Guest post: Dietary restrictions - "I was convinced people would think I was making it up"

[MumsnetGuestPosts]

When I first started following the most restrictive diet in the universe – known also as the Specific Carbohydrate Diet – I did, for a spell, think my life was actually over. Not only had I been diagnosed with colitis (the world's least glamorous condition), but I reluctantly had to accept that food, which was placed very much at the centre of my life, was partly the cause of my symptoms.

Initially, I'd been happy take medication and carry on as I always had, but after a bit of research I felt I had to at least give this diet – which reduces inflammation – a try. That meant saying goodbye to most of the things that I loved and cherished with all my heart. So, pizza, pasta, and Pringles, no more. Begone, Mr Kipling cakes. Fare ye well potatoes in every form. It was time to give up my reign as Queen of Carbohydrates.

Here are some things that I can no longer eat: sugar; all grains (so: no bread, pasta, couscous, polenta, rice or even quinoa); yoghurt (unless I make it myself, over 24 hours), cream, milk, chickpeas, sweet potatoes and potatoes, soya, broad beans and butter beans and soft cheese – although hard cheese is okay. Keep up at the back!

It's boring, isn't it? And I couldn't bear the idea of being the annoying, high-maintenance buzz-kill guest who turns up with a list of demands so long that it takes any joy out of getting together. And do you know why I thought that? Because I used to be that person - the one who did a slight eye-roll if someone said they were, say, lactose intolerant. I was convinced that someone would think I was making it all up to get some attention and feel a bit special.

I spent the majority of the first two years feeling a bit hard done by, sad - and hungry. I'd sit next to my husband trying not to cry because he could eat bread and I couldn't. At the beginning I was so deranged with deprivation that in bed at night I'd imagine myself eating slices of chocolate cake, salty chips, or cheese sandwiches, which actually helped a bit.

As far as my life went, it was like I'd gone into mourning. I felt embarrassed that I had colitis so I didn't tell people. I stopped going out – certainly to restaurants where you can never be entirely sure what lurks within the soup, but even over to the houses of dear friends. Because the problem with a diet like mine is you can't just wing it and hope for the best.

Stopping doing anything that involved other people cooking for me really shone a light on how much our lives – or mine at least – revolve around food: making it for others, them making it for me, chewing the fat over something delicious and a glass of wine. And, luckily, after a while I realised that the solution was not to withdraw from all these things that made life worth living, but to get my head around the diet and find ways to make the best of it. And you may not be surprised to hear that my nearest and dearest were practically begging me for lists of things I can't eat because they didn't give a fig about me being high-maintenance and just wanted to spend time with me.

That's not to say that it was entirely plain sailing. I felt so awkward going to stay with my lovely in-laws at first that I didn't explain as much as I should have. What I should have said is: "I've got colitis. It really is hideous and if I eat so much as the tiniest bit of a long list of stuff I will get really sick, and the way it works is that I will stay sick for up to three months. Believe me, I really hate having to be such a control freak."

I learned the hard way that no matter how much I dislike feeling fussy, being honest about my needs is far better than being presented with a slaved-over meal that I can't eat because I haven't been clear. There is now a very prominent list on their fridge of all the foods I can and can't have, and I have learned to live with the embarrassment.

I've had to become very brave and unselfconscious about interrogating waiters about exactly what is in the food. But, happily, the world around me is changing – restaurants increasingly have gluten-free menus, and people like the lovely Hemsley sisters and Deliciously Ella have come along and made it positively glamorous to follow a restrictive diet.

And there are many upsides to my restricted life: I've been medication-free for six years. And I am healthier than I have ever been (without turning into a sanctimonious health nut).

In taking control of my health, I've found that I'm not embarrassed about saying I have colitis any more. And I don't feel the need to add insult to injury by sitting in the corner quietly apologising for my decision to treat it with diet. Over the years I've started experimenting in the kitchen, and started a food blog, which is all about having a lovely life, based on my philosophy of focusing on what I can eat rather than what I can't. I've even worked out how to make delicious cakes. In fact my life, in many ways, is better now than it was when I was Queen of the Carbs. And I never, ever, thought I'd hear myself say that.

[cailineile]

I too am on a restricted diet for health reasons, but reading your No-No list makes my diet look indulgent. The short version is: I can't have meat, dairy/animal fat, oils or fried food, egg yolk, coconut, or processed foods. Everything is whole-food and cooked from scratch.

I haven't been doing this long, and I had my first meal out last week. I was terrified that I wouldn't be able to eat anything and that my friends would be looking at me in mix of pity and disdain.

I needn't have worried, everything went fine. We are lucky that it's so easy to check menus in advance online, and a quick call to the restaurant in advance can remove some potential hurdles.

I think I'll have to get used to making a bit of a fuss, and being a bit of a nuisance... and getting over that, as I am doing it for my health and not for the hell of it.

Would kill for some cheese though :-)

[SunshineAndShadows]

I'm a long term vegetatian, recently diagnosed with coeliac disease, and even more recently with longterm lactose intolerance I.e. Not the transient coeliac kind.

Thank you so much for your post. I've spent every beautiful sunny evening this week in bed with agonising stomach cramps, trying to sleep so that I can make it through the next working day. I'm already on a pretty restricted diet but do tend to 'wing it' as I hate being the 'fussy' one
I know I need a diet overhaul to reduce the inflammation I'm experiencing. Thank you for giving me hope that it's ok to be 'difficult'

[ppeatfruit]

I'm not ill BUT if I carried on eating a 'normal' diet I soon would be. there is cancer and heart disease in the family, oh and terrible arthritis. So as soon as I started getting pains in my hands every morning I researched eating for health and have discovered the Blood Type way of eating, plus the Hay diet and I follow Paul Mckenna.

Congratulations Victoria and Callinelle on having the guts to do what is right for you. I have a friend who is 10 years younger than me who is literally dying with colitis, but prefers to take the unsatisfying medication than give up a few things.

I tend to take my own food when we go out to eat so as not to upset people, but restaurants are getting much better at giving me what I can eat when we know them well enough.

I look on the positve side too and create my own lovely cake recipes without flour (sometimes with Kamut flour which i can eat) with almond butter, which is delicious , can you eat molasses ?

[StaceyAndTracey]

Thanks for this . I'm gluten free , which you woudl think woudl be reasonably straightforward . It's fine at home and when we eat out as a family and can choose the restaurant .

But when I go out with freinds it's always a nightmare. They love chain restaurants , which are just terrible if you have any dietary requierements. I have to question the waiter carefully and one of our group really hates it. She thinks im very rude and has told me so to my face !

Last time I ordered off the gluten free menu - GF chicken burger and salad . When I checked with the waiter , he said it came without the chicken burger and the bun . So that woudl be just salad then ?

My " friend " was really annoyed at me and made her feelings known . Presumably she thinks I should just eat it and be Ill for a week to save 5 mins of her time .

I've stopped eating out with this groups of friends because of her . But it's hard to sit there with a drink when everyone else is eating

I can't imagine what it's like if you have a more complicated set of allergies /intolerances

[MoustacheofRonSwanson]

In a similar position with a fodmaps diet, having tried SCD and other things too. It's taken 2 years to get to a place where I am fairly sure what I can eat without causing a massive flare up of symptoms that hugely impact my life. It seems really obvious to me that what you eat influences your health, especially people who have any kind of illness related to the digestive system.

But the number of people who are so rude, thoughtless and dismissive, when they judge people who need to eat carefully as "fussy" or "attention seeking" really disgusts me. The current favourite stick to beat people with is seems to be "well it's damaging for people who are really coeliac/have anaphylaxis isn;t it? All these faddy eaters are making it more difficult for people with genuine medical conditions".

I really don't get why people think they should have a right to dictate what other people eat, or ridicule people for wanting to be careful about their health.

[pootlebug]

I love food. I love eating food, and cooking food for friends. When you said "I couldn't bear the idea of being the annoying, high-maintenance buzz-kill guest" I thought - but you're not.
I have no problem with knowing in advance that people can't eat stuff for health reasons….however long the list of stuff is. My husband is Type 1 diabetic and does much better on a low carb diet. So long as I know in advance, I am totally happy to cook alternatives. What pisses me off is people who don't think to forewarn, who are just picky and push stuff around their plate looking arsey when they have no health issues whatsoever, they are just fussy buggers.

[ChickenMe]

I think a lot of people know that bread isn't that great, maybe they even get bloated but they are addicted and it annoys them to see someone managing to ditch the "poison"

[laineylou]

And just when I thought I was the only one on SCD. I just tell everyone I'm low carbing and pinch all the lc recipes from the Bootcamp threads . But it certainly helps my UC so I'm sticking to it

[Postino]

Thanks for posting this.

I was on the SCD for years and it put my colitis into permanent remission within weeks. Funny you should say it felt like your life was over when you went on the diet - that's how I felt at the worst of my illness, but the SCD gave me my life back (seriously, I was barely leaving the house).

You're braver than me, as I shied away from telling anyone about my condition, and therefore had to hide the fact I was eating differently. My family knew though.

In recent years, I've switched to the paleo diet, as it's more or less the same, and more widely understood. It's no surprise to me that many of us don't suit the modern diet, as approx 80% of it is made up of food we've only eaten for about 10,000 years (since agriculture), that's grains, dairy and sugar. We lived for about 2 million years without much of those things and our DNA has hardly changed.

I see grains as "fodder" now, suitable for ruminants with 4 stomachs, but not for us.

[honeyharris]

Really interested reading this thread, I was diagnosed with colitis two years ago and had to take mezavant while preg and breastfeeding. My son is nearly one now.and I've had a.couple of flare ups in recent months despite being on the medication still. I asked the colitis nurse about diet and all she said was tomatoes affect some.people, but there's no proven links.with diet. However it sounds like diet has transformed your condition?

[ITrulyMoustache]

I've recently gone gluten free to help with non coeliac autoimmune conditions and I'm still struggling with not apologising for it. I've found people are very dismissive if you don't have a more known condition like coeliac, and they treat you oddly as if you're just making it up. Such a shame because diet can cause so many issues other that the more known things.

[Looseleaf]

What a lovely article and makes me feel less alone.

I can't eat wheat, rice or corn and to begin with I was so embarrassed I occasionally just risked finding not something I could eat at people's houses or hid my lack of food with salad. But after a few reminders of how incapitated I feel on the wrong diet I now just explain with as much sensitivity as I can.
I'm interested so many references to colitis, and wish there was a big discovery in why so many of us seem to develop auto immune diseases and food intolerances

[Postino]

Looseleaf - experts on the paleo diet have made clear links between certain foods and inflammation. There's masses online, have a look. Two good real life stories here and here

Great book here

honeyharris - I've never mentioned curing my colitis with food to anyone medical, I'm certain I'd get a negative reaction. So sad it's taking all this time for them to wake up.

I'm actually a health journalist and I often feel it's my duty to get the word out more widely. Not really sure how to go about it, but I feel I should...

[marriednotdead]

A really interesting post, so good to read about a positive attitude

I don't appear to fit into a specific box- obviously the GP diagnosed IBS and waved me away with a prescription for Mebeverine- but have found low FODMAP to be a vague basis for the limited diet that works for me. A coeliac friend wryly observed that her diet was easier and less restrictive than mine!

I gave up bread around 3 years ago after a painful holiday in Italy, and ditched gluten amongst other things at the beginning of last year. My sister is sceptical of the benefits of such a drastic change as I still spend a lot of time in the bathroom. However for me, not having a constant burning in the pit of my stomach and agonising intestinal cramps that wake me every morning makes it worthwhile.

I actually think my 'IBS' was triggered by a nasty parasitic bug giardiasis that I contracted many years ago, my bowels have never been right since. A deep delve into Dr Google has found research to indicate that it can cause long term problems.

I too have taken to being extremely thorough with the finer print on menus, and make no apology for doing so. My mum watched in horrified fascination as my tummy doubled in size after I took a chance on a spaghetti dish on holiday, followed by two hours in and out of the loo in tears.

It can be awkward explaining my limitations and consequent symptoms to people, as the conversation invariably takes place as we are considering eating. I tend to say I have boring food issues. Luckily, there are several fairly standard menu options that I can manage- steak/grilled chicken, chips and salad is simple to find and prepare

I have an eggwhite intolerance which an alternative practitioner has suggested has been linked with the cultivation of vaccines on eggshells in the 60s/70s. She also maintains that the current explosion of autoimmune issues has a connection with the more recent practice of using human tissues for vaccine culture. Food for thought.

[ThumbWitchesAbroad]

Really pleased to hear how well your diet is working for you.

I read the Blood Type diet years ago in a spirit of pure scepticism, being a blood scientist myself - but some odd lightbulbs went on in my head so I thought I'd try it. Within days I'd stopped having a lot of the lifelong symptoms I'd put up with - no more post-meal nausea, no more acid reflux, no more IBS-type cramps, massive improvement in bowel function, no more bloating, far fewer migraines/headaches and no post-prandial doziness.

I've stuck with it for the past 15+ years and won't ever go off it. I don't really agree with the anthropological basis for it and think some of the science is a bit "off" but hell, it works for me!

At first some of my friends were a bit eye-rolly, but I've stuck to it, not changed what I can or can't eat, and now they're all completely used to me. The change in general attitudes to "free from" foods has been a godsend; and just recently I was in the UK and we went to Zizzi's with a large group of friends for lunch. I was thrilled to be given the "Allergen Menu" which has several different sections, depending on what you need to avoid - apparently this is a new thing that was introduced last year in the UK, restaurants have to provide allergen information for everyone - fantastic!

Anyone who gets angry that you are trying to improve your health has psychological problems, IMO - StaceyandTracey I was completely disgusted at your "friend" and her ridiculous attitude, what an insensitive and rude bitch she is! I really hope you don't see her any more because she certainly doesn't have your best interests at heart!

Anyone who doesn't think that diet has an impact on their health is pretty stupid, and that includes doctors. They're quite happy to tell you not to eat saturated fat and cholesterol because it makes you ill/gives you heart disease (apparently, although actually not really) - but removing certain food items to reduce inflammation couldn't possibly have an effect? Talk about a lack of joined-up thinking there!

I used to say to people that food might be fuel, but if you put the wrong fuel in, then your body won't work properly - much like putting petrol in a diesel engine, for example. Or rocket fuel in a car. Some people accept the analogy, others refuse because they can't bear the thought that the foods they love might actually harm them. My sister, for one - she cannot and will not give up the foods she eats, even though it might improve her health enormously and reduce her risk of type II diabetes, something that is in our family.
A good friend for another - she was actually a diagnosed coeliac as a child, but apparently "grew out of it" - not really, what happened was that her symptoms reduced in severity so she put up with them rather than restrict herself. 30 years later, she's finally gone GF again - and confessed that she feels SO MUCH BETTER - not so much physically but her moodiness and hormonal responses have improved beyond belief. She can't believe how much better she feels and wishes she'd listened to me 15 years ago now .

Rambling on a bit! Thank you for this thread and good luck to everyone who needs to stick to a restricted diet for health reasons - you're doing the right thing, ignore the naysayers and get rid of them, they really don't have your best interests at heart!

[ThumbWitchesAbroad]

Sorry, just need to change this comment:
"Anyone who doesn't think that diet has an impact on their health is pretty stupid, and that includes doctors."

No - anyone who refuses to acknowledge that diet has an impact on their health is pretty stupid. Some people don't know much about it, so that's not their fault - but if they're told and refuse to accept/believe it, then that makes them wilfully stupid, IMO. Including doctors and other healthcare practitioners.

Even Hippocrates had this one covered - "Let food be thy medicine, and let medicine be thy food" - he knew.

[MelanieCheeks]

I'm interested in how to remove sugar from your diet? Does that include the small amounts of sugar in vegetables?

[addictedtosugar]

When you have medical reasons, and you tell me, in advance, in detail, what I need to aviod (or supply), I have no problems.
The people who spring it on you, after dietry requirements have been requested, that no, actually you may have cooked lasagna for 18 people at centre parks, but you cant eat gluten or lactose, I get a bit miffed.
When you round off the evening eating apple crumble and custard (containing gluten and lactose) I get pissed off.

So, if you have a valid reason, and stick to it like many of the pp, there are no problems. Its the people who chop and change, and follow a diet because they feel like it, or stop following it when something attractive comes along that, imo, cause the problems. They make it seem like any restrickive diet can be dropped if you feel like it, and as many of the examples above show, it isn't that simple if you truely need to exclude food groups/types.

[MoreBeta]

Hi All

Really interesting read.

Yep! Non coeliac gluten and lactose intolerant here. I am totally wasted for two days if I eat gluten. Many other symptoms go with that. I just cant have 'a bit' as I pretended to do just to please people if I was eating out with friends.

Been there too apologising for what I don't eat. Now I offer to take a pudding if I go to stay with anyone and my own bread and tell them no cream, flour and ready made sauces in things. I emphasise what I can eat rather than what I cant. Main courses are easier for other people to make. Meat and two veg is what I tell people and they can relax then.

I also interrogate chefs in restaurants. I can do this with impunity as l went on a foundation course to begin training as a professional chef so I learned how to make quite complicated food properly. I am no Gordon Ramsey but can still enjoy high quality food and make all of it myself. I can make most restaurant meals to a decent standard and I know what slovenly tricks chefs get up to such as flour based thickeners in everything. It is not necessary and many places now are much more aware - even some chain restaurants (eg Zizzi) are making a good effort.

My wife never cooks - which makes her happy too!

In other words I have embraced it and stopped apologising and focus on making everyone else relaxed they will not accidentally kill me and they dont have to do complicated food for me.

[ppeatfruit]

Melanie No any naturally occuring sugars e.g. in fruit and vegetables is alright for most people I think . The worst sugars are in wheat (for raising your blood sugar levels faster than normal sugar). See Wheat Belly by William Davis M.D.

Thumbwitches Hello You are of course right, the thing is, dsis can't get her head round my 'restricted' diet and she's usually sweet but like so many people takes my health as an implicit criticism of her own bad health due to her ignoring (very gentle) advice from me. It's funny she suffers from bad headaches, and has pepper in EVERYTHING, she gave me some peppery soup, and I had a headache the whole of the next day (I never usually have them!) but she would've looked at me like this if I mentioned it.

If doctors took the blood type seriously and advised even a few people to try it think how little work they'd have and also the drug companies would loose money, we can't have that can we

[MarvellousMarbles]

Good post. I have two coeliac DC, which has transformed my attitude to food intolerances (I too was a bit of an eye-roller, I'm ashamed to say).

I think that in fact, we'd all be a lot healthier if we took notice of what goes into our food and had easily available options to avoid the crap. And I am rapidly coming to the conclusion that most grains are in fact crap for most people.

[chocoluvva]

You know the expression this has 'struck a chord with me' well this has played every key on the piano for me!

I took multiple supplements, herbs and vitamins, ate no refined carbs, yeast, vinegar, mushrooms, dairy, almost no fruit, minimal nuts and pulses, no alcohol or caffeine, egg white, oats, salmon, white fish and only minimal wheat for six months in the hope that my food intolerances, chronic fatigue, nausea, sore throats, candida and aches and pains would sort themselves out. My symptoms improved but never got completely better, feeding the family was difficult and I was losing too much weight and over the next three years I began to eat more refined carbs though little alcohol, yeast, refined carbs and none of the worst of the intolerances; dairy, egg white and most fish. However since I started changing my diet I developed new intolerances to rye, rice, corn, carrots, celery, squash (courgette, butternut squash etc), lamb and redbush tea!!

I strongly suspect I'm slightly intolerant to loads of food that I still eat such as alliums and brassica - there's not much left to eat! Also, four years ago I was diagnosed with stage 3 bowel cancer and had to have all the treatment for that.

Recently I've been spending time at a Buddhist centre, where most people are either veggie or vegan and DD's partner is trying to go vegan. I would love to eat less meat but I'd starve, but I still feel bad (inferior) about eating so much meat (especially when I had bowel cancer - my mum died of bowel cancer four years before I was diagnosed).

I just can't summon up the energy - I still have chronic fatigue - or resolve to try to eat very healthily again and look after myself properly and I get so fed up of the disbelief and disapproval from people like my MIL.

(I am very aware of the irony of my username - I always have some (dark) chocolate in my handbag ).

[laurierf]

What a great food blog you have Victoria. I found the SCD on line some years ago when a friend was suffering terribly with UC. He liked beer and chips and I wasn't sure he'd go for it, but things were so bad he said he'd give it a go. It worked wonders despite his doctor's scepticism - you can't argue when someone goes into remission for years. Will be trying out some recipes myself, mainly because a lot of the grain alternatives are vegetables and so it's a great way to get in another one of your 5 a day even if you don't have allergies or illnesses relating to diet.

[bottersnikes]

A great post, thank you!

I am also following a restricted diet after almost 2 years of IBS, stomach pains and bloating. Coeliac tests were negative but since giving up gluten and dairy and following a low FODMAP diet, gradually my symptoms are improving. I have also noticed that my hormonal headaches and intense mood swings have abated, which is a bonus I hadn't expected!

It's really interesting to read what someone mentioned about the long-term effects of a parasitic bug; I got a serious dose of something many years ago in Egypt and wonder if that is at the root of all my food problems.

I've found eating out to be OK as most restaurants I've been to have a really good GF/dairy-free selection. Family can be trickier as they know I used to eat everything 10 years ago so don't quite see why I can't eat it now, or why "just a small portion of lasagne" isn't a good idea any more!

As Victoria rightly says, society's attitudes to food and diets is changing and it is becoming easier to find recipes that are just as good, if not better, than what we had before. All I need to find now are some places offering tasty, imaginative gluten and dairy free afternoon teas, and I'll be happy :)

[marriednotdead]

bottersnikes here's the article I mentioned