How long did you have celiac disease before you were diagnosed?
I was wondering, to anybody who has celiac, how long was it before any of you got diagnosed? Months? Years? I’m asking this because, well, I just diagnosed with a connective tissue disorder (ehlers danlos syndrome), and my WBC count was slightly elevated (10.9) and my celiac levels were slightly elevated. My blood pressure keeps getting lower but my doctor who diagnosed me (who is also a geneticist and specializes in rare genetic conditions) said that it was probably due to EDS. I have mucus that comes out w/o stool, clothes are looser but the scale says I weigh the same that I’ve always weighed, muscle cramps, joint pain, tingling and numbness in fingers, toes, etc…I’ve always had rotten egg burps/vomiting episodes/dizzy spells ever since I was little, weird menstrual problems, vaginal dryness, dry eyes, dry mouth (on and off), etc…I DO haveoverly flexible joints, my skin is really stretchy, so I do know that I have EDS(classical type) and that it causes symptoms like this as well
But I’m wondering if it can be causing EVERYTHING I feel. I still feel like I might have sjogren’s syndrome or celiac or something, or I don’t know if I’m just being paranoid.
Anyway, how long did it take you guys before you were officially diagnosed with it? I’m kind of scared cause I’m wondering if my symptoms could be signs of small intestinal cancer. Although sometimes, my stomach problems will completely clear up, and then all of a sudden they’ll hit again (like a flare up). So my symptoms are basically intermittent, they’re never really constant or there every minute of everyday.
Also, I’m very paranoid about the tools they use for endoscopies. I was supposed to have one because I’m afraid they don’t sterilize them properly. Especially since I heard about that place in las vegas nevada with the used needles and stuff at the endoscopy center. Have any of you ever gotten a disease like HIV or hepatitis from unsterilized tools before? Or have you ever heard of someoen getting HIV from an unsterilized endoscope before?
Sorry for all the questions. Thank you!
One more thing. I get really bad acid reflux. I get heartburn and a gurgling in my throat. For a few days it went away for awhile. But then it came back. I’ve been getting GERD since last may. It has gotten worse. Once in awhile I’l have a break and it’ll go away for a few days.
I am now 20.
If you think you have celiac disease and don’t want to do the testing, then quit eating gluten containing products for 2-3 months and see what happens and how you feel. You could get your geneticist doctor to do a dna sample and get it sent off to analyze for the possiblility of celiac disease.
It can take an average of 8 years to get diagnosed for celiac disease just for your information. You may be reading too much medical literature and like a first year medical student feel like you are getting the symptoms of every disease and syndrome you read about.