Tolerating Intolerances: Life with a sensitive stomach

Introduction

In search of data to add to our Microbiome collection, we have recently attended several events where researchers mentioned the connection of gut microbiota with human health and disease. This has been particularly useful in understanding how a microbiota-friendly diet can play a significant role in managing syndromes and diseases.

Our marketing manager, Craig Smith, witnessed and described on our blog a case where diet was playing a significant role in managing autism.

Among many fantastic things that Craig is doing inside and outside of Repositive, he has been living with multiple food intolerances for more than 14 years. So, today we are talking to Craig about his own experience and views.

Q: I remember on the first day when you joined Repositive, you brought a fancy gluten-free lactose-free and something else-free cake and told us you were allergic to that stuff… So, how did it all start? How did you notice it? What did you feel?

A: I was around 18 years old and was working in a store room in Newmarket. I was quite energetic because I used to drink about two litres of coca-cola a day. I was addicted to coca-cola. I remember one day I took a sip of it and I just felt incredibly sick shortly after, and to be honest it never really went away. This intense feeling that I was going to be sick (but never was) lasted for about two weeks. I then went to my GP and they said there was an acid imbalance in my stomach and that’s what was making me feel sick. Obviously, they probed into my diet and obviously, I told them how much coca-cola I drank… I think it is pretty clear that drinking that much coca-cola is probably gonna do some nasty things to your stomach.

Q: For how long have you been drinking it?

A: I always used to drink coca-cola, but never that much. I got to the age where I started to earn money, became more self-sufficient and wasn’t relying on my parents for food. I was buying my own food from Iceland’s, the supermarket closest to my office. When I mean food I am referring to crisps, chocolate, soft drinks, microwave meals... all the bad things! I was on that diet for around two years before my IBS started. It was also a very stressful job, so I think part of it was stress and part of it was diet. Oh, and I was smoker too.

Q: Right. What did the doctor say?

A: At the beginning they said there was medication I could take that would help my stomach get better. They were supposed to give me a PPI (Omerprazol) but they made a mistake and gave me a tablet that made me produce even more stomach acid. I can't recall the name of the tablet, but I took it and I felt even worse. A lot worse. I went back to the GP, mentioned it to them, and it was then they realised that they had done the wrong thing. By that point I lost faith in tablets and medication, so I enquired into alternative ways to treat my IBS. I asked the doctors “What else can I do, because I don’t want to take tablets and go through that again?”. They said “Well, you could try controlling your IBS with your diet. You will need to keep a food diary to find out what food and drink would make you feel better and what would make you feel worse, but it could take years." And out of defiance, I did exactly that!

I kept a food diary quite religiously. I did it for a while and I kept trying, every time I fell ill, to look at what I’ve eaten shortly before but it was really difficult to trace the exact ingredient. So, after a few years of trying and not getting anywhere, I tried the opposite: I really limited my diet to not eating many things at all. Just things like rice, then maybe rice with butter and then eventually I would start introducing different things and that is when it became a bit easier.

Q: So, what did you figure out your intolerances were?

A: Gluten, lactose, caffeine. I say lactose but I only mean milk, cream, yogurt, soft cheeses. Hard cheeses are fine for some reason. I don’t quite understand it. If I eat mozzarella I will feel sick 10 minutes later. There is a brand of milk where they remove a protein that may cause allergies, I did try that milk but didn’t really see any amazing difference (other than the price!). So, I just decided not to use ordinary milk and use soya, almond and hazelnut milk instead.

I also noticed that it is not just food and diet but stress does make my IBS worse too! When I am stressed I hold it in my stomach. I get really tense in this area and I don’t think it helps. I laugh at work and say 'I am allergic to work' when referring to my allergies, but really, my body does not cope with prolonged stress. I have learned to let it go at the end of the day.

Weirdly, the doctors told me that alcohol wouldn’t help due to the acidity but I noticed that drinking a little red wine makes me feel better. If I feel ill, a glass of red wine can help me to get rid of the sick feeling in a few hours. But I’m not sure how much of that is because I feel de-stressed from drinking wine or whether it is something in the wine itself. Perhaps it's a placebo?

Q: What do you actually eat?

A: Interesting question! At the moment I eat very little carbohydrates. A few years ago I stopped eating gluten and bread and pasta and things like that unless it was a gluten free substitute. At the moment I eat soya yogurts in the morning, nuts, fruit, a lot of meat and vegetables. I substitute a lot of things, e.g. in a stir-fry instead of rice I will use spiralised courgette. I make my own rice from cauliflower. You grate it first then you fry it and it tastes similar to rice. I don’t necessarily do the carb thing for my stomach but for losing a little weight before my wedding, although I have noticed it does help because I think by cutting out carbs one also cuts out a lot of gluten.

I do eat rice or oats occasionally because I think it is not a good thing to completely go without anything... It’s like hayfever, after a while my body builds a tolerance and then I don’t feel the effects as severe. I think it's the same with food: if I didn’t have any carbs for a while then when I do eat them my body just goes crazy because it is not used to it.

Q: Do you know anything about the connection of gut microbiota to different diseases, including IBS, depression etc?

A: From interviewing Finley I know that he has a really strict diet and that this significantly affects his autism, so I can see that link now. I understand that there is good and bad bacteria in your stomach, and a balance of both is the best and an imbalance can cause problems, like IBS. I do not know of scientifically proven links between microbiota and depression, but believe me, at the height of my IBS, I felt depressed! It felt like it was taking over my life.

My nephew Finley outside Delisiously Ella's deli. Deliously Ella specialises in gluten and lactose free food

Q: Would you contribute your data to a research project? Why?

A: I definitely would, without a doubt. I still don’t really understand why I have this condition. To me, IBS is just a medical term to say you have stomach problems but without a specific cause. I would do it in the hope that it would tell me exactly why I have IBS, because I am sure I may be more strict on myself than what I need to be. I also know a lot of people who suffer from IBS, so I would do it because research might provide a solution for everyone. If there is something in our gut microbiota that we can change to stop IBS, well... it would be amazing!

Q: What exactly do you do at Repositive? Why did you choose to work here?

I am marketing manager; what I do is giving visibility to what we do at Repositive, why we do it and who we are.

In my family, all the members have different ailments; my aunt has panic attacks, my grandmother has migraines, my dad has hayfever and IBS, my mum has anxiety attacks... and I am the only one who seems to be blessed with all of them [laughs]. I guess, to a degree, I am here selfishly. I feel there is a lot wrong with me that I have to deal with myself and supporting science support patients is self-serving. But I think I do it more for people like my husband Samuel who has Tourette's Syndrome or my nephew Finley who has Asperger's. I do it for those who need it more, people whose daily lives are affected by conditions and diseases. I can manage my symptoms, and it doesn’t really interfere with my day to day life anymore, but for the people where it does interfere with their lives… I want to help them. I am not a scientist, so this is a way I can contribute and support.

Craig, Samuel and Finley being typical tourists in Brussels

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