you mean you can eat potatoes" "how I can just brush the bread off from the plate and eat everything else"...Does anyone else know of any groups or support here in MN..I just wish I lived somewhere that actually had more resources.


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



Celiac.com Sponsor (A8-M):



bumblebee-carnival Newbie

Have you tried asking at the health food or vitamin store? They may know of something or have something in store. I've met gluten free/celiac people just buy talking to people in the gluten free aisle of the health food store and had great chats.

looking for info Rookie

Have you tried asking at the health food or vitamin store? They may know of something or have something in store. I've met gluten free/celiac people just buy talking to people in the gluten free aisle of the health food store and had great chats.

I really haven't tried that but it gives me a new approach to finding people...I'll give it a try next time I'm out ...thank you for the suggestion...i guess I have to get out of my comfort zone sometimes...

Lisa Mentor

You are at the best place to meet and vent your frustrations. We have all been where you are and many people are on the same road you travel.

Join us! :D

srall Contributor

I am in the Twin Cities. I know our co op has classes for cooking gluten free, but I haven't tried them. I wonder though if something like that would help you connect with others on your same journey. I sort of agree with Lisa. I use this site for info and support more than anything else. A couple of years ago at the State Fair, my husband encouraged me to go to the health building (can't remember the real name) and we found a booth that was run by a group of people with Celiac. Well, at the time I was newly diagnosed gluten INTOLERANT and I felt the woman I was talking to was sort of dismissive. And when I asked her if she had other food intolerances that came along with celiac she said, "Well, no I have celiac so that means I only have to avoid wheat, barley and rye." I just didn't feel any sort of connection or that she was in anyway going through what I was going through. So I think a few days later I found this site and have used it ever since. Of course you don't have the face to face contact. But I read so many posts here and feel as if I could have written them...I feel like maybe I'm not crazy after all. (At least not about food issues.)

Anyhow, I don't know where you are in MN. We travel a lot and I'm telling you that I feel that Minneapolis is one of the easiest places to be gluten free. I feel like there's an awareness in restaurants, I have a couple of Whole Foods by me, and I joined a co op which is my all time favorite place to shop...even more than Nordstroms. :) Where was the meeting you were trying to get to today (if you don't mind my asking)?

rosetapper23 Explorer

The last annual conference of the Gluten Intolerance Group of North America was in Minneapolis, and I was impressed with the level of volunteerism there--apparently, there are a LOT of diagnosed celiacs in Minnesota. Have you contacted the Gluten Intolerance Group (GIG) to see if there are any support groups nearby? Also, have you checked with Meetup.com? I've found dozens of celiacs in my neck of the woods through Meetup.com.

looking for info Rookie

I am in the Twin Cities. I know our co op has classes for cooking gluten free, but I haven't tried them. I wonder though if something like that would help you connect with others on your same journey. I sort of agree with Lisa. I use this site for info and support more than anything else. A couple of years ago at the State Fair, my husband encouraged me to go to the health building (can't remember the real name) and we found a booth that was run by a group of people with Celiac. Well, at the time I was newly diagnosed gluten INTOLERANT and I felt the woman I was talking to was sort of dismissive. And when I asked her if she had other food intolerances that came along with celiac she said, "Well, no I have celiac so that means I only have to avoid wheat, barley and rye." I just didn't feel any sort of connection or that she was in anyway going through what I was going through. So I think a few days later I found this site and have used it ever since. Of course you don't have the face to face contact. But I read so many posts here and feel as if I could have written them...I feel like maybe I'm not crazy after all. (At least not about food issues.)

Anyhow, I don't know where you are in MN. We travel a lot and I'm telling you that I feel that Minneapolis is one of the easiest places to be gluten free. I feel like there's an awareness in restaurants, I have a couple of Whole Foods by me, and I joined a co op which is my all time favorite place to shop...even more than Nordstroms. :) Where was the meeting you were trying to get to today (if you don't mind my asking)?

I did try a gluten free cooking class once but found it difficult to relate...maybe I should try it again cause that was back when I was first diagnosed and I had no clue what I was doing...well even more so then now...Whole Foods has certainly become one of my favorite places to shop that and the Mississippi Market...love the fact that they have a listing and labels on everything...

The group I was trying to get to today was the Celiac Disease Foundation Twin Cities Chapter & Support Group it meets every 3rd Tuesday at the Chanhassen Library...


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



Celiac.com Sponsor (A8-M):



looking for info Rookie

The last annual conference of the Gluten Intolerance Group of North America was in Minneapolis, and I was impressed with the level of volunteerism there--apparently, there are a LOT of diagnosed celiacs in Minnesota. Have you contacted the Gluten Intolerance Group (GIG) to see if there are any support groups nearby? Also, have you checked with Meetup.com? I've found dozens of celiacs in my neck of the woods through Meetup.com.

Too bad I didn't know about that conference...It sounds like just the thing that I've been looking for..Honestly I didn't even know about the GIG until just now..or even thought about looking at meetup.com....both of these options might be just the thing I've been looking for..I'm kinda new to Celiac so I really don't know too much...Ill certainly look into both of these options.. :D

upwitht21 Rookie

I live in northern mn and there is nothing here, trying to find food takes me to 3 grocery stores so I definitely feel your pain. Hang in there.

Jess

looking for info Rookie

You are at the best place to meet and vent your frustrations. We have all been where you are and many people are on the same road you travel.

Join us! :D

:D I appreciate the understand I sometimes feel like i complain to much on here..I've only been on here since dec and it seems like all I have is a lot of questions and frustration to deal with..

looking for info Rookie

I live in northern mn and there is nothing here, trying to find food takes me to 3 grocery stores so I definitely feel your pain. Hang in there.

Jess

I'm sorry Jess...Wish I could give you some tips or information to help or ease the stress...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.