The Gluten Freek – living with Crohn's and coeliac disease

Caleigh, the 'Gluten Freek', was one of the vocal and knowledgeable blogger-judges for this year's Free From Food Awards and no one would have known that she had had such a troubled digestive history.
She explains how she found herself to be one of only 600 people in the UK with both conditions, and how she deals with them.

I have lived with Crohn’s Disease for over half of my life.  I was diagnosed at age 13 following months of diarrhoea, vomiting, stomach pain and weight loss.  As a result of this disease being active for long periods of time I have lost my large intestine to surgery and I now have an ileostomy, after three years with a colostomy.  I have tried many treatments to control my Crohn’s, some more successful than others, all of which suppress my immune system and leave me prone to colds and infections. 

Five years ago, that I believed to be a flare of Crohn’s Disease presented some new symptoms which, after investigation turned out the be caused by Coeliac Disease.  When I was diagnosed with Coeliac Disease, my consultant told me that it was common to have both conditions but I struggled to find others like me.  Statistically, if 1% of the approximately 60,000 people with Crohn’s Disease also have Coeliac Disease, around 600 people in the UK are affected by both.  So, where are they?  I asked members of the CrohnsZone web community but came up empty and through the magic of Twitter I have only met a few people with Crohn’s Disease and Coeliac Disease. 

What exactly are Crohn's Disease and Coeliac Disease?

Crohn’s Disease is an autoimmune, inflammatory bowel disease that affects 1 person in 1000 in the UK and causes ulceration, swelling and pain at any point in the digestive system.  Coeliac DIsease is an autoimmune disease that affects 1 person in 100 in the UK where gluten triggers a reaction of the immune system that causes damage to the lining of the small intestine.  Two autoimmune diseases of the digestive system, both with similar symptoms, both if untreated leading to anaemia, osteoporosis, vitamin B12 deficiency, infertility and increased risk of bowel cancer.  What are the chances of a person having both? 

Automimmune conditions

Autoimmune disease runs in families and can present as various conditions and affect any of the body’s systems.  On top of Coeliac Disease and Crohn’s Disease, my family’s collective ailments include Myasthenia Gravis, Rheumatoid Arthritis, under-active Thyroid, Pernicious Anaemia and Nephrotic Syndrome.  With that genetic legacy, it is no surprise that I have such a confused immune system!  Additionally, according to the American Autoimmune Related Diseases Association (AARDA), it is common for people with Crohn’s Disease to have other autoimmune diseases.  So the chances of having both Coeliac Disease and Crohn’s Disease are not as slim as you might first think. 

Living with them both

If you imagine that I am full of self-pity for what life has thrown at me, you would be wrong.  Admittedly, I am not always brimming with positivity about my conditions; it can be difficult to live with both Crohn’s and Coeliac Disease.  Both have such similar symptoms, it can be hard to know which one is flaring up, it takes time and experience to distinguish between the two.  Nothing can change the fact that I have these particular autoimmune diseases, there is no cure, so I might as well make the most of my life with them.  Instead of just accepting that I have Coeliac Disease, I have embraced the gluten free diet and I celebrate the wonderful options that are still available on the menu (even when that option is steak and a baked potato, again).  When Crohn’s Disease is active it can be physically and emotionally draining, during those times I feel like I am surviving, not living, but I know that remission will come and I then I make the most of it. 

Listening to your body

After seventeen years of inflammatory bowel disease (IBD),  five of those with Coeliac Disease, I have learned to listen to what my digestive system is telling me.  In my teens, I lived mostly in denial about Crohn’s Disease and the effect it had on me, but over time I learned (mostly through mistakes) to pay attention to my intestinal health.  From my early twenties onwards, I often felt queasy after eating pasta dishes or Chinese food, and would find that my Crohn’s symptoms seemed to be worse the day afterwards.  I wondered if wheat might play a part in this, but I was never concerned enough to do anything about it.  I was lazy about my diet and refused to let Crohn’s influence what I ate.  When I was instructed to exclude dairy products from my diet during my teens, but I would often eat ice cream and deal with the consequences later, rather than miss out.  Ironically, the most liberating thing about my Coeliac diagnosis was the fact that I was in complete control of treatment for the condition; I could stop eating gluten and the symptoms would disappear, there was no reliance on medications.  I have much respect for people who choose to eat a free from diet, I had no will power to stick to it until it became a necessity.

Getting the second diagnosis

It is thanks to my history of Crohn’s Disease that I was able to get a diagnosis for Coeliac Disease far more easily than most people.  I am aware of the fights with GPs. struggles to be taken seriously and difficulty getting a diagnosis that many people with Coeliac Disease have encountered.   I was severely anaemic and extremely underweight by the time I turned to my GP for help, she knew me and my Crohn’s Disease well and acted quickly. I was already under the care of a Gastroenterologist, who concluded that those issues, plus the pain, diarrhoea, bloating and nausea, despite aggressive treatment of Crohn’s Disease, on top of the additional symptom of acid reflux was enough to warrant a gastroscopy to investigate the possibility that the Crohn’s Disease was in my stomach.  Fortunately, my stomach was clear of ulcers and a routine biopsy confirmed Coeliac Disease.  From bursting into tears in my GP’s office to Coeliac diagnosis, was three weeks.  I was also under the care of a dietitian, so I was able to get advice on adapting to a gluten free diet without joining a waiting list. 

Crohn's can be the more restrictive

Despite the fact that treatment for Coeliac Disease is the lifelong avoidance of gluten in the diet, I have found that Crohn’s Disease is actually the more restrictive of the two conditions, as far as diet is concerned.  When Crohn’s is active it is often necessary to remove any foods that might irritate the intestinal lining from the diet (often called a “low-residue” diet).  In practice, that means any nuts, seeds, raw fruit and vegetables, any produce with tough skins, fibrous meat products, sausages and dried fruit.  Now that I have an ileostomy, I am learning all over again what I can eat and what will irritate (or block) my new stoma.  I can live without the odd slice of toast or cake (and I can bake gluten free alternatives for those) but, the low-residue diet is so limiting that it can be tough to know what I can eat!  As anyone with Coeliac Disease can attest, ‘grabbing a quick lunch’ is difficult enough, and often the only option on the shelf is a salad - add an inflamed digestive system, and the salad is off the menu, too.

Learning to cook!

Living on a gluten free diet has shown me, in vivid terms, how what I eat can influence how I feel.  I was forced to read the ingredients labels on the foods that I ate most often and I found that much of what I was eating was highly processed and full of additives.  I decided to cook meals for myself in order to control what I was putting into my decidedly temperamental digestive system.  I found that my general health improved when I began to eat better, as did my energy levels.  In addition to an improvement in well-being, I discovered a (rather exciting) fringe benefit: as I gained confidence with gluten free ingredients I progressed from simple food to more adventurous meals and cakes, breads and desserts.  It has opened up a world of new ingredients that I would never have considered before, and cooking and developing recipes has quickly become my passion. 

The Gluten Free[k] blog and our Recipe Challenges

Managing two digestive diseases can be complicated, confusing and frustrating, however, it can also be rewarding.  Although life with Crohn’s Disease and Coeliac Disease is far from straightforward, it has taught me that I have far more strength and perseverance that I would ever have believed.  I started a blog as an outlet for the feelings I had after I was diagnosed with Coeliac Disease and through it I have had opportunities the meet others who eat gluten free. 

I have found other bloggers to be a rich source of information and inspiration, so I decided to collaborate with them to inspire others at Christmas-time.  I challenged a group of gluten free (and gluten free friendly) bloggers to come up with recipe ideas or product reviews for all those Christmas favourites that Coeliacs usually miss out on.  It was a resounding success and before the 12 days were over, people were asking for another challenge! 

Buoyed by the glowing feedback from “Free From & Festive”,  in March, I invited a bloggers to post a gluten free recipe using oranges as the main ingredient.  The idea was to create a dish based on a key ingredient and a few restrictions - in March, the recipes had to be dairy free and free from almonds, chestnuts and hazelnuts - as well as being gluten free.  Twelve bloggers took part and each posted an original recipe, each different from the next, and together we produced a catalogue of dairy-free, tree nut-free and gluten free dishes, both sweet and savoury.  At that, The Great Gluten Free Recipe Challenge was born!  I hope to organise bi-monthly recipe challenges, involving as many gluten free bloggers as I can in order to motivate others into the kitchen, the same way that all the blogs I read motivated me. 

By using web forums and social media, I have discovered that the Coeliac community and the IBD community are incredibly caring and supportive, and I have met some inspirational people who I am pleased to call my friends, and was honoured to be asked to judge in the 2012 FreeFrom Food Awards.  While I would probably change the physical symptoms of these two autoimmune diseases, I am not so sure I would want to change the experiences I have had because of them.

FollowCaleligh's blog and the Gluten Free Recipes Challenges at www.glutenfreekblog.co.uk

 

First published April 2012



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