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California Support Group Info

Lori

By Lori
in Introduce Yourself / Share Stuff

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Lori Newbie
Lori
Posted

Hello! Is there a support group in Roseville California?

Thank You! Lori

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Lori Newbie
Lori
Posted
  • Author

Stacie,thank you for the info.

Lori

  • 2 months later...
dana-g Newbie
dana-g
Posted

Does anyone have a contact for R.O.C.K. in Orange County, CA? I e-mailed both of the contacts on the list that's on this site but neither of them have answered back. I would really like to get my daughter involved with other celiac disease kids! Thanks for any help!

Thomas Apprentice
Thomas
Posted

L.A.

  • 1 month later...
Guest Sarabi7
Guest Sarabi7
Posted

Does anyone know of any support groups in Fresno??? Any information would be much appreciated.

Thanks!

  • 3 months later...
Alliemat Newbie
Alliemat
Posted

I see there is a support group in Barstow CA and am wondering if any of these folks live in the Victorville/Apple Valley/Hesperia area. I am in Apple Valley and would like to get together with other gluten-sensitives closer to home than Barstow. -Alliemat

  • 1 month later...
Merika Contributor
Merika
Posted

Hi Smith,

Did you find a group in Hollywood? I'm in Hollywood! Would love to hear of something nearby.

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flagbabyds Collaborator
flagbabyds
Posted

There's a Palo Alto ROCK group

  • 1 month later...
kactuskandee Apprentice
kactuskandee
Posted

Alliemat!!!

I'm right in your area, AV and VV. Barstow had a fantastic meet last week. Wish you had been there. But I agree, it would be great to have one more local, especially since they would more than likely have to be in the evening (and who wants to drive the I-15 at night). Email me and maybe we can start something.

Kandee

  • 5 months later...
Guest kmmolina
Guest kmmolina
Posted
Does anyone know of any support groups in Fresno???  Any information would be much appreciated.

Thanks!

<{POST_SNAPBACK}>

Sarabi7...I'm from Fresno. I'm newly diagnosed and havn't been able to find any support group, so I was hoping to find a group on this website where we can at least post back and forth with each other.

Kathleen Molina

  • 2 weeks later...
elonwy Enthusiast
elonwy
Posted

I'm in Culver City ( which is very close to hollywood). If theres enough of us, maybe we could start our own :)

Elonwy

Merika Contributor
Merika
Posted

Hey, cool! Pm me :)

Merika

Ca Kathleen Newbie
Ca Kathleen
Posted
Hello! Is there a support group in Roseville California?                               

                                Thank You! Lori

<{POST_SNAPBACK}>

Is this Lori Z? This is Kathleen D. in Carlsbad. :P When were you diagnosed?

  • 2 weeks later...
Thomas Apprentice
Thomas
Posted

Hi everyone,

Merika mentioned that there was a discussion to meet up.

Merika Contributor
Merika
Posted

Yes, I think I will start a new thread on this.

Merika

  • 3 years later...
Paul Jackson Rookie
Paul Jackson
Posted
Does anyone know of any support groups in Fresno??? Any information would be much appreciated.

Thanks!

Yes; please visit Gluten Free Fresno, a Yahoo! group at Open Original Shared Link .

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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