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Heidi: 'Bowel Cancer Stopped Me Being a Naughty Coeliac'

Heidi used to cheat on her gluten free diet, here she shares of story of bowel cancer and how Coeliac possibly played a part in causing it. If you cheat and don't always eat gluten free, you may want to take heed.

Added 17th August 2017
Updated 13th December 2020

Heidi: 'Bowel Cancer Stopped Me Being a Naughty Coeliac'
While browsing through Instagram I came across Heidi's brief story about her battle with bowel cancer. I was so taken in by it, I asked her if she'd write a blog for us. Some Coeliacs don't take their diagnosis seriously enough and Heidi's story just tells the tale of what could be. This is Heidi's story of Coeliac and battling bowel cancer written by her.

PS Make sure you go and follow Heidi on Instagram - Gluten Free Heidi

In late 2008 I was a newly diagnosed coeliac and went food shopping to see what I could now eat as part of a gluten free diet. When trawling the aisles reading label after label I began to despair and I left the supermarket empty-handed and in tears. I rang my now-husband dramatically exclaiming: "I can't eat anything anymore! Everything has gluten in it!"

This all sounds rather dramatic but in those days (imagine it in sepia...) supermarkets did not all have a free from" section, most restaurants looked at you like a crazy person if you asked them if they did anything gluten free, and the gluten free food available on prescription was dry, crumbly and disappointing!

As you may be able to tell, food is an emotional thing for me. I love food! Food is life, literally! And I get rather upset if I can't eat things or when I get very hungry. My family and friends fear me getting into a "hangry" state and when events or trips are planned, consideration has to be made to ensure that "hangry Heidi" (or "the grump" as my husband calls it) does not make an appearance, because it's really not a pleasant experience for anyone! And this is why I always carry gluten free snacks.

So in 2008, following my coeliac diagnosis I was not happy. Yet, after seven years of experiencing stomach upset, bloating, sickness and insane levels of tiredness (because I was severely anaemic), I could see within a matter of weeks that following a gluten free diet was making me feel much better, so I begrudgingly stuck with it, and got used to it, and since then the availability of gluten free foods is mind-blowing, life is much easier for us coeliacs these days!

But I have a confession to make. After a few years of sticking to my gluten free diet I still felt a sense of annoyance and upset if people were eating things I couldn't! So I was sometimes a naughty coeliac! It mainly used to be when I was eating out and I used to get genuinely upset if I'd see other people eating the food that I wanted. So sometimes I would have a cheeky piece of cake, or a small piece of bread. I also started to be less rigorous when checking ingredients on things like crisps, sauces and frozen products and this was spurred on by the fact that after years of eating gluten free I didn't get any symptoms when eating these delightful but naughty things! I didn't do it that often, maybe once a month, but looking back it was a silly thing to do. I was endangering my health and I can see now that I was putting my life at risk by not taking my coeliac diagnosis and its associated risks seriously.

At the time I thought because I wasn't getting stomach upsets or feeling tired then maybe I was a "lucky coeliac" and could occasionally have small amounts of gluten without causing an issue. Another confession I should make here is that I don't think I ever fully understood what a serious condition coeliac disease is and the ways in which I was potentially damaging my body by eating gluten and not checking ingredients on food products that I assumed were gluten free. In some ways I wish I did get "glutened" and feel unwell after eating the things I shouldn't but I could be a naughty coeliac and totally get away with it!

In August 2016, I found a large lump in my abdomen, which I thought was a hernia. I had got into weight training at the gym and assumed I had somehow injured myself by lifting a weight too heavy for me. I went to my GP who sent me straight to the hospital for a CT scan. The next day my world was turned upside down when the doctors told me I had cancer. Biopsies later confirmed it was bowel cancer and on September 2nd 2016 I underwent a 4 hour operation to remove a tumour weighing 1 kg from my small bowel.

I ended up with a temporary colostomy bag and was dismayed to discover that the surgeon could not remove all the cancer because it had spread to my lymph nodes. He couldn't cut out some of the affected nodes because they were too close to the blood supply to the bowel and too risky for him to remove. This was a tough pill to swallow. I might not ever be cured!

Following this, I had eight rounds of chemotherapy (each round more hideous than the last) and I consider myself one lucky lady because the drugs worked so well that the cancer on the remaining nodes shrank significantly. This meant that in July of this year, I was able to have these nodes surgically removed and have recently been told that I am free of active cancer and in remission.

The doctors have not told me that being coeliac is the reason for me having cancer but I cannot help but feel I might be partly to blame for the traumatic year that I have just experienced!

My surgeon told me that as a coeliac I am pre-disposed to conditions such as bowel cancer but that he considers my diagnosis to be a "random occurrence". He believes this because of my age (I was 36 when diagnosed) and because I'm not overweight, I don't smoke or drink and live a generally healthy lifestyle.

Still, having read up on the types of cancer coeliacs are at risk of if they don't stick to their gluten free diet, one phrase keeps cropping up adenocarcinoma (a type of tumour) of the small bowel. This is exactly what I had and in my mind I can't help but wonder if I had stuck rigorously to my gluten free diet if any of this would have happened.

I could be wrong about this. After all it took seven years to get diagnosed with coeliac disease so perhaps the damage to my small intestine was already done and this is something that has been lurking for years.

I'll never know for sure but one thing's for certain I will never ever be so blasé about my health ever again! There are worse things to live with than coeliac disease and I know many of us get frustrated about the things we cannot eat.

Yet when you go through chemotherapy you can't eat anything without feeling sick! And when you've had bowel surgery the pain is indescribable and the frustration of waiting for your body to heal is very tough. Having a colostomy bag massively limits what you can eat; you have to avoid fibrous foods, lots of fruit, salad, beans and anything that causes wind (i.e. garlic) results in a blown up bag, leaky poo and embarrassing smells! When compared to the frustration of not being able to get a sandwich or cake at lunchtime, it's really a no brainer!

Cancer is a terrible thing to go through. When you have cancer your family and friends essentially have it too. My poor husband has been with me every step of the way, through the sickness, the crying, and the leaking colostomy bags! My supportive friends and family have had to see me at my worst when going through treatment and often when seeing the sadness in their eyes I'd wonder if my lax attitude to gluten had something to do with it.

Since my diagnosis I have become a stickler for eating gluten free and thankfully every one I know now is also meticulous when checking ingredients or foods I can eat. When eating out I question waiting staff in detail about what is in their meals, which can be a frustrating experience but telling people you've had cancer is a pretty harsh but swift way to get people to take you seriously!

I feel incredibly lucky and grateful to now be in remission but every day I live in fear that cancer could strike again, meaning more operations and second line chemotherapy. I am unsure if this feeling will ever go away. I just try to push these thoughts to the back of my mind and enjoy my life.

I am still as passionate about food as I was all those years ago when I was first diagnosed with coeliac disease. I love to cook and try out new recipes and products and feel that the coeliac community are lucky to have so much gluten free choice. I started an Instagram account this year (Gluten Free Heidi), I love to share my creations and food experiences and I am always looking for new ways to enjoy gluten free eating.

I hope that my story can convince any naughty coeliacs out there that having a cheat day or not carefully checking what you are eating can be a dangerous business. I wrote this article because I want people to know that the link between cancer and coeliac disease is real. I'll honestly never know if my reckless attitude towards eating gluten caused me to have cancer, but believe me when I say, it's just not worth the risk.

Written by Heidi Wilkins

Update February 2019
Since Heidi shared her story with us her cancer returned, less than 2 years after her first diagnosis, she is currently undergoing chemotherapy and is responding well to treatment. She has recently started a blog following her cancer journey if you want to check it out.

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