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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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    • You already have an autoimmune condition which does put you at a higher likelihood of developing other conditions in the future, not necessarily celiac.  At any rate, I've been reading reports-- both research articles and anecdotal experiences from AI patients-- linking a gluten free diet with relief of symptoms, particularly a lessening of joint and muscle pain in those with RA, FMS, Lupus, and Chronic Fatigue.  So my point is, even if you don't have celiac disease, if being on a gluten free diet helps you, then stay on it.  As for the digestive issues, it may be worth seeing a GI for.  Lots of things can cause tummy troubles, not just celiac disease.
    • It is absolutely possible for non-Celiac gluten intolerance and/or gluten sensitivity to cause extreme symptoms. The difference between those and Celiac is that Celiac will cause actual small intestinal damage to the villi, while NCGI/gluten sensitivity can have extreme symptoms, there is no damage to the small intestine.  Other causes of bloating can be SIBO or small intestinal bacterial overgrowth.  The title pretty much says it all and you need antibiotics to help combat that. Basically, your small intestine's bacteria is out of whack and you have more bad bacteria than good. I know there is a test but have no experience with this. You may want to google it and read up on it and maybe ask a specialist about it too?  This is something they should be testing for anyway to figure out what is going on.  You could also have food allergies, as opposed to an intolerance like Celiac.  You can see why this is so hard to figure out sometimes! Are you sure you are completely gluten free?  This diet has a big learning curve and cross contamination is important.  Please take a look, if you already have not, at this link.  It was written by a previous member of the forum and although it is a bit lengthy, it is what you need to know about following the diet and living gluten free successfully. She did a very good job on it!  Even tiny amounts in your diet can still cause symptoms. http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ Have you been tested for vitamin deficiencies or anemia?  These could offer a clue to see whether you are malnourished or not. Many people with celiac have both deficiencies and anemia.  Between testing for these and genetic testing to see if you carry a Celiac gene might help you to rule it out if you cannot have a scope done.  But you do remember that you need to be eating gluten for the scope? 
    • Celiac disease is a tricky rascal. Just when you think you've got it under control, it sneaks up and manifests into new and often unexpected problems. At least, this is what we have found over the last decade. From contacts with others who have Celiac disease, we know we're not alone. I'm in my early thirties and find that sometimes my body acts more like that of an old man's. View the full article
    • Thank you, Gemini.   Is it possible for non-celiac gluten sensitivity or intolerance to have this severe symptoms?
      I'm on gluten free diet two weeks now and no change... What are other causes of these symptoms beside food?
    • I am trying to decipher the test and it looks to me like the Total IgA is fine.  Your number appears to be in the middle of the reference range, which would be sufficient IgA for testing.  I am in America so your country's testing is a bit different from here....I really hope I got that right!  If you have severe enough symptoms of a GI problem, some doctors here would move onto a biopsy even with negative blood results.  I think if you cannot get a full Celiac panel done, then a scope with biopsy should come next. Severe bloating has a cause and they need to rule out a food problem. There can be other causes but food is usually a big trigger. Yes, keep us updated!  We are here to help.
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