End Of My Rope

[AmyO]

I have been sick for over 4 years now, and im a 21 year old college senior. I have had about 5 or so different gastroenterologists, had 3 upper endoscopies, a colonoscopy, and multiple other upper and lower GI series tests. My blood tests came back positive for the IgG and IgA antibody titors- which most doctors say is alone enough to diagnose something who has all the symptoms.

I had my first upper endoscopy and it came back negative- the Dr. said he didn't see anything wrong. The second one had the same result. The third endoscopy and third Dr. said that it didn't look like celiac disease but that my duodenum was "pale" which is indicative of malabsorption. Celiac disease causes malabsorption of the small intestine- and I don't understand how with all of my symptoms, a positive blood test, and malabsorption of my small intestine that I could still not be diagnosed with celiac disease!! I was so infuriated. I went on a gluten-free diet for a while and felt better. But after about 5 months it got too hard to handle and since I haven't officially been diagnosed with celiac disease, I didn't think it was really necessary.

I am a college senior who does not like to cook and am pre-med with an extreemly busy schedule. Since I spend most of my time in hospitals as an EMT and with pre-med internships, I just don't feel like going back to insensitive doctors who will not do anything for me. But now my symptoms are getting a lot worse again, and there is still blood in my stool. I tried to give blood a couple of weeks ago and my hematocrit was too low- the nurse there told me that I was mildly anemic. I don't know what else to do and am very much so at the end of my rapidly fraying rope!! I am considering going back to another GI Dr. but I would like to find one who is sympathetic and who specializes in celiac disease. I live in NJ but go to school in PA and would be willing to go to one in either state. Does anyone have any reccommendations or advice that can help me out?? I would really appreciate it!

[lovegrov]

Just my opinion, but you had two positive bloods tests, one biopsy that was at least somewhat suspicious, improved on the gluten-free diet and then got worse when you started eating gluten again, have unexplained anemia, have diarrhea every time you eat gluten, and have now been sick for five years. I know it's not easy on a busy schedule, but it sounds like you need to be gluten-free. You'll never get through pre-med much less med school like this.

richard

[ianm]

You sound a lot like me when I was your age. You are going to have to go gluten-free now or you will never make it. It won't be easy to alter your lifestyle but you have no other option. You have tried the gluten-free diet and did feel better so that is a pretty obvious indication of what is wrong. I had never even heard of celiac until I was 36 and by then I had missed out on and lost so much because of it. Take control of this disease now or you will regret it later.

Ianm