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Looking For A Friend Who Understands
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3 posts in this topic

Hi,

I'm 23 years old and was recently diagnosed with celiac and a host of other food allergies and health conditions. I was wondering if there is anyone in the Bay Area, California who can relate and would like to be buddies (email, text, chat online, face-to-face). You don't even really have to be from the Bay Area, I just would like someone to talk to (that's what's so great about the internet). Right now I only have my dad (who is sensitive to gluten but no other food allergies) and my boyfriend (who has no food allergies) and they try to help as much as they can but it's not the same as having someone who can directly relate and who will understand my story. Otherwise, I have no other friends because I've been so sick for the past 5 years until they finally figured out it was food allergies a couple months ago. I'd love having more friends I can talk to and we could support each other Admittingly, I need a lot of support right now, I'm really struggling with accepting that this is my new life.

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I live in Martinez in Contra Costa County--whereabouts are you located? There are a number of gluten-free folks in the S.F. Bay Area, and we used to meet up every few months at Mariposa Bakery in Oakland....but it's been a while. If you register at www.meetup.com, you'll get invited to local gluten-free meetups. You just missed a one-day gluten-free conference in Palo Alto, but one-day events are fairly common in the Bay Area--lots of new people to meet. Please send me a PM if you'd like to meet up sometime at a restaurant that has a reputable gluten-free menu. If you actually live in S.F., there are some great gluten-free restaurants (even one that serves sandwiches!).

Also, there are some great celiac organizations in the U.S. that hold annual conferences. I'm a member of the Gluten Intolerance Group of North America (GIGNA), and I attend their conferences all over the U.S. I have friends that I've kept in touch with through this organization, and it helps me not to feel so lonely and isolated. There is a local chapter: GIG of North Marin, I believe. They hold monthly meetings in Novato, but because their meetings are in the evening and I have night blindness (from celiac), I haven't yet attended one of their meetings. There are also several forum posters here who live in the Bay Area, though I've never met them personally. Perhaps they'll chime in...

Please feel free to contact me--I remember all too well how overwhelmed and lonely I felt at first. It's been almost nine years for me, so it's gotten a lot better. Hope to hear from you!

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Hi,

I'm 23 years old and was recently diagnosed with celiac and a host of other food allergies and health conditions. I was wondering if there is anyone in the Bay Area, California who can relate and would like to be buddies (email, text, chat online, face-to-face). You don't even really have to be from the Bay Area, I just would like someone to talk to (that's what's so great about the internet). Right now I only have my dad (who is sensitive to gluten but no other food allergies) and my boyfriend (who has no food allergies) and they try to help as much as they can but it's not the same as having someone who can directly relate and who will understand my story. Otherwise, I have no other friends because I've been so sick for the past 5 years until they finally figured out it was food allergies a couple months ago. I'd love having more friends I can talk to and we could support each other Admittingly, I need a lot of support right now, I'm really struggling with accepting that this is my new life.

I don't live in the CA area but I totally understand how you feel. Besides not being able to eat gluten, I have multiple food issues. The main ones are soy and dairy. I also can't eat alot of vegetables or fruits. It sure can be frustrating and helps to have someone to talk to about all this. I am always willing to talk to you!!

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    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
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