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How About San Jose, California?
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5 posts in this topic

I live in Santa Clara and would like to know of any support groups in my area.

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Hey, I just found a posting with the info I needed. Has anyone attended the group at Stanford? If so, would you recommend it? I could also check out the one in Morgan Hill. Any comments are appreciated.

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Let me know if you check out the one in Morgan Hill. I have family there and could possible arrange visits to be able to make it to a meeting. I don't know if you want to travel there, but there is also a support group in Santa Cruz, they meet once a month I think, at Dominican Hospital.

I have not had much luck with the support groups here. One is only 4 times a year and their last meeting was at, wait for it, Pizza Hut! They wanted to show us that we could have a safe "crustless" pizza. This is sauce, cheese, and toppings cooked in a hot wings dish. And they also eat the salad bar. This didn't work for us, since we are dairy free and my kids don't like sauce or any other topping than pepperoni. So this was a meal of just pepperoni, and the topic discussed was about dealing with schools in regards to the laws that make them have to provide your children with gluten-free foods and supplies, etc. Which doesn't apply to my kids, because in order to demand the school provide those things you have to have an actual diagnosis. The schools in my area are great with helping my kids, but I send their lunch and a snack box and don't hold the school responsible if my children accidently get gluten. I stay in close contact with the teachers and the school nurse. The leader of the group actually put a restaurant out of business by suing them after they fed her daughter fries that were cooked in with the chicken nuggets. Her daughter is super sensitive and ended up in the hospital over it. I personally wouldn't be taking my child out to eat if she was that sensitive...Sorry for the rant. I am frustrated to not have a good support group available to me. Although I am thinking of putting up notices around town looking for people interested in starting a group, because I keep running into people who tell me they have a friend in town who can't eat wheat/gluten either. So I know there are at least a dozen or more of us in my town of 10,000!

The other support group is an hour and a half drive (one way!) late at night once a month on Thursdays and I can't be taking my kids out of town on school nights. So we have never made it to that one.

God bless,

Mariann

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Check out the calendar on this site. The Bay Area ROCK (raising our celiac kids) is having a picnic in Palo Alto on Sept. 26th. Sounds like fun. You bring your own food to BBQ along with outdoor toys. Someone is taking orders for pizza crusts and breads you can purchase that day.

The Santa Cruz Support Group is meeting at Dominican Hospital on Sept. 18th with a potluck meal and a speaker. He works (I believe) at the New Leaf Market in Felton and someone I work with who lives there raves about him and his wealth of knowledge.

DK :rolleyes:

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I'll definitely follow up with you. To be frank, the group at Stanford would be more convenient, as Morgan Hill is South of us - and if you know Bay Area traffic, well, 'nuff said.

I agree with you that there are more and more celiacs popping up every day. I met one just today when shopping at REI. The clerk was helping me locate an insulated backpack (I have a 21 our flight coming up and want to bring my own food on board) and when she asked me why, I told her I had celiac disease. She was extremely excited as she had just been diagnosed. I'm running into this scenario a lot lately.

Thanks for your reply. I'll let you know what I find out.

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    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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