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Thursday 18 September 2014

Guest post #4 - Living with a food intolerance

My fourth guest blog post is written by Clare, my lovely colleague from work. 

I'm intolerant to all short-chain carbohydrates. This includes fructose, lactose, sugar polyols, fructans and galactos and I react to all of these in the same way lactose intolerant people react to milk or cream. It’s tricky; avoiding lactose is relatively easy but all of these other types of sugars are in just about everything... or so it can seem. You can find a very basic list of problem foods here.

I think I’ve been this way for around 15 years now. Of course it didn’t start out this bad but it got progressively worse and before long I didn’t even realise I was arranging my life around my symptoms.

You may have experienced digestive issues yourself if you’ve taken antibiotics? Well this can be permanent. Overuse of antibiotics: ruins your stomach, ruins your immune system and ruins life-saving drugs for those who actually need them. The over-prescribing of antibiotics is a national disgrace in this country - although I should say at this point the depletion of lactase (the enzyme which deals with lactose) is a completely normal, natural process and happens to lots of people. Here in the UK we have developed a much higher tolerance to lactose than other parts of the world because of our reliance upon dairy products.

How did I find out about this? I was desperate. My condition was impacting upon my ability to focus on my work, holidays and evenings out. I was in pain every single day and my GP couldn’t come up with anything, so every morning before I went to work I researched my condition and kept coming up with the same thing; short-chain carbohydrates, or indigestible proteins.

Avoiding these proteins has meant a lifestyle change but I am lucky because my partner is incredibly supportive and he was determined that I was going to get better. Now it's like second nature to both of us.

Understanding the link between my food and my health has changed my life. The hardest thing for me is other people's attitudes. Most people are great but here are some of the annoying things people say:


1. “But how ill are you?” How ill would you like me to be? If I tell you I might not be able to go to work tomorrow, perhaps that will be ill enough for you. (In case you’re wondering how ill I used to be every single day of my life, I came back from India at the beginning of the year with Campylobacter and assumed for weeks that I had developed a new type of intolerance because the symptoms were the same.)

2. “I don’t think there’s garlic/onion/cream/fruit in that, go on eat it, you’re probably fine.” Only people who “probably” won’t see me being ill the next day say this to me.

3. I’ve experienced people watching me like a hawk while I eat (which makes for a most uncomfortable dining experience): “If you can eat that, how come you can’t eat this?” Well you know those short-chain carbs I’ve told you about repeatedly? Because of those.

4. “All of this seems like a bit too much hassle really.” Well I’m fine with it because it’s a lot more hassle when I can’t go to work, or have to take a day out of a skiing holiday, or leave a spin class, or not go out for the night.

5. Unbelievably I had a waiter tell me that there was no garlic in hummus. Seriously. If you don’t know I’d rather you just say.


Understandably, the very annoying craze for feigning gluten intolerance can make people a bit wary of pandering to those who profess to have dietary requirements on medical grounds (see annoying thing 1). I met someone like this a few weeks ago and when she told me about her “symptoms” I found it difficult to take her seriously in any capacity. In essence, she described the symptoms of someone who eats too many carbs at lunchtime.

And from the perspective of someone who doesn’t have any issues with food, unlike Coeliac (gluten intolerance) or straightforward lactose intolerance, it must be very difficult to see what this broad range of foods might have in common. What could an avocado have in common with wheat and onion?!

On the bright side (every cloud...) this experience has definitely given me a much better understanding of the challenges people who are far worse off than me must face every single day of their lives.

I often get requests from well-meaning people for definitive lists of what I can and can’t have, even though I usually insist on bringing my own food everywhere, but sadly there isn’t one. However, Monash University in Australia do a sterling job of leading on this area of research, closely followed by Kings College. I am lucky that Monash have tried and tested lots of foods and put it all in a convenient app but anything they've not tested is trial and error.

Possibly one of the best sources of information is www.shepherdworks.com.au

Sue Shepherd is the last word in nutrition and the FODMAP diet, which was developed by Monash.

Twitter is a great place to link in with fellow suffers and I got some of my best advice for travelling this way.

How do more GPs not know about this? I'm not sure because it's very common to be intolerant to more than just lactose - yet the focus is only usually on lactose intolerance. If my experience seems familiar I would recommend finding out more. It’s unfortunate that I have a high level of intolerance to all of these sugars but never fear; you could well find that you have a relatively low intolerance to just one or two sugars which are easily avoidable. Or your intolerance might be so slight or infrequent that to “do nothing” will work out better for you.

Either way, rest assured that you can still have a very healthy, varied and tasty diet with a bit of imagination, perseverance and a little help from your online friends :)

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