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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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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      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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