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

California Support Group

annapumpkin

Recommended Posts

annapumpkin Newbie
annapumpkin
Posted

Hi all,

I am looking to start a support group in my area because from what I am seeing we dont have one for 2 hours in each direction and I know there is a need. My problem is, is that I have no experience with this besides leading hospital volunteer groups. So I am wondering if there are any pointers you all can give me or show me the ropes so to speak. I figure if no one else will start one I will do it myself, im sick of waiting for someone else to do it. (5 years) Thanks.

-cheryl

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Hi all,

I am looking to start a support group in my area because from what I am seeing we dont have one for 2 hours in each direction and I know there is a need. My problem is, is that I have no experience with this besides leading hospital volunteer groups. So I am wondering if there are any pointers you all can give me or show me the ropes so to speak. I figure if no one else will start one I will do it myself, im sick of waiting for someone else to do it. (5 years) Thanks.

-cheryl

You can contact the Celiac Disease Foundation at www.Celiac.org. Deborah will be glad to set you up with a starter packet. :)

Great idea!

tom Contributor
tom
Posted
Hi all,

I am looking to start a support group in my area .. .

What part of CA are you in??

I'd be up for a group but I'm in San Jose.

annapumpkin Newbie
annapumpkin
Posted
  • Author

Thanks momma goose...ill do that today. and sorry tom im in Bakersfield California...the nearest support groups I have found are at UCLA or Fresno. :(

pinkscooby6 Rookie
pinkscooby6
Posted

Do you know of any support groups in San Diego, CA? It sounds like you have done your research, and maybe you would know of a site I could go on to find a group in my area.

Lisa Mentor
Lisa
Posted
Do you know of any support groups in San Diego, CA? It sounds like you have done your research, and maybe you would know of a site I could go on to find a group in my area.

Open Original Shared Link

Maybe this will be a start :D If these don't work for you, let us know and we can "hook you up".

ownafish Newbie
ownafish
Posted

Cheryl,

I live in Visalia. I did find a name and number of someone in Bakersfield that has a support group.

Gigi Sorenson

805-325-2339

Internet:

Gigi Sorenson, VLSorenson@AOL.com

Owen

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

Celiac.com Sponsor (A8-M):


annapumpkin Newbie
annapumpkin
Posted
  • Author

Hi Owen

thanks for the information...unfortunately, the phone number and email address are no longer correct. I did have a listing with her name on it but it was 5 years old and the support group is no longer running. <_< Thanks for trying though :D

Momma Goose....i emailed Deborah and was never given a response back...and that has been since you posted your last comment. :blink:

-cheryl

annapumpkin Newbie
annapumpkin
Posted
  • Author

YAY!!!! I heard from Deborah and they had no listing for a Bakersfield Support Group...so I signed up! :D So I have to get through some paperwork but I hope to start a Bakersfield Support group here shortly! So everyone in the Kern County area you are MORE than welcome to come! I am also going to be going to the Celiac Foundation convention on May 3d. My first Convention! Im a little (just a little :rolleyes: ) excited. Thanks for the help guys... and hope to hear from you if your in my area!;)

-Cheryl :P

  • 4 weeks later...
skitube Newbie
skitube
Posted
What part of CA are you in??

I'd be up for a group but I'm in San Jose.

I'm also in San Jose and just starting on this journey. Is there any activity in the area?

Bill

Lisa Mentor
Lisa
Posted
YAY!!!! I heard from Deborah and they had no listing for a Bakersfield Support Group...so I signed up! :D So I have to get through some paperwork but I hope to start a Bakersfield Support group here shortly! So everyone in the Kern County area you are MORE than welcome to come! I am also going to be going to the Celiac Foundation convention on May 3d. My first Convention! Im a little (just a little :rolleyes: ) excited. Thanks for the help guys... and hope to hear from you if your in my area!;)

-Cheryl :P

Glad to hear that you are getting started. I kinda feel like it's great to "pay it forward" and the CDF and a local support group is a great way to do that.

Let us know about the Convention. I have never been to one and hopefully in the future I will be able to.

tom Contributor
tom
Posted
I'm also in San Jose and just starting on this journey. Is there any activity in the area?

Bill

Hi Bill,

This group Open Original Shared Link does a near-monthly potluck, but I haven't been able to make it yet.

  • 2 months later...
Stephielane Newbie
Stephielane
Posted
I'm also in San Jose and just starting on this journey. Is there any activity in the area?

Bill

I am from the San Jose area too, just diagnosed about 6 months ago. If anyone knows of a local support group, please let me know!

Thanks,

Stephanie

tom Contributor
tom
Posted
I am from the San Jose area too, just diagnosed about 6 months ago. If anyone knows of a local support group, please let me know!

Thanks,

Stephanie

Hi Stephanie,

There's Open Original Shared Link w/ ppl in the South Bay, Peninsula and Santa Cruz/Scotts Valley.

I haven't made it to one of their near-monthly potlucks yet, but hope to soon.

I get a daily email of the prior day's posts. Some days there are 2 or 3 posts, some days a dozen.

Mostly it's about useful local info - restaurants, stores, new products.

[Edit: oops :lol: I just saw that I wrote the same thing 2 posts up :chagrinedface: :lol: ]

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.