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We spent K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. I lost major muscle mass and tone, my ability to comprehend, articulate and recall information. They gave him some breathing stuff to calm his lungs down and then the nurse brought in this wonky looking pain medicine.I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I asked if it was gluten free (because my son has been glutened before by generic drugs) and she said “oh, I don’t know, I don’t know how you would find that out”. So I refused the drug – the last thing my son needed was severe stomach pain on top of the breathing issues.Right before my diagnosis, I was having major bladder pain.I was diagnosed with interstitial cystitis but only by the questionnaire, not by a chemical test.

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I have no psychiatric problems, but I sure as hell thought I would lose my mind.

The instructions I got were “Don’t eat wheat, barley or rye; there’s the door.” Years of being miserable, too sick to hardly do anything but drag myself to work and lay on the couch.

Constant pain, vomiting, weight loss, GI bleeding, the list goes on and on.

Another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes)Another encouraged me to work out at a gym.

I tried but kept feeling faint on the treadmill and then, my legs and back went numb.

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