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

Anyone With gluten-free Kids In St. Louis


October3

Recommended Posts

October3 Explorer

I'm looking to connect with other parents of gluten-free kids in the St. Louis area, and also perhaps find a gluten-free friend for my 7 yr old son who is feeling so left out and lonely right now. Anyone out there?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Did you try your local Celiac Support group? A lot of them have activities or get-togethers for kids. google "Celiac group st louis"

October3 Explorer

Did you try your local Celiac Support group? A lot of them have activities or get-togethers for kids. google "Celiac group st louis"

I did. There is a R.O.C.K. group listed but the contact phone number is disconnected. There is a support group but they only get together once a year and it was in May. I was hoping to meet someone before next May.

kareng Grand Master

I did. There is a R.O.C.K. group listed but the contact phone number is disconnected. There is a support group but they only get together once a year and it was in May. I was hoping to meet someone before next May.

That's weird. Let me see if I can find something out. I'm in KC.

kareng Grand Master

Is this the ROCK one you had?

O'Fallon - Support Group

Contact: Beth Anne Miller

7264 Sweetcider Lane

O'Fallon, MO 63366

Tel: (636) 294-2037

E-mail: Frankbethm@aol.com

kareng Grand Master

These are from the celiac.com page. Down the left side " support groups". Then the link to local groups. I am trying to get a hold of someone I know in St Louis to see if she has anything for you.

St. Louis - Support Group

Contact 1: Bill Vellios Sr.

St. Louis Chapter (CSA)

812 Kehrs Mill Road

Ballwin, MO 63011-2442

Tel: (314) 391-6855

Contact 2: Joan Fitzsimmon

6716 Westway Road

St. Louis, MO 63109

Tel: (314) 351-5114

Contact 3: Linda Ritter

E-mail: nltr@charter.net

October3 Explorer

These are from the celiac.com page. Down the left side " support groups". Then the link to local groups. I am trying to get a hold of someone I know in St Louis to see if she has anything for you.

St. Louis - Support Group

Contact 1: Bill Vellios Sr.

St. Louis Chapter (CSA)

812 Kehrs Mill Road

Ballwin, MO 63011-2442

Tel: (314) 391-6855

Contact 2: Joan Fitzsimmon

6716 Westway Road

St. Louis, MO 63109

Tel: (314) 351-5114

Contact 3: Linda Ritter

E-mail: nltr@charter.net

Thanks Kareg. Yes, I believe the info you had for the R.O.C.K. group is the same one I came across although I don't remember there being an email address. I'll have to see if that gets me anywhere.

I called all of the contacts listed above and got a call back from Joan who directed me to the Bi-State Celiac Alliance or something like that (can't remember now the exact name but it had Bi-State in it) and that is the group that has a picnic once a year in May but otherwise doesn't seem to get together. It seemed from her message that Joan would have been happy to talk with my by phone about navigating issues or she specifically mentioned recipes but she wasn't able to connect me with anyone who has kids dealing with being gluten-free which is what I'm looking for right now.


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



Celiac.com Sponsor (A8-M):



October3 Explorer

The Bi-State Celiac Support Group is the name of the group I was trying to recall.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • 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.
×
×
  • 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.