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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Di Wallace's topic in Related Issues & Disorders
      1

      Mucus discharge

    2. - trents replied to ARSTONE's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Feel Good gluten free chicken soup dumplings

    3. - knitty kitty replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Hidden Gluten in distilled vinegar

    4. - Di Wallace posted a topic in Related Issues & Disorders
      1

      Mucus discharge

    5. - ARSTONE replied to ARSTONE's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Feel Good gluten free chicken soup dumplings


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,824
    • Most Online (within 30 mins)
      7,748

    Maciek
    Newest Member
    Maciek
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      We usually see mucus in the stool in those with undiagnosed celiac disease and those not adhering to a gluten free diet. However, the mucus could also be coming from lower down in the intestinal track. I would seek a physician consult. You might also check into getting a follow-p endoscopy/biopsy on the small bowel to check for healing progress since going gluten free.
    • trents
      @ARSTONE, not to be picky because there has been evolution in the terminology with regard to gluten disorders. And the terms "gluten intolerance" and "gluten sensitivity" are still used by some interchangeably. But with time, "gluten intolerance" has become synonymous with celiac disease with "gluten sensitivity" referring to NCGS (Non Celiac Gluten Sensitivity). Having said that, whatever it may be, apparently there is an ingredient in that product that doesn't agree with you.
    • knitty kitty
      @Manaan2, You may want to consider switching from Miralax (polyethylene glycol) to magnesium citrate and Thiamine supplements.   When I was prescribed Miralax for constipation, I developed worsened gastrointestinal problems, including worsening leaky gut syndrome.  Since polyethylene glycol is a synthetic chemical made from petroleum or coal byproducts, I was uncomfortable with that.   Miralax can cause poor vitamin absorption, flushing vitamins and minerals away before they can be absorbed.  Miralax can cause electrolyte imbalances, meaning low magnesium.  Low magnesium levels can cause constipation.  Low Thiamine Vitamin B1 can cause constipation as well.  Magnesium and Thiamine work together to make life sustaining enzymes.  Without sufficient thiamine and magnesium, the gastrointestinal tract slows down resulting in constipation, a sort of catch twenty-two.   I quit taking Miralax.  I took a form of Thiamine, Benfotiamine 250-300 mg, at the beginning of every meal and 200mg magnesium citrate or magnesium glycinate or magnesium l-threonate (Neuromag) at the end of every meal.  My constipation resolved quickly.  When my stool got too loose, I simply reduced the amount of magnesium.  I did not reduce Benfotiamine which has been shown to promote intestinal health and reduce leaky gut syndrome.  If thiamine at night gives too much energy to fall asleep at night, skip the Benfotiamine at the last evening meal. Blood tests ate not accurate measures of vitamin sufficiency.  The best way to check for Thiamine insufficiency is to take it and look for health improvement within a few days.  Thiamine is water soluble, easily excreted in urine if not needed.  Thiamine is safe and nontoxic when used in high doses.  No harm in trying, just to rule this out.   Best wishes.  Do keep us posted on your daughter's progress!
    • Di Wallace
      I don't know if anyone can help. I was diagnosed with celiac last June. Since going gluten free the diarrhea has stopped, in fact things have gone the other way. What is bothering me is the occasional rectal mucus discharge. I have no other symptoms and it doesn't happen very often. As I haven't seen anyone since my diagnosis, I don't know if this is normal or not
    • ARSTONE
      The issue is I'm not actually celiac but gluten intolerant. So do t know why I am so sick from this. It's been two days. 
×
×
  • Create New...