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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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    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
    • so does it mean a person who carry dq2 or dq8 gene will have high chance to develp celiac disease if they continue to eat gluten or some other stuff trigger it??      
    • I just wanted to share my experience. I started with the endoscopy because I was having symptoms of a hernia + I had a colonoscopy at the same time to test for Chron's. While getting the scope the doctor noticed damage of the small intestine and did biopsies and they came back positive for Celiac disease. We followed up with the necessary blood work to confirm and those all came back like yours, negative, however my genetic testing was positive. So although rare, it is possible to test negative on the blood work and still have damage and be a positive. I don't know why my blood work was off, but I am glad I had the scope first because I would have never known the damage I was doing if I relied solely on the blood work. 
    • You're welcome. Good that you're having the gene test as well. If you DO have the gene(s) then you realize one can present with celiac at any point in life -- any age -- so you would need to be tested like you were, every 2 years in the absence of symptoms. If one develops symptoms then they need to be tested right away instead of waiting for the 2 yr. mark. It's not common, but is possible to test negative on the blood and still have villi damage on endoscopic biopsy. So depending on the results of the gene test....... you might see if your doc will do a endoscopy for you OR you might be what they refer to as something like a pre-celiac where you're not testing positive yet but most likely will soon.
    • Just don't give up.  Good luck and best wishes to you.  Let me know how it's going for you.  Been there, done this.  It ain't fun.
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