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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”.I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.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.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”.
I first visited the Doctor when I collapsed at work in extreme acute pain (think appendix) when I was about 19 (approx 1996).
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.
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.
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.