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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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    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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