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:D TO ALL THE MEMBERS OF CELIAC.COM,

THANK YOU FOR GIVING ME THAT SPARK I NEEDED TO RESTART MY FIRE.

I was waiting for my boyfiend at his job, so I decided to check out glutenfreemall and celiac.com. I was amazed at the format, the topics and information. My doctor told me of the site but I just put it to the side. I was diagnosed 9-04 and lost all motivation around 9-05. I just didn't care anymore. I would get upset and just eat anything. (I live alone in Altanta, GA and family lives in Queens,NY and Palm Bay,FL) My family understands what's going on but then again they don't. This becomes so frustating and then depression kicks in. :( I was so moved by the site that I joined and here I am posting this message.

Thanks again,

Charmaine

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Hello Charmaine, welcome to the site!

We all know how frustrating this disease can be, especially if you don't have support. Please hang in there and keep trying to stick with the diet, it is so important to your health both now and in the future!

There is lots of super people in this forum that will try and help you :)

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Welcome! We are always here to help!

Don't hesitate to ask if you have any questions or need any meal ideas!

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You know I have to say the same thing!!! I was very frusterated with all the no gluten stuff. I wasn't going to try it for a while. (putting my daughter on it) But I posted in the DH area about my daughters condition. And because of another parent who's child had the same problems...it gave me courage and hope that I could do this. I have been so excited to get my daughter well. She loves the new foods she is eating. And my stress is far less than a few months ago.

Thank you to this site TOO!!!!! :D

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I'm so glad you guys have found us here.

There are a bunch of really great people here who are both very supportive and knowledgeable and are always willing to answer any questions you might have.

Welcome to the forum!

Karen

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HI,

I too live alone and in a area where gluten is rarely known or understood. It has been a long learning curve but after two years of perserverance things are nearly under control. One word of warning is after being gluten free for a long period of time and then make a food error the after affects are more severe then previous attacks.

Good luck and keep trying. It does get easier.

Chronic :D

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I was diagnosed on 9/04 too... most of my family is clueless too and really don't have the drive to figure it out for me... I was pissed about that over thanksgiving but I've come to a far better place about it. Hey its my disease and my issue and they all have their own problems... I decided I can stay mad at my family forever or just do what I have to do. So I choose to love them and I'll deal with my Celiac issues.

I tend to think every that happens to us in our lives will turn out exactly how we embrace it. If you think having Celiac is a pain or hassle, thats exactly what it will be. If you look at it like a new challenge then thats what it will be.

Someone (I think on this list) said they were so glad when they found out it was Celiac and not some terrible disease.. heck this can be controlled with diet, so essentially its curable. My brother has mouth and tongue cancer.... he has 4 months to 4 years left (odd time table, I know) so in comparison to that, wow did I get off easy!

If you look at it like a path to good health its just easier. If you decide to go totally gluten-free keep in mind you will have slip ups, I've read of some on this list by people who have had Celiac for years... it happens but its no reason to get depressed, you just learn from it and go on! Enlist your boyfriends help... I did that with mine and he is so supportive, he goes to bat for me all the time in resturants and he carries a gluten free card I made on my computer with him so he can show it to the chef at resturants..

You can do this, its not so hard. Also if you have a Whole Foods market around you (check on their web site for locations, they are really almost everwhere) they carry gluten-free baked goods which are really tastey (and lots of other gluten-free stuff) I drive an hour to get to the closest one but its way worth it for me.

Best, Susan

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Those are all good points Susan. I've been gluten free for over 15 years and there are still slip ups. When you live in a gluten world, it's impossible to avoid them all. When your family or friends get annoyed when you question something. Just explain that it is your responsibilty to look after your own health (diet), and your health depends on double checking everything that goes in your mouth. You are not doing it to affend anyone. After all, we can't go out and enjoy activities with them, if we are in the bathroom ill! :o

Hang in there and stay healthy!

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:D welcome mike'speanut. This is an awesome forum with great people who are willing and available to give support and advice.

We're in this together and here to help.

;)

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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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