Colonoscopy And Gluten Test--Negative

[GFsis]

A few years back I tried a gluten free diet maybe for about a month or so before getting tested for gluten and having a colonoscopy. My doc said everything was fine. I was experiencing sudden scalp problems, pus filled bumps and alopecia areata and severe anxiety. My scalp would break out in these blisters...my derm told me it was seborric derm. and follicultis. I only had one type of gluten test and Im not sure what it was. Anyways I went back to my regular diet---which primarily contist of bread and pasta. Anyways my problems came back. I've been seing a dermatologist and my scalp issues are driving me mad. I've tried all kind of shampoos, ointments and I still have huge bald patches popping up and blisters everywhere. So for the past month I've tried going gluten-free again and my scalp is about 95% clear of the bumps. I am so certain that gluten is the culprit or something in my diet. Could I have celiac and still have a clear colonoscopy test? Should I try to get tested again. This is driving me nuts...I went from having beautiful waist length hair to having hair that can barely grow.

[mushroom]

Did you have a colonoscopy or an endoscopy with biopsies? Colonoscopies cannot diagnose celiac disease because it manifests in the small intestine, not in the colon. Also, there are blood tests that can measure antibodies to gluten. Did you ever have these run?

The blisters sound like they could be dermatitis herpetiformis, the skin form of celiac. The skin adjacent to these could be biopsied by a dermatologist for a possible diagnosis. But for all testing, if you have been gluten free the testing is almost guaranteed to be negative because your body stops making the antibodies and your gut starts healing in the absence of gluten.

Welcome to the forum and feel free to ask any questions you have.

[kerrylee]

Hi there, I was so happy to hear someone elses story thats just like my 18 year old sons. We went through 3 years of hell with dermatologist, center for infectious disease, shands hospital, allergy tests..you name it. finally figured out it was a gluten allergy, also dairy. I would love to talk to you in length about this nigjtmare and maybe we can help each other. I also just took my sons to a GI doc. One month ago. His biopsy was negative. Its wrong. Hes been off gluten 8 months. It was about 90% clear when hey stopped. I finally took him to a homeopathic MD who did a simple blood test and put the whole thing together. Although if hey goes on a antibiotic for anything, hey gets it back..tjen its yeast. Its very tricky. Please call when its a good time. Good luck!

[nora-n]

there is a DH folder here, and you can read other stories there too.

DH IS celiac, and a diagnosis of DH means a celiac diagnosis.

The antibody responsible is tag-3, so ordinary celiac tests might not pick this up.

I am so sorry the dermatologists did not pick this up.

[kerrylee]

Thank you so much! I will look in the folders.