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Drugs made my already ripped up gut worse and so I did not take them.I have no psychiatric problems, but I sure as hell thought I would lose my mind.
Been on gluten free since September now and feel so much better.We spent $30K 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.What 24 year old girl should be living on a diet of baby food and applesauce because she can’t keep anything else down?After being tested for celiac about 5 different times and it being negative for some unknown reason it finally came back positive!!I felt better for a month then spiraled downwards fast. Begged to go to Boston, he only ran more blood tests. So over 16 years after me presenting with the very scary symptoms, and making plans to gradually leave work due to sickness (at the age of 34), I finally got diagnosed. My entire GI tract BURNED from mouth to rectum and even water burned doing down.
Homeopath tests came back positive for 30/40 different food allergies. From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. One doctor told me “congratulations on your weight loss”.
(well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed! When nothing conclusive was discovered I was just…forgotten. It’s just inflammation, take it easy, take some more pills, and it will go away. I suffered on and off with depression and heart palpitations.
) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. never trust the word of a “nurse practitioner”–ask for the report and read it yourself! Now when I get glutened, I go into IMMEDIATE depression mode. I know I’m getting better when my mind clears and I am happy again.
I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. Our life came to a stand still as my husband watched helplessly while I went downhill. I was told if I cut gluten out completely, I would feel fantastic and everything I’ve been complaining about since I was in my early teens would go away. Apparently if my son is just less anxious then everything will be fine. One dermatologist had me on tetracyclene every day for YEARS to clear up redness around my mouth and nose. I remember one specific point in my early twenties where my stomach issues were so bad I could barely leave the house.
I was unable to walk, stand, lie down or stand without agonizing pain. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. This was my first run in with a medical person who had this opinion toward celiac, and I have huge compassion for those who have to deal with attitudes like this all the time. The GI doctor told me that I was stressed and need to “lie on the floor and listen to music”.
It seems that my bladder issues only flare up when I am glutened, so I am not sure about whether it’s a celiac symptom or true IC.