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Any Groups In Phoenix Az
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Trying to find a group with others that suffer from celiac. Any out there?

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Trying to find a group with others that suffer from celiac. Any out there?

I've heard of this one:

http://phoenixceliac.org/

There's one down in Tucson, too: http://www.southernarizonaceliacsupport.org/

Have you checked out the gluten free bakery up there, or Picazzo's?

http://www.glutenfreecreations.com/

http://www.picazzos.com/

If you need someone to chat with, send me a private message. I'm down just past Tucson, but we head up to Phoenix every once in a while, and I'd be happy to chat. :-)

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There are a few support groups that I know of. One in Phoenix, one in I believe Gilbert and one in Fountain Hills.

Here is some info on a meeting this Wednesday in Phoenix that you may want to attend.

This month's program: **THE RESTAURANT TABLE**

When: Sept 7, 2011, starting at 7pm

Who: CDF: Greater Phoenix Chapter Members, Guests & Friends

(INCLUDING: Youth ages 10-19 y/o interested in forming a Youth Group!)

Where: Paradise Valley Retirement Community' s Community Room, 11645 N 25th Place, Phoenix, AZ 85028 (Please park in the street.)

All of us can be very grateful that more & more restaurants are paying greater attention to our gluten-free dining needs. Our September meeting, to be held this coming Wednesday Sept. 7 @ 7PM, will celebrate some of these delicious dining options.

Join us at one of our most popular programs of the year..."The Restaurant Table." Meet representatives from 4 Valley restaurants and learn about their gluten-free menus. Newly invited guest restaurants include:

"The Melting Pot", "Outback Steakhouse", and "Blue Wasabi". And, returning guest "Picazzo's" is excited about sharing information about their new, expanded gluten free menu.

Join fellow CDF-Greater Phoenix Chapter members & friends as we learn about these restaurants' gluten-free options, ask questions about their menus, and gain insights into gluten free dining in general.

If you can, please bring a favorite gluten-free item for our refreshment table to share with fellow attendees and our restaurant guests. Samples of protein drink mixes have been provided by "Growing Naturals"; and, "Jovial Foods" has donated some pasta and filled cookies. For concerns or questions about treats to share, you may contact our Chapter's Activities Chair, Charlene at:

bcerpelding@cox.net

As always, please bring a list of ingredients so that fellow attendees can check for possible food allergies.

AND ANNOUNCING....youth ages 10

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I should add that I received that in an e-mail from a yahoo celiac group.

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I'm in Phoenix, and newly diagnosed. I was literally at the end of my rope with undiagnosed doctors visits. Spent thousands of dollars on doctors, wife divorced me because there was never a diagnosis, lost my job in law enforcement because I was unable to absorb nutrients. Gained about 80 lbs, right in front of my doctor whom I'd been a regular for 15 years. Never once was a suggestion put forth to test for this.

So... Yeah, I'm filthy angry, but also finally have something that I can form closure around.

I have many questions, so I'll have to look into the meetings mentioned above.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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