Coeliac Disease : A Year Living Gluten Free

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Being diagnosed as having Coeliac Disease in adulthood was really difficult. I'd had 32 years being able to eat whatever I wanted. I'd enjoyed my life as a foodie, eating out often, trying new things and enjoying the freedom and convenience of a unrestricted diet. It isn't an exaggeration to say that being diagnosed coeliac felt like the end of the world. I felt like one of the key aspects of my personality had been taken away from me. I couldn't possibly be a 'foodie' anymore. I'm not afraid to say that accepting that diagnosis was a period of grief. I mourned for the food I could no longer eat. After a period of self pity and genuine sadness I began to get accustomed to my new way of life and it is an entirely different way of life, it's so much more than 'not being allowed' foods with gluten. 

The most significant change I've had to undergo is changing my daily diet. Removing gluten containing ingredients hasn't actually been too difficult. A lot of 'natural' products such as fruit, vegetables and unprocessed meats are generally  gluten free and it's easy to build a meal using these kinds of ingredients. As a general rule- the more processed the food is, the more likely it is to contain gluten. Things like sausages, meatballs and meats coated in sauces and flavourings are ones to keep an extra close eye on. I follow the BROWS method to check ingredients for gluten.

B - Barley

R - Rye

O - Oats

W - Wheat

S - Spelt

There is much speculation around whether barley malt extract needs to be avoided and some products marked gluten free do contain it in amounts less than 20ppm (the limit for a food to be declared gluten free) but for me personally I avoid it in all products unless the product is labelled as gluten free. There is also confusion around whether or not oats are gluten free, the confusion comes from oats being naturally gluten free but they are often grown and milled alongside wheat meaning oats have a high risk of contamination.  Personally I avoid 'normal' oats and opt for specifically labelled gluten free oats. 

A significant amount of people with coeliac disease find that after going gluten free they begin to have difficulties with other food groups. I've discovered that I am lactose intolerant and if I consume lactose I have the same pain and bloating as if I had consumed gluten. The difference with an intolerance is that it doesn't cause the gut damage, increased stomach cancer risk and malnutrition that eating gluten would cause. I do occassionally consume lactose and suffer the consequences but in general I stick to lactose and dairy free alternatives. I've also discovered that caffeine gives me headaches so now I stick to decaffeinated teas and coffee. 

Alongside changing my diet I've also had to take iron tablets. The damage done during the time I had undiagnosed coeliac disease has meant that even after a year of following a strict gluten free diet my gut hasn't yet healed enough to start absorbing the vitamins and minerals from my food. As soon as I stop taking the iron supplement, my levels drop and I become tired and dizzy and struggle to get motivated. I've also had to increase my calcium intake as those with Coeliac disease  have additional calcium needs to avoid osteoporosis. 

The area that has changed the most is the ability to eat out. Covid has obviously played a big part in everyone's ability to eat out but once the restrictions are lifted and meals out become an option- where am I going to go? A large proportion of my socialising is food based and I worry about being the 'awkward' one. I hate that the people I'm with are also restricted. If they want to enjoy a meal together then we've got to find somewhere that provides gluten free food and it may not be the place they really want to go to.  A lot of places that my family would go to are no longer an option. It's difficult being the one that people have to cater to and it's hard not to feel guilty. 

I've been hit quite hard by the lack of convenience that goes with having coeliac disease. Food to go is rarely suitable for coeliac sufferers and I really miss the convenience of being able to grab a sandwich for lunch on the go. I'm dreading trying to navigate holidays abroad and the thought of attending a barbeque brings me out in a cold sweat. We've (hopefully)  got a friends wedding to attend in July and I had my first experience of filling in the 'any dietary requirements' part of the invite and it made me really anxious. What will I get to eat?  Will it be safe? How much do the caterers know about cross contamination? It's a real worry putting your health in someone else's hands. The last thing I want is to spend the evening in the bathroom. 

This last year living with Coeliac Disease has taught me a lot. It's been a year of physical change, I now no longer get excruciating stomach pains and I've regained the weight I lost when I was malnourished (and a bit extra too!) but it's also been a year of psychological change. I've become less confident eating out, more anxious about becoming unwell and I've suffered with low mood due to not being able to enjoy things I previously loved (I'm looking at you KFC!). My relationship with food has changed, it's gone from something to be enjoyed to something to be cautious about and that is quite sad,  especially for a foodie such as myself but there's light at the end of the tunnel. I've got a new challenge now. To find the best gluten free products and gluten free restaurants so I can reinstate my foodie status. It's going to take more planning and more research and I won't be enjoying any more 'off the cuff' street food experiences but that doesn't mean I can't go back to enjoying wonderful, exciting and exotic food again. 

It seems a year isn't quite long enough to heal physically and emotionally from a diagnosis of coeliac disease but I'm healthier and pain free so I'm heading in the right direction.

 Thanks For Reading 

Katrina Fox UK based parenting blogger. Writing about Coeliac / celiac disease, Aspergers Syndrome and Autism, Pregnancy, Parenting and both Childrens and Adults Books


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1 comment:

  1. I have Coeliac disease and have been on a gluten-free diet since I was very young, but I was still extremely low in iron. Have you considered an iron infusion in hospital? It only takes about half an hour and will improve your iron levels straight away (your body will take about three months to start using it, however). Good luck on your journey!

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