Sometimes even tests aren’t 100% accurate and Jennifer explains this as well as how hard it can be to get diagnosed when you have Celiac Disease.
Some patients go for years suffering various symptoms not knowing what’s causing them. My own personal experience has been life long and very debilitating in some ways. It wasn’t until i was in my 50’s and my gall bladder quit working that I found out what had been plaguing me for years.
This wasn’t because i was diagnosed with Celiac Disease, but 5 days after Gall Bladder surgery, I broke out with an insane rash, “The Rash From Hell” I call it otherwise known as “Dermatitis Herpetiformis” or “Duhrings Disease.”
This rash, like no other I would say, is a extremely itchy, painful and burning rash that does not respond to topical steroids, cremes, home remedies or any other topical applications that you might try in order to get some relief from its ongoing agony.
This was a turning point for me as doctors had no answers, just creme after creme and several rounds of Prednisone which did nothing for the rash.
I was told “we’re doing all we know for it, go online and do some research” which I did because the rash was now covering about 60% of my body.
After months of researching, I came across one of these photos that looked identical to the rash I had experienced after surgery. It was from Dermatitis Herpetiformis, caused by Celiac Disease.
I had an endoscopy, which was “normal” I was told, but decided on my own to go Gluten Free and see if there were any changes. It took a few months but I noticed the rash getting better and better, and after a while it was gone, at least for a while.
Dermatologist’s biopsies came back with a result of “Medicine Explosion or Connective Tissue Disorder” which most likely would be Lupus. I was tested for Lupus with a negative result. Celiac Disease is a autoimmune inflammatory disease which causes inflammation that could be anywhere. I’ve always had problems with “Tendonitis” which could explain the biopsy’s “Connective Tissue Disorder”.
Being older, it takes more time to heal, if you heal at all, and after a year of eating Gluten free I’m beginning to wonder if the damage caused by Celiac Disease has damaged my Villi to the point of no return as I still cannot put on weight and have ongoing symptoms with DH and gastrointestinal issues.
Weight loss is still a major issue for me even though I eat all the time. Skin issues are still prevalent especially if there is a accidental exposure to Gluten, the DH flares and always lasts for anywhere between 6-8 weeks or several months and is detrimental to the skin. You can’t seem to get enough lotion on it to keep it soft and smooth, it’s like rough sandpaper especially after an outbreak.
I was just like Jennifer’s story, told I just had anxiety issues and not to worry, “it’s all in your head” I was told, and I’m a guy, so it’s not a woman or man thing.
I wish doctors would have taken me more seriously all those years ago and kept looking for answers because if they had, maybe, just maybe, I could have had a better life.