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Dissappointing Day: i went to my fibro dr today and told her about the last 6 weeks. She looked right at me and said, "Well, I am sorry that things have been going so badly, but there is nothing else I can do for you. Just continue looking for the medical causes."!!!!!?????? No advice, no general direction, just continue with what you are doing. Thanks! I started crying in the office as i was so frustrated ( i rarely cry in front of others).

The "good" news is that i have arthritis in my right foot too!

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How frustrating.

It seems once again the patient has to do all the hard work. I am so sorry you didn't get more help.

Sending hugs

Mw

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are you still taking pristiq and is it working

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joolsjewels - i saw you were online earlier today, and although you didn't bump up this post, i wondered how you are doing.

have you had another test run to see if you are still producing antibodies? there's an RN who has celiac, who has become a specialist in the topic, speaks internationally, consults, etc. i think she really knows her stuff. she has people go gluten & dairy free, because of what the person earlier said - the casein (milk protein) and gluten strands can look alike to the body. here's her website: http://glutenfreern.com/ take a look at the link mid-way down the front page under "frequent misdiagnoses" and then at her link under fibromyalgia. reading through your post, i wonder if you are still getting exposed to gluten. she does do phone consultations - i think she knows more about this topic than any doctor i've encountered. after i talked to her, i had my primary care doc order the blood tests for me. he didn't think i had it. he didn't think my daughter had it (his words were that all her stomach problems were in her head.) we appreciate that very much. :angry: however after the daughter being gluten-free for 4 weeks, she's a world better, both mentally and physically.

you can't take this with other antidepressants, but 5HTP is something I take that helps your brain produce melatonin to sleep and serotonin for a good mood. but DON'T take it while you're taking another anti-depressant. you don't want serotonin overload. i'd encourage you to do some research into it. sounds to me like you might be still having antibodies causing all these other symptoms, like the fibromyalgia. If a person's intestine isn't absorbing tryptophans, they don't sleep well and might feel anxious or depressed. those are all linked together. i took paxil for a few months (bully boss was making me insane) and my son (college student) took celexa for anxiety attacks and depression. both of us went off of them and found the 5HTP helped more than anything else - and the only side effect is that it can make you sleepy. i take just one a night - i buy mine from pureformulas.com and get the one made by Thorne Research Labs (cuz they are the researchers).

but again, please do some research and if you want to take it, do it safely. i just didn't want to ignore your post because so much there sounds like you're still having antibodies, your gut is may be not absorbing nutrients and you may be malnourished.

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    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
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