Type 1 diabetic with newly diagnosed celiac disease

by Greg Neely
(Markham, Ontario, Canada)

With ever increasing fatigue, very low energy, some dizziness and shortness of breath I thought I was having heart issues and went to my doctor. The blood tests showed very low haemoglobin and almost non-existent ferritin levels (iron). Two units of blood were transfused, so low were my levels.

As a recent bladder cancer survivor, having recently had a radical cystectomy and neobladder constructed, all thoughts pointed to cancer elsewhere - like the colon. But a colonoscopy and gastroscopy looked clear.

However, the duodenum biopsies showed flat mucosa (subtotal villous atrophy) with chronic inflammation and increase in intraepithelial lymphocytes consistent with celiac disease.

Four months from start to finish, but with months of fatigue and dizziness which I credited to post-operative malaise. I was told I have celiac disease 2 days ago.

I am also a type 1 diabetic for the past 40 years, have had a mild heart attack and coronary artery bypass surgery 11 years ago.

I see a dietician specializing in diabetes and one specializing in celiac disease tomorrow.

I'm thrilled to have a diagnosis. Now comes the discipline of finding and eating gluten-free foods.

Bring on the challenge!

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Oct 20, 2012
DIabetes and Celiac Disease in harmony
by: Greg

Jen, thanks for the note.

For diabetes, I was a member of the DCCT trial and subsequent EDIC follow up study and am associated with the Leadership Sinai Diabetes Clinic in Toronto.

Saw a dietician several months ago who helped with the gluten-free issues. My endocrinologist is a Canadian expert who recently was appointed to the Order of Canada for his work with diabetes research.

I am on an insulin pump and love it. I've been on it for about ten years. Took some getting used to, but my A1c is great and the freedom with the pump is super for me.

I am finding the gluten free diet to be not too difficult except when I travel. But more and more places seem to be offering gluten free foods. I guess the cross contamination is an issue, but I'm gradually getting to know what I can and cannot eat and where I can and cannot eat. Mistakes are inevitable, but I don't want to have to live life as a hermit in my own kitchen all the time. So far, so good.


Oct 20, 2012
by: Jen


I just viewed your posting and am quite interested in finding out more information on your recent visit to the doctors.

You indicated that you were meeting with, not sure if it was doctor or dietician, that specializes in both type 1 diabetes and celiac disease.

I have been insulin dependant diabetic for 43 years and suffering from celiac disease for 37 years. I was on the insulin pump last year, but did not like it what-so-ever and found it so difficult for carb counting with he celiac disease.

If by chance, you could post which clinic you were at, I would greatly appreciate it.

With Thanks.


Apr 28, 2012
Status report
by: Greg, the ex-glutten of gluten

Five weeks into my diet and I am finding a lot of gluten-free food available. Some of it tastes a bit like cardboard, some a bit like a wet sponge. But some is very good and I am having no challenges at home.

The greater challenge is eating out.

Thankfully in this day of computers many of the better restaurants post their menus and their "allergy" lists and point to wheat and gluten. It's handy to know what to eat before going to the restaurant.

I've found in the better places, they know about celiac disease and gluten-free requirements and will work with you.

Some of the faster food places cannot even spell gluten and have never heard of celiac disease. I'm still working on the anemia issue and will be getting iron by IV over the next few weeks and assessment as to iron saturation ability. Hopefully that resolves the fatigue issue, etc.

My vocabulary is improving with quinoa and potato flour and buckwheat, things I knew nothing about (I'm not a chef or a cook - I just like to eat!). There are new taste sensations to be had. Mostly good, I hope!

Apr 28, 2012
by: Anonymous

I'm type 1 as well, and I'm post transplant for a pancreas, but it failed. I'm looking into finding if I have a gluten allergy, but I may have developed it from the transplant. I just wanted to wish you the best.

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