I have always felt like I had many more doctor visits than anyone else I knew growing up.And I always felt like I had to convince doctors that my issues were real. In that time I saw 60-70 different doctors, got tested for a ton of stuff (can we say the majority of these were intrusive and uncomfortable, if not downright painful) and had more drugs thrown at me than you can shake a stick at.I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office.Drugs made my already ripped up gut worse and so I did not take them.I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious. I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I confronted him on the fact that this seemed to be about questioning the gluten, and he denied it, but you could tell by his “speech” that it was all about him feeling the need to get us sorted out.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 lost it…took my life in my own hands and kept that appointment. Since then all the pains – guts, joints plus fatigue etc.
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.
I banged into walls and tripped down stairs, becoming covered in bruises. Then the doctor came in and proceeded to give us a 15 minute lecture about how I need to trust more and my son needs to be less anxious – he even managed to quote Reagan in his little speech.
After being tested for celiac about 5 different times and it being negative for some unknown reason it finally came back positive!!
Also they did genetic testing that showed I had genetic mutations that made me prone to celiac.