Living with coeliac disease

I live with two auto-immune conditions: type 1 diabetes, and coeliac disease. The coeliac disease is due to my immune system over-reacting to gluten, and the diabetes is due to my immune system killing off the part of my pancreas which produces insulin.

Obviously the coeliac disease doesn’t get much of a look-in on this website as there’s not a lot of technology involved (basically, the “treatment” is to maintain a gluten-free diet). But it’s there in my every-day life.

An admission that shouldn’t be surprising

In conversations with various people about having coeliac disease, I’ve made a statement which has surprised most of them. And their surprise was itself initially surprising to me!

If I could somehow have a cure for only one of these conditions, I’d opt to get rid of coeliac disease.
Coeliac disease much more of an imposition on my life than diabetes!

This may be partly because I grew up (from 14) with diabetes, whereas I was diagnosed with coeliac disease at 49. But I don’t think that’s everything.


With diabetes I do have to manage a lot of health issues. I do think I’m a lot more conscious of my health than I would be without diabetes keeping me on my toes. And I think if I hadn’t grown up with diabetes then I would probably be less healthy than I am now. Not that I’m pretending to be a shining example of fitness!

I have to measure my glucose levels, inject insulin, manage the food I’m eating, and in fact balance those with a huge list of other factors that can affect my glucose levels. Yes I have stabbed myself with countless needles over the years, and to “outsiders” this can be confronting.

There are many short-term risks to having diabetes (e.g. a severe hypo can kill you) and there are long-term risks (hopefully reduced/mitigated by managing to keep my glucose levels close to “normal” human range). But I’ve lived with diabetes for over 36 years so far and don’t feel my life is limited.

Coeliac Disease

There aren’t needles involved with coeliac disease, but there are a bunch of issues.

  • Consumption of gluten can lead to debilitating pain/diarrohea/etc (and for some people hospital admission).
    For me I’ve found this is something I need to avoid!
  • Even without any symptoms (or ignoring the pain) the damage caused to the gut by gluten increases the risks of developing cancer.
    For those of us who have lost friends and family members to cancer, this is a strong incentive!
  • The gut damage can also lead to malnutrition (including bone loss).
  • Having to maintain a strict gluten-free diet avoids the above, but is often awkward, and definitely has psychological impact.

That last one is far-reaching. Luckily for me there are many gluten-free food options available (both through home cooking and also when eating out) but that’s not the entire story.

More intrusive than diabetes?

When interacting with other people or eating out at a restaurant (or just a take-away joint) I don’t have to tell people that I have diabetes. I just choose food that looks interesting, and then I eat as much of it as I want (and balance this with insulin, etc). I like food.

I don’t have to say “I’m diabetic. Treat me special.”
They don’t need to know.

But with coeliac disease I can’t just order a gluten-free option off the menu (if they have one: not everywhere does).

I need to make it clear to the staff that
“I’m a coeliac. Treat me special. Please don’t poison me.”
I have to label myself.

Cross-contamination is a real risk. Many food ingredients have gluten hidden in them. Most soy sauce has wheat used in its production for example. But even when all the ingredients are gluten-free, the food preparation is important. If I eat meat that’s been cooked on the same grill that’s had gluten-containing food on it without being cleaned in between, I will react to the gluten. This contamination could come from a hamburger bun that’s been toasted on the same grill, or sausages with gluten-containing filling. Flour that’s been in the air can settle on my food and contaminate it. Fried food has to be fried in oil that has never been exposed to gluten (some places maintain two fryers, some blessed places go so far as to never fry things with gluten in them).

Luckily I have found many food vendors who do a very good job at providing gluten-free food. But each time I need to remind them, and each time I try somewhere new I need to be very clear about the requirements, draw attention to myself, and then hope that it’s all going to work.

Randomly “giving it a shot” and dealing with the outcome, or eating gluten “just this once” is not an option!

What if we could choose?

Having coeliac disease definitely changes my interactions with other people more than having diabetes does. If I somehow had the choice of keeping one of these conditions, it’s coeliac disease I would want to get rid of. Without hesitation.

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