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Old 04-26-2009, 09:51 AM   #1
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VicFuture HB User
Question Mystery Diagnosis: Anyone NOT get help from doctors?

This is my first post, but I have been living with food intolerance/allergies since I was a child. And wanted to ask the community for some feedback.

At 35 I have had to eliminate some major food groups. It is easier to list the foods I CAN eat, rather than the ones I cannot.

Eliminating whole groups such as dairy, fish, nuts and citrus (to name a few) makes getting a balanced diet rather difficult. But I have managed to do so w/o any serious nutritional deficiencies, tons of internet & library research and a lot of painful trial and error.

Ive had 2 RAST tests, several skin pric k tests and a full blood work up looking for anything that could "prove" that more than 100 foods make me feel sick. A handful of doctors wanted to test me to be sure . My weight was plummeting and I had no energy for months. My symptoms were simple gas to not being able to get out of bed and lift my head. And although these symptoms are real, I cant prove any of it. This is where it gets tough.

Because my tests do not bear out what I am telling the physicians, at the end of the visit I am told either 1 of 2 things:
1) Sorry cant help you, you are not showing us anything to work with.
2) Its in my mind. (That one makes me cry)
And I go home to deal with this odd hand life has dealt.

So I ask, has anyone here been told something similar? That your tests are not coming back positive enough to shore up your claims of severe pain and incredible discomfort. that food and drugs make you so sick you feel like it might even be better if you fell into a coma, so you wouldn't have to deal with eating anymore. Afraid to put something in your mouth, even though it was "safe" last week, this week it could incapacitate you.

I have lost 75 lbs with out dieting due to elimination in the last 9 months. I eat like a person following a weird cult. Restaurant dining is all but gone, save for a few local places that serve Buddhist/vegan type fare. My husband has graciously forgotten how much fun it was to dine out and gets me flowers instead of chocolate for Valentines day. I guess I am lucky. I have a supportive family, enough brains to keep myself alive, but really wish there was a test or shot that could reveal the true cause of this mystery diagnosis.

Thanks for reading.
VF
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Last edited by VicFuture; 04-26-2009 at 09:54 AM.

 
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Old 04-26-2009, 11:11 AM   #2
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Join Date: Apr 2009
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dragonfly57 HB User
Re: Mystery Diagnosis: Anyone NOT get help from doctors?

I can understand what you are going through. I have over 25 food allergies. My allergist told me that while it was preferred not to eat anything I am allergic to, I had to decide what I could and couldn't eat based on the reaction for each item; otherwise I wouldn't be able to eat.

I'm sorry you are going through that. By the way, I had been told by another allergists I had no allergies (a couple of years ago). I knew that was wrong because I knew some foods that made me so sick. You know your body better than anyone. Also, my sister-in-law told me she went to a talk one time by an allergist who said our body's cell structure changes every 7 years and it is possible for our allergies to change - go away, increase, etc.
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