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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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