One year on from an Unexpected Diagnosis of Coeliac Disease

How do you cope when you receive a new diagnosis?

It can often be a bit overwhelming, especially if it’s unexpected.

For me, when I’m faced with something new, after taking a few deep breaths, I feel the need to learn about the new condition. Learning about it helps me cope. Once I know a bit more about it, I can then deal with it better.

Almost a year ago, I was diagnosed with coeliac disease.

It came as quite a shock at the time as I didn’t have the typical stomach problems which tend to come with coeliac disease. I very quickly had to learn that it was going to be a life-long condition. But I always like to look for positives, and there was one. A big one. Coeliac is a manageable condition. No drugs, no treatment – just a change in diet.

Coeliac disease is an autoimmune condition. The immune system reacts when gluten is eaten. The stomach is lined with villi, little finger-like projections, which reach out and grab the nutrients from food. They help the body to absorb those nutrients. But when a person has coeliac disease, the villi become damaged if gluten is eaten. They are flattened and unable to absorb the nutrients, resulting in people being ill and becoming deficient in nutrients. 

Illustration of healthy and damaged villi  - coeliac disease
Healthy and damaged villi

There is no cure and no medical treatment for coeliac disease.

The damage done to the villi can be repaired simply by eating no gluten. Once repaired, it will start absorbing those nutrients again.

Coeliac disease is a serious condition. If the diet isn’t changed, conditions such as chronic fatigue, neuropathy, osteoporosis and stomach cancer can develop.

The learning curve of a new diagnosis 

Coeliac disease, gluten free - do not eat.

After receiving my diagnosis, and taking some very long deep breaths, I started learning.

I had always eaten gluten. I had never had any reason to check food labels. I had to educate myself about what I could and couldn’t eat.

“Cut out gluten,” sounds easy. 

Unfortunately, it’s not quite as simple.

It actually means not a crumb of bread. Not even a grain of flour. It means that I need to check every label on food. I can’t eat something which says ‘may contain traces of gluten’, because even a trace of it, could make me ill.

coeliac disease - cross contamination. Gluten free food.

Grocery shopping was daunting at first. Reading glasses had to be at the ready to read all the labels. Then there was disappointment if something had to be put back on the shelf.

Coeliac disease, gluten free - label reading

So many foods need to be avoided, food from the cold counter or delicatessen. Even if they don’t contain gluten, they might be sliced using a knife or slicing machine which had previously been used on something which does. Or the server might have just picked up some gluten containing food, then contaminated the ‘safe’ food.

When restaurants and cafés have anything gluten free on their menus, they tend to have maybe two or three options at most. But at the bottom of the menu, there is normally a disclaimer to tell customers that although it’s gluten free, they cannot guarantee that there’s no cross-contamination. I can understand why they need to do this. The cross-contamination issue is difficult enough in my own kitchen. It just takes a busy chef to accidentally stir two pans of food with the same spoon, and that gluten free food is contaminated.

Cross contamination is a serious issue. A crumb, one single crumb, from my husband’s toast can make me sick. Even using the same butter knife is enough to ‘gluten’ me. I have my own toaster in the kitchen, my own butter, and my own jam.

That probably sounds like an overreaction…but it’s not. That’s the deal with coeliac disease.

It all sounds daunting. Overwhelming.

In the beginning, it was. But now, one year on, it’s become a way of life. It’s really not that bad. It just takes time to get used to.

The good news..

Coeliac disease, gluten free - safe to eat

There is always good news. There is plenty of food which coeliacs can eat. Naturally gluten free food. And supermarkets do have a reasonable amount of bread, pasta and flour. They even have biscuits and cakes!

Like everything else in life, we all have different taste. I have tasted a lot of gluten free bread over the past year, and some hasn’t been too nice, but others have been delicious. My two favourites are Warburton’s white sourdough cob, and Tesco’s ancient grain cob. 

Thinking back to this time last year, I don’t think I ever saw myself becoming excited by bread! But I do. And when I am able to, I occasionally bake cakes, biscuits, quiches and pies – and they are all delicious.

There was, and still is, elation when I discover that something has no gluten.  Especially when it involves chocolate. I think I punched the air in Tesco a few days ago when I saw that tins of Quality Street were safe. They were safer in the shop though. The tin is almost empty now…they didn’t last too long.

To anyone newly diagnosed, I’d suggest, first of all, take some breaths. Then start learning. The Coeliac UK site is a great place to begin. Once you’ve had an official diagnosis after an endoscopy, don’t put off going gluten free. The sooner you do, the sooner those little villi can start repairing.

Do you have coeliac disease? What was the hardest part for you? Or have you been newly diagnosed? What’s your biggest fear? 

13 thoughts on “One year on from an Unexpected Diagnosis of Coeliac Disease

  1. Laurie

    Thanks for this, it’s really helpful! My son has just been diagnosed aged 6. We usually eat out a fair bit as a family and now I’m scared to go anywhere and to trust that what he is putting in his mouth, outside our house, is safe 😦

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    1. So sorry about your son, Laurie. When you go out to a restaurant, explain to them how careful they need to be. Don’t just say he needs gluten free. Tell them it’s coeliac disease, it normally helps them to realise it’s not just a dietary choice.
      Once you get your head around it, it won’t seem so bad, and your little boy will soon understand too. There are lots of treats and snacks which are safe, so he won’t need to feel like he’s missing out.

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  2. Hello there! I’m extremely grateful that you have learned how to manage your disease and have been able to keep yourself so well regulated. I recently (only about a year ago as well) was diagnosed with SCD (Severe Crohn’s Disease). It’s been a long, bumpy road, with IBS (Irritable Bowel Syndrome) and RA (Rheumatoid Arthritis) being thrown on top of things. Like yours, they’re all life-long chronic diseases that cannot be cured. But, also like yours, they can be managed. It takes a little more than a simple change in diet, but medication does just fine. My biggest fear is that maybe one day that medication just won’t be enough. But hopefully that’s not the case. Stay strong, and don’t let this new diagnosis control you. 🙂

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  4. Hi there, thanks for reading and leaving a comment. I remember my first visit to the dietician after being diagnosed. We talked about other conditions like yours, and I said I was grateful that mine is controlled by diet. I’m on enough medication for other problems, so to have a ‘disease’ which was solely controllable by diet, felt like a good thing. I hope that your medication always controls it – remember that there are scientist always working on new meds and cures. So stay hopeful always.

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  5. Thank you! very informative. Grocery shopping in the US, if you have food issues is nearly impossible. I find I must stick to preparing all my food from scratch from certified organic ingredients, and I avoid all grains, except rice on rare occasions. The industry puts grain products in almost everything!

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    1. Melanie, I remember being shocked during my first grocery shopping trip. I checked every label and gluten always seemed to be there. It’s in the most unlikely of foods. It really is pretty difficult to shop. We cook mostly from scratch, so can manage fine, but it must be so difficult for people who rely on ready prepared food.

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