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

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.
Six weeks after my first op we were due to be in the USA for the Formula 1 Grand Prix and a trip to Death Valley and Yosemite. We had to settle for a trip to Norfolk instead, it was still bliss to be out doing 'normal' things like having a drink at the pub!
Six weeks after my first op we were due to be in the USA for the Formula 1 Grand Prix and a trip to Death Valley and Yosemite. We had to settle for a trip to Norfolk instead, it was still bliss to be out doing 'normal' things like having a drink at the pub!
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.

Me in hospital following my first operation. The first time I saw the scar I cried as I thought I looked like Frankenstein's monster! My current scar is twice the size but I'm used to it now.
Me in hospital following my first operation. The first time I saw the scar I cried as I thought I looked like Frankenstein's monster! My current scar is twice the size but I'm used to it now.
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.

Just after having my hickman line inserted, this is how my chemo drugs were administered. Unknown to me at this time is that the surgeon had accidentally punctured my lung! A few hours after this photo was taken I was re-admitted to hospital for a week while they re-inflated it.
Just after having my hickman line inserted, this is how my chemo drugs were administered. Unknown to me at this time is that the surgeon had accidentally punctured my lung! A few hours after this photo was taken I was re-admitted to hospital for a week while they re-inflated it.
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.

Me on holiday in Lake Garda, Italy a week after my last chemotherapy session. Wearing my bag with pride!
Me on holiday in Lake Garda, Italy a week after my last chemotherapy session. Wearing my bag with pride!
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

Your Comments

An interesting read, I to are currently going through treatment for Enteropathic T Cell Lymphoma (cancer) in my small bowel as a direct result of being coeliac. I have had two bowel resections and been treated with chemotherapy twice, but it has reoccurred after both treatments. I am about to start a drug trial for reoccurring and resistant lymphomas.

Jeff Lloyd - 26th August 2017

Thank you for sharing Heidi.
I posted my story on coeliacs UK on Facebook yesterday, to raise awareness of bowel cancer. After several months of going back and forth to my GP surgery with same symptoms, and following a coeliacs annual review in March when a shared said symptoms with the nurse, who advised me to tell the dietician, who advised me to remove oats from my diet.
I next attended the GP in April told of the symptoms and dietitians advice. Also that removing oats had made no difference. I was referred for an endoscopy and colonoscopy. 28th May 2017 the consultant advised he was 95% sure he was looking at a tumour in my large bowel.
7th June this was confirmed from biopsy results. CT scans was booked for 20th June and surgery 29th June. Surgery was postponed because the scan showed tumour in liver, and so further scans were arranged. These didn't happen. On 5th July I had an emergency right hemicolectomy because the tumour had completely obstructed my colon with risk of rupture.
Following surgery, and pathology results, I was advised the cancer is extensively in my lymph nodes. Scan of 22 August showed tumour in liver has grown quite significantly since 20th June.
I had a Hickman line inserted 13th September, with chemo due to start 18th.
I attended oncology clinic on Friday. Had severe abdominal pain, and as it turned out, a temperature. I was admitted to hospital. Received fluids and antibiotics intravenously. Chemo is yet to commence.
I was diagnosed with coeliacs in 2010, following years of mis-diagnosis.
The symptoms I'd been reporting to the GPs at my surgery over recent months were attributed to coeliacs and possibly IBS. I didn't tick ALL the boxes for signs of bowel cancer. Not everybody does.
I shared my story to raise awareness and encourage individuals not to be fobbed off. When you have a condition that symptoms can be attributed to, it's easy and/or convenient for busy GPs to be remiss, and look no further. I want individuals to feel empowered to ask: "Could this be bowel cancer".
It was great to read your story ....... I hope you continue to lead a Happy Gluten and Cancer Free Life.
Best wishes
Dawn.

Dawn Campbell - 20th September 2017

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