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Diagnosis Without Biopsy?

ejb3939

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ejb3939 Newbie
ejb3939
Posted

I've experienced many symptoms of celiac for the past year. I've had constant diarrhea, severe abdominal bloating and pain, weight loss, and a rash on my neck that is very consistent with descriptions of DH. I had a blood test in September, and the results were negative. My doctor deemed this reason enough to rule out celiac, although I've read a lot of places that it is possible to get a false negative from the blood test. I was still feeling awful and couldn't figure out why, so I decided to go on a gluten free diet and see if anything got better. In just a few weeks my symptoms pretty much went away! The diarrhea stopped within the first week, and the rest of my symptoms cleared up within a month or so, including the rash. I'm a college student and I go to school over a thousand miles from home, so I decided to wait until winter break to see my doctor at home instead of finding a new doctor at school. Normally I wouldn't care either way about a diagnosis because I know staying gluten free is what I need to do to feel healthy, but I live in dorms and am required to pay for a meal plan. There is very little on campus that is safe to eat, and a celiac diagnosis would qualify me for an exemption from the meal plan requirement. What I'm wondering is, given the fact that both my rash and diarrhea cleared up after going gluten free, a doctor would give me a diagnosis without requiring a biopsy. I've been gluten free for a few months now and really can't afford to go back on gluten in order to get a biopsy. I felt sick all the time when I was eating gluten and my grades suffered, so I really want to avoid going back to that if possible. Any thoughts?

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ravenwoodglass Mentor
ravenwoodglass
Posted

If your regular doctor has seen you repeatedly for the issues that celiac caused there is a chance, not a huge one but a chance that when you go back a glowingly healthy person who had all issues resolve that your doctor may diagnose. Make an appointment with him/her and have a talk. Explain why you need the diagnosis and the results of what occurs when you do eat gluten, do not downplay those symptoms. Don't know if your doctor will listen but it is worth a try.

Mine gave me the 'official' diagnosis after the gluten-free diet resolved my issues but my GI had demanded a challenge which made me sicker than I was prediagnosis. Too sick and bleeding (which hadn't happened when I was on gluten) to make it to the biopsy.

nmlove Contributor
nmlove
Posted

I don't have experience with this but maybe a possibility. If not celiac diagnosis, it's at least a gluten-intolerance issue. That, combined with doctor's backing, may be enough for school changes?

WW340 Rookie
WW340
Posted

I agree with the possibility of a gluten intolerance diagnosis. Your doctor may not be comfortable diagnosing you with celiac disease with no objective evidence, but he might be willing to diagnose you as gluten intolerant.

If you have always had the rash in the past that he has seen, and now it is gone, that would be objective evidence and you need to point that out.

Either way, that should be enough for the school if the doctor writes a note saying you need to avoid gluten in your diet.

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