Intolerant of Intolerance: A Personal Story

Everyone has got an opinion – I have plenty of my own. What grates is when people have got an opinion about something that they have no experience of, especially when they’ve got it completely wrong. I’ve seen many posts accusing lactose intolerants of being food intolerant, for reasons relating to weight, fussiness or the bizarre notion that it’s trendy or a middle class affliction. Jay Rayner had a rant on the Guardian, Ms Marmite Lover had a rant on her blog. I’ve even had people tell me that they are lactose intolerant but can eat milk and cheese, so what’s the issue with me?  So, I thought it high time to share a lactose intolerant side of the story.

Being lactose intolerant is not a choice. I adore dairy. I love butter, cream, cheese, buttermilk, I love it all. But it doesn’t love me. It wasn’t clear until my mid 20’s that it was an issue, but for reasons as yet undetermined I was very ill. I have always had trouble with my tum and bowel, and it was accepted from a very early age that that was just the way I was. As a baby I had terrible eczema (my poor mother, only 21 years of age, claims I looked like a skinned rabbit every morning when I woke). I had extremely bad colic, and I was always in pain. My GP advised my mother to water down my bottle and see if I improved. I did, a little.

When I was able to vocalise what I would and would not eat, and boy was I fussy, I refused milk, cheese and butter. There was no reason that I could remember. I would occasionally have butter on a biscuit, but dreaded milk I would not touch. I did love yogurts, custard and cream. My mother tried everything, flavouring the milk, sneaking butter in my jam sandwiches, but I always spotted it and refused. The funny thing was that I didn’t hate the taste, I just hated the idea of it. As a result, it wasn’t until my teens that I started eating dairy, and that was when I started to feel ill.

I always had a funny tummy and once was out of school for several weeks because of it I remember in university being struck by a severe pain and rushing to the doctor. No one knew what it was. After several more of these I was diagnosed with a problem with stomach acid, potentially an ulcer and was put on proton pump inhibitors. In my Masters year I started to get a problem with my eye. It was extremely painful, and prevented long periods of study. A consultant was flummoxed and announced it was a thickening of my cornea usually only seen in older men exposed to too much UV light. I was prescribed topical steroids which I applied daily to keep it at bay.

A year and a half later I moved to London. I ran out of my steroids and my eye started to hurt once more. My childhood eczema had returned and I had a lot of bowel pain and bloating. But I was used to this by now and didn’t figure it an issue, it was just the way I had always been.

I went to the local GP and casually requested a prescription for my steroids. She was shocked, how long had I been taking them, she asked? A year and a half, said I. She was gob smacked, 6 weeks should be the limit. So then was I. She sent me as an emergency patient to Moorfields Eye Hospital and by lunchtime I had seen ophthalmologists and had been referred to a gastroenterologist who did an impromptu internal investigation. We think you have Crohn’s but you should see a dietician also, so that we can rule out problems with your diet.

I trundled off to the dietician and told my story. She wondered if I was celiac and/or lactose intolerant. She explained that the symptoms can be quite awful and in some cases can result in depression, with your body being so battered over a prolonged period of time. I left clutching the details for a two week exclusion diet, saddened but hopeful. I was then, as I am now, obsessed with food.

Two long weeks followed, and traumatic as it was, I was really starting to feel better. The bloating was gone, the pain in my intestine vanished, my skin was clearing, and my eye less painful. I started to reintroduce dairy and it was immediately and painfully obvious that that was my problem. Each time, within half an hour, I was struck with intense shooting pain, and horrendous and sudden diarrhoea. So, that was that for me.

I stayed off all dairy for 6 months, and the results were incredible. I felt so light and healthy, my dress size dropped twice. I was still eating lots, I was certainly not dieting, but the lack of dairy and associated bloating made an amazing difference. My skin was clear, my eye was healed. I had read about being able to establish a level of tolerance by introducing small amounts and thereby encouraging/training your intestinal bacteria to digest by proxy. I tried, I failed, I was so disappointed.

So, how can I eat dairy now? I eat it rarely, and as a treat, accompanied by digestive aids that a friend sends from North America. Lactase enzyme, bought as tablets, can help you to digest. It’s used very commonly there, and an ex-colleague brightened my life immeasurably when she introduced me to them. Happily, it’s now possible to buy lactose free products, made by Lactofree, which I now use at home all the time. When will they make cream and blue cheese? I hope soon.

So, there you have it. Hopefully this will shine a light in a dark corner. We’re not fussy, we’re not food intolerant, we just can’t digest lactose. Some can digest more than others, some none at all. It’s painful and can have some serious side effects long term. It’s not as bad as an allergy, but that’s not to say that it’s not serious.

So, be kind, and be tolerant of us poor intolerants.

Photo courtesy of meantux under a creative commons license.

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Written by Niamh
Cooking and travelling, and sharing it all with you.