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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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I like food. I like to make food. Eat food. Photograph food. Write about food. Mainly in London but when I am lucky or organised further afield.

36 Comments

  1. Ugh! You poor thing! I’ve never heard of lactose intolerance this awful, nor have I heard of people not believing it is a real problem, which I know to be common knowledge. I’m glad you set them straight, and that you’re feeling better! Rock on!

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  2. My son was diagnosed with Crohn’s/Colitis- depending on which Dr he sees, at 16. I had always thought lactose had something to do with it, as he was always quaffing the stuff down at the time. Now aged 25, and with medication, plus less milk, he is fine ( I hope I’m not tempting fate here because it can be the most dreadful illness).
    I understand a little and am therefore ‘tolerant of your intolerant.

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  3. I hear you! I have slow/delayed-onset milk allergy. As a child my allergy manifested itself in – slow weight gain, colic, and projectile vomiting as a baby, then in tummy aches, severe ear aches and dreadful hives every few months.

    I hate it that people think I’m picky- I’m not. i’ve always worked around around it, not made an issue of it, but it still causes raised eyebrows.

    I’m lucky in that my threshold is now better than it was a child – I seem to be ok with small amounts of cheese and yoghurt, but I’m still careful, and I know when i’ve had too much. Just feel ‘wrong’.

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  4. My sister has Crohn’s and over the years, with the different medications she’s tried, the things she’s found she can and can’t eat have changed. There was a stage where the only things that didn’t cause her pain were chicken, potatoes, boiled rice and cheese! That was a fun time.

    In the last couple of years, though, she’s found a medication that really works – and she’s also found that both dairy and gluten have an adverse effect on her condition. So she doesn’t eat either of them. She’s found a brilliant range of alternatives, to the point where she barely even notices she has a ‘special diet’ until she goes out to eat, but people really can be intolerant of intolerances! I remember going out for lunch with her a year or so ago – she ordered a salad, but asked for it without the advertised bread and with a dairy-free dressing. The couple at the table next to ours visibly rolled their eyes and had a not-very-subtle conversation about ‘these ridiculous fad diets’, looking my sister up and down and saying ‘it’s not like she isn’t thin enough already’ (another side-effect of her Crohn’s is that she struggles to keep weight on). Charming, isn’t it! So thank you for posting this – you’re absolutely right, people should think a little more about food intolerances instead of just labelling people as ‘fussy’!

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  5. Well said you!
    I’ve got wheat intolerance and my childhood experiences were almost identical to yours, only with wheat. My problems started as soon I went onto solids. It annoys me when no-one seems to say “jeez look at your skin, what are you eating?!” because the skin is the body’s way of showing inner health. I also get annoyed when people say “oh you’ll grow out of it” or “my friend had that, they’re OK now” – I’d rather they stopped trying to “help” and left me to it!

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  6. I do find it bad form when people scorn on those who have intolerances – it’s not a whim or fad as you say, it can be a living hell for many. Many the customer I’ve met who are literally ecstatic that they can find a decent quality diary free cake. I have found that there are a high number of people who are diary intolerant are also gluten / wheat intolerant too so I’ve doubled the cake range I make. The Allergy & Gluten Free Show is on this weekend at Olympia – there are some free tickets available if you google – they also have some good talks on this subject.

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  7. The lactase tablets are great! If only they were readily available over here lots of folk could be spared a pretty rotten time.

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  9. On a sliding scale, I’m not as lactose intolerant as you but there are things I just can’t stomach. My Mum is totally lactose intolerant as many Chinese are although my Dad is largely OK with it. I too get accused of being fussy and being able to eat some dairy, people think it’s funny to try and catch me out with my seemingly inconsistent stance. They usually leave it when I say lots of Chinese are lactose intolerant. I guess there are some people that think its OK to be rude and boorish about a medical condition but are horrified of being thought of as racist!

    Anyway a great post that I hope that will change people’s perceptions of what is no laughing matter.

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  10. i concur! you shouldn’t even have to explain yourself ffs. i think you are living proof than you can really, really enjoy food/ eating out/ cooking while restricting a food group. other folk need to concentrate on what’s on their own plate instead of griping over someone else’s. go niamh!!
    xxxx

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  11. Hi Niamh, as a long-standing reader-but-not-commenter thank you very much for posting this story.

    I haven’t had any exposure in the past to what it’s like to have a food intolerance, or how chronic the outcomes could be. Your story has opened my eyes a bit to the difficulties you and others like you have to deal with, and the importance of being more accommodating and understanding. It’s so easy for those of us who can shovel anything in our mouths without a thought to be casually dismissive of those who can’t.

    I’m glad you got to the bottom of your problems, and now have the knowledge and understanding you need to manage your diet effectively.

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  12. Good post Niamh. I am not intolerant of anything fortunately, but have had colleagues with LI and Crohn’s and now a colleague with coeliac.

    It is like saying someone can’t be diabetic.

    Well, sorry Refusenik chaps, it is real, it is not faddy, it is VERY inconvenient for everyone I am sure, but I bet it isn’t as inconvenient for you as it is for the person suffering…

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  13. I have a similar story, but with sucrose being my problem. People just do not understand this at all. I wish you only good health in the future.

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  14. Hey Niamh,

    Great post and glad to hear you’re able to indulge once in a while if you feel like it. Food can be such a sociable activity, so I imagine having an intolerance like yours can be difficult to deal with at the best of times. As for the comments from other people, they should probably be more concerned with themselves and not you! Chances are they’re the same people that freak out if you have an alcohol-free night!

    Helenka x

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  15. Thanks for writing this post – I too am lactose intolerant and it’s amazing how people think you’re just being faddy. I developed it in my early 20s (apparently quite a common age to get it) after a debilitating bout of illness.

    I have a friend who suffered for years, as you did, and her life has also completely changed after realising that it was something as simple as dairy that woudl fix it, though she’s ended up with mild IBS too as a result of a decade of suffering.

    But I too take the pills – in fact, I rely on them probably too much. I take Prolactazyme Forte and they are amazing! Much better than the Holland & Barrett ones. Took a couple of years to find them – the ‘brie-free years’. A sad time. But now as long as I don’t go insane and drink a pint of milk or ridiculous quantities of cheese, I can live a pretty normal life. And they mean I can eat yoghurt and blue cheese again, the things I missed most of all.

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  16. Honest and frank post Niamh – fantastic.

    Bring married to someone who has severe allergies and resulting food intolerances I know where you’re coming from and the impact on every day life (and what the future might hold) is huge.

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  17. The irony of it all is that the enzyme lactase – that breaks down lactose, is present in raw milk, but destroyed by the pasteurisation process! Another fine example of Man’s quest to solve problems creating other problems!
    There is something rather deliciously capitalist about charging people for destroying the enzyme, then selling that enzyme to them (in tablets) so they can enjoy the product!

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  18. What a lovely post Niamh and thank you for sharing your story. I think people are quite insensitive to others needs and it takes blatant explanation like yours to show them that you’re not just being fussy that it is painful and potentially life threatening. Good work!

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  19. if there is still question about celiac disease, you can always ask your doctor to check a transglutaminase level in your blood. Simple blood test…

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  20. You are right to feel this way; it’s something which I suffer from mildly (in conjunction with colitis, which is not mild) and I simply accept that if I eat cheese then I’m going to pay for it. But if someone offers me a cup of tea or coffee with milk in it, you should see the looks when I refuse – it’s like I kicked their cat!

    It’s a real problem, with real symptoms and real pain and is not trivial.

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  21. Thank you so much for telling your story! My daughter, age 18, had the same symptoms and had colic and eczema as an infant. Once we took her off dairy per a detailed converstation with our Naturopath, she felt unbelieveably better and her mental health improved as well, as she had become so depressed over her constant tummy aches and intestenal issues. Her skin has cleared up and her hair even seems healthier. Excellent post! Thanks for writing about something so personal!

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  22. Thanks so much for posting this. I thought for a moment you were writing down my story. I couldn’t stand milk or cheese as a kid and only started when I was about 20. Since then a lot of doctors visits and pain happened until I found out what my real trouble was. I lived completely dairy free for 2 years until recently I started with a very small dosis and it seems to be okay like this. I can have a sandwich bought from a bakery or eat in a restaurant once a week without big troubles. But living dairy free is not that hard here in Germany. We have Lactase pills in many dosis and we have goats milk and cheese. Try soya cream for some dishes (not sweet!) if you can. It’s really good.

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  23. Cool, very interesting read indeed as I was very fussy as a kid as well and had at least 20 things I could not eat for various reasons. Recently, talking to a homeopath, I was told that eczemas found in kids are often related to milk products… Not sure it’s true, but I relate to some of the things you say when avoiding cow’s milk for sure! Luckily, I’ve been able to eat most things again! Keep up the food eating and food blogging!

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  24. a brave post to write, Niamh. and youre a brave girl. my sister has some allergies so i know what it is like to have to watch what you eat- i admire you so much. x shayma

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  25. Maybe it is only natural to be lactose intolerant. Milk is for babies, nature did not intend it to be for grown-ups. Have you read The China Study? It has been proven that all animal proteins are bad for you, so your lactose intolerance is actually a blessing, preventing you from eating food that can cause really serious health problems like all the illnesses that we have in our rich countries and that poor people don’t suffer from because they have very little access to animal proteins.

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  26. Niamh I know where you’re coming from, several friends are lactose-intolerant and it’s brutal. My beef is with women who claim to be wheat/carb/food intolerant in general when in fact they often are just dieting (know too many of those, alas!) Good for you writing this post on what it’s been like to live with an intolerance to something you love, let’s hope Lactofree start producing blue cheese very soon! p.s. odd that you can’t get the lactase enzyme tablets here, doesn’t make any sense…

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  27. Gosh I am so ignorant of intolerances like this, luckily I suffer from none. I had no idea that lactose intolerance could cause so much havoc, very informative post. Thanks for sharing your story.

    Luiz @ The London Foodie

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  28. My other half has lived with Crohn’s since he was a teenager and after many painful years, strong medication and eventually surgery he is better. He adhears to a strict no dairy low gluten diet to keep it in remission. As a result I keep no dairy in the house. You’d be surprised at how many alternatives there are. I have learned to make a mean dairy free lasagna and pizza. To a guy that hasn’t had a slice of pizza in 10 years it was amazing for him.

    If you do have Crohn’s or other gastro problems if you have private insurance there is a great doctor in London Bridge Hospital (his NHS practice is at Guys & St. Thomas in London Bridge too). He also does research into Crohn’s to find a better cure. Dr. Jeremy Sanderson. He has a pro active approach to stop the problem before it gets worse not wait and then treat the flair ups.

    Good Luck! It is a serious condition.

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  29. You’ve hit a nerve because I have to care for a daughter with multiple food allergies from birth that goes like this:

    Allergies from Birth to:
    Dairy
    Fish
    Nuts
    Sesame
    Eggs
    bananas

    She’s now nearly 12yrs old and and in the last 3yrs she has grown up worse not better, they said at birth, that she would get better by now.

    She’s now highly intolerant to:
    Maize
    Soya
    both of which she use to tolerate and this now means she’s had to endure not eating her beloved popcorn with movies, or soya chocolate treats

    She’s also developed further allergies to:
    beans
    peas
    she use to tolerate these now they make her throat swell

    I’m intolerant to dairy but I can abuse my stomach now and again…if I abuse it more than a day I get stomach cramps, headaches etc
    My aunt gets mouth ulcers so she too avoids dairy…

    What gets my goat is the people who say they are intolerant to something when they are not

    …but EVEN worse is people who say they’re allergic to something when in fact they are intolerant….my daughter is so sensitive to fish she can’t be very close to a fish counter without her eyes swelling up…so when people say are allergic when they are NOT it really bugs me…because it gives the people like my daughter seem like it’s not a big deal and worse makes restaurants think it’s not that big deal if they get it wrong…..

    so….yes you’ve hit a raw nerve with your post :-)

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  30. Thank you so much for this. I can’t eat any milk proteins and am trying to find new ways of cooking and eating out. As an avid cook and adventurous restaurant experimenter I’m determined this will not curtail my enjoyment of food – but it’s hard. The more people talk of this as something one adapts to rather than a difficulty to be stigmatised, the better.

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  31. You poor thing – how dreadful! Especially (as you observe in your latest post) the Irish being a nation of dairy farmers, so much food is lavished with the stuff…

    Have you tried goats’ milk? I’ve had increasing problems with “normal” dairy but have found that since switching to our own raw goats’ milk, both of us here are so much happier & healthier. Hence we now craft our luxury goats’ milk gelato – seeing a child enjoy their first-ever ice cream or an adult after many years’ denial, makes all the hard work absolutely worthwhile.

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