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

Gluten Free Support Groups In Southern Ca?

FruitEnthusiast

Recommended Posts

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

Does anyone know of any gluten free support groups in the Los Angeles/Orange Co area? There's one in San Diego, but that's too far. I'm in Long Beach. I'd like to find a group near one of the beach cities between Santa Monica and Newport Beach if possible. Haven't had much luck so far looking on the Gluten Intolerant Group site or the Celiac Foundation Site.

I've been gluten free for 3-4 months now, and I'm still healing, and sick off and on. I'm not even close to going out to eat yet, so gluten free dining groups are not an option at this point. I have experienced what happens with even slight gluten exposure :( and my diet is extremely limited, as I have other food sensitivities from Leaky Gut. I just found a great Naturopathic Doctor locally who has helpful information and is very supportive. She has me drinking a natural supplement powder to heal the damage. Can't tell if it's working yet.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Did you check the category of support groups on the main page yet?

https://www.celiac.com/categories/Celiac-Disease-Support-Groups%2C-Organizations-%26amp%3B-Contacts/United-States-of-America%3A-Celiac-Disease-Support-Groups-and-Organizations/

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

Yes. The Los Angeles group was more of a social/dining group, and pretty far from me, considering LA freeway traffic. I was looking for a meet weekly and talk sort of group, hopefully a bit closer. Unfortunately traffic is a huge consideration in these parts.

When I left two voice mails for the contact person in Orange County on the Gluten Intolerant Group site, and never heard back after two weeks,I was a little deflated.

I just looked at the main page list again on this site, and I'm going to try the contact numbers listed for the Orange County and Newport Beach groups. Less traffic in that direction. Thanks!

cap6 Enthusiast
cap6
Posted

check the celiac Disease Foundation site. I don't know what part of L.A. you are in but sthere is a very active group in Pasadena. Also one in Burbank/Glendale area.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

Thanks for the info. I'm hoping to say closer to the coast, but I may try those if nothing else turns up. Good to know.

AGH2010 Apprentice
AGH2010
Posted

I'm in Santa Monica and have similarly had no luck finding a support group for my 2 year old who is celiac. I was hoping for a playgroup so she wouldnt feel like the only celiac kid out there. I emailed the Celiac Foundation and was told they'd forward my contact but still haven't heard anything. I'm surprised our area has so few groups when other areas (like NorCal where I used to live) have so many!

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

I agree. I thought I would find lots of options anywhere in CA. I thought Santa Monica in particular would be one of the likely locations for a gluten free support group. I'm from both southern and central CA. I've always related more to central or northern CA mindsets. Sometimes it seems people in the LA area are too busy being happy to stop and think about reality. I'm happy, but also very down to earth. Sigh. I had the same problem years ago when I was looking for a divorce support group. Nothing.

I did just find a gluten support group in OC that meets for dinners about once a month. It's for adults though. If I hear of something for kids I'll let you know.

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

Celiac.com Sponsor (A8-M):


AGH2010 Apprentice
AGH2010
Posted

What irks me is that these same neighborhoods are now full of restaurants serving gluten-free foods in contaminated ways to appeal to people avoiding gluten just to be trendy. So now I have to explain to friends that we can't just eat out because places claim to serve gluten-free when they use the same grill to make them. They probably think I'm being over-protective.

Thanks, I appreciate you keeping an eye out for groups tailored for kids. Good luck meeting fellow adults!

cap6 Enthusiast
cap6
Posted

Celiac Disease Foundation Southern California support groups:

Burbank-Glendale-Pasadena contact tenaya3@earthlink.net

East San Gabriel Valley contact travelynne812@yahoo.com

Inland Empire contact treshearer@aol.com

Los Angels-Santa Monica contactsfrieder@earthlink.net

San Fernando Valley contact

RonSchon Explorer
RonSchon
Posted

What irks me is that these same neighborhoods are now full of restaurants serving gluten-free foods in contaminated ways to appeal to people avoiding gluten just to be trendy. So now I have to explain to friends that we can't just eat out because places claim to serve gluten-free when they use the same grill to make them. They probably think I'm being over-protective.

Well stated!!!!!!!!!!

That's what I just encountered upon emailing a restaurant.

I got an appropriate response from the GM, then the CEO of the restaurant group wrote back to me a little later and his response made me nervous. He talked about the gluten-free items in a "trendy" context, like low cal or organic context.

People can't grasp how little it takes for us to get a cross contact/contamination. I feel like many people must think since we aren't hospitalized because of it that it isn't that big of a deal.

Losing 3 productive days of our life (in many cases more) because of their trendiness is not what we need.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

Celiac Disease Foundation Southern California support groups:

Burbank-Glendale-Pasadena contact tenaya3@earthlink.net

East San Gabriel Valley contact travelynne812@yahoo.com

Inland Empire contact treshearer@aol.com

Los Angels-Santa Monica contactsfrieder@earthlink.net

San Fernando Valley contact

  • 6 months later...
CaliSparrow Collaborator
CaliSparrow
Posted

I'm in South Orange County. Looking for one in this area!!

Cali

  • 7 months later...
sequoiakam Newbie
sequoiakam
Posted

I live near Orange in Southern California and am looking for a support group too. I had my first major flare ups recently, but have been trying to get a diagnosis for over 20 years. I am still getting sick, I had a salad I made myself for dinner and I don't have any idea which ingredient was wrong. It was walnuts, arugula, balsamic vinegar, tomato and olives.

cyclinglady Grand Master
cyclinglady
Posted

I live near Orange in Southern California and am looking for a support group too. I had my first major flare ups recently, but have been trying to get a diagnosis for over 20 years. I am still getting sick, I had a salad I made myself for dinner and I don't have any idea which ingredient was wrong. It was walnuts, arugula, balsamic vinegar, tomato and olives.

Here's a group that meets in Garden Grove.

 

Open Original Shared Link

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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes...
    2. MauraBue
      - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

      Help! My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac. Her favorite candy in the world is tootsie rolls. I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase. Have they been discontinued?? Does anyone have another recommendation...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others thanks again for all the great info
    4. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
    5. knitty kitty
      - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too. I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy). Niacin has been used since the 1950's to improve dermatitis herpetiformis. I try to balance my iodine intake (which will cause flairs...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748
    MauraBue
    Newest Member
    MauraBue
    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

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Have Tru Joy Sweets Choco Chews been discontinued??

      By MauraBue · Posted

      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By knitty kitty · Posted

      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
×
×
  • 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.