Having food intolerances can be debilitating and disheartening. I have had symptoms for the past 10 years, but went misdiagnosed til 2 years ago. I have been hospitalised. I have had days and days off work. I have had so much pain that I have been told I will be prepared for child birth when that day comes! I have had humiliating experiences. I have lost weight when I didn’t need to. I have been undernourished to the point of becoming weak and faint. I have developed an autoimmune condition and brain fog which may be attributed to the intolerances. I have experimented and learnt which foods I react to, which foods that I can tolerate in certain amounts, and which foods that I can eat freely. I feel the disappointment when I want to go to a lovely restaurant, but can’t eat a thing on the menu, and the frustration when it means friends and family feel pressured by where we can eat. I deal with the awkwardness of the situation when at friends’ or family’s houses and they struggle to come up with something for me to eat.
(This describes me perfectly, except that I do eat meat!)
That said, after two years, I have come to know what I can eat, and how to jazz those foods up, and I now eat well presented, delicious and healthy meals. I know a few places where I can dine, and try to enjoy the ability to eat out, even if it is in the same restaurants each time. I keep to my diet as well as I can, and I get bad symptoms once or twice a month at the most, as opposed to every day, which I had done prior to my diagnosis. I do get nauseous fairly often still, but as far as I know, that is more connected to my autoimmune condition, and the medication I take.
I have been in so much pain when reacting to foods that I have been doubled over in the street, not able to move. I have paced up and down my room, rolled around the bed, shuffled up and down the couch, stood up, bent down, stood up, bent down, desperately trying to find that desirable but unattainable comfortable position. I’ve laid crumpled on the shower floor, when the pain has come on unexpectedly and suddenly mid shower. I have missed social events. I have become fearful of certain foods, and eating meals prepared by others.
When I am in this type of pain, I am hesitant to use pain killers, in case it is going to hide something I should know about. If the pain keeps me awake or I am at work, I will sometimes use paracetamol or codeine though, which can slightly take the edge off. As a patient in the hospital, a good dose of oxycodone or morphine has always helped!
There are tablets that can help stomach cramps and upset (like someone used to say to me, gravy thickeners!!), but ironically, most of them are not fructose friendly. I do not like to use these anyway, as you might end one problem by using them, but you can begin another!
I try to use more natural, soothing options when I can. I find tea can help for milder pain. The warmth can soothe it, and it also helps with nausea (though I find if I am too nauseous, swallowing anything makes it worse, so I have to wait for an opportune moment between the waves!). I find the best teas to use are the ones with ginger, or mint in them, or chamomile, white or green teas. Try to only use decaffeinated teas, as drinking a stimulant is just adding another element to your situation that you don’t need. Also fruity or spicy teas are best avoided at this time.
Placing some warmth on your stomach and back can help too; it will at least distract you from some of the discomfort. Sometimes I can tolerate this, sometimes I can not. When my symptoms were frequent and ongoing, I could not stand anything touching my stomach. Even when I was not in actual pain, my abdomen was so sensitive that just a well meaning, gentle hug would be unpleasant. I remember being in a crowd once, and a stranger poked me in my side because he wanted me to move; I nearly collapsed on the ground! Friends and loved ones seem to like to squeeze the sides of my abdomen (clearly meant as a loving, playful gesture) and then they wonder why I jump a mile and growl and glare at them!! So if you’re like me on this one, maybe try a warm bath!
Distraction is also a good remedy. It is not always going to be effective, but sometimes a movie or an audiobook can give you something else to think about. Hugs are great too! Try to sleep if you can.
When people around you get anxious or irritable with you, or are unsure of how to help, it makes an already horrible situation very difficult. When you are in so much pain that you are lying on the bathroom floor sobbing, you are probably not in a condition to explain to someone what is going on, or what you need! I hate when people get seemingly annoyed at you, as if your pain, nausea and subsequent thrashing, moaning and pacing is a major inconvenience or embarrassment to them; as if you’re just doing this for effect and drama! I also hate being asked what I thought caused this episode! When you feel that unwell, the last thing you want to do is think about the food that caused it! I am learning that it is wishful thinking to assume that all people will be compassionate and understanding in this situation. I do have to remember though, that some people are just unsure of how to react, and that maybe, coming from a health care background, I unfairly expect them to understand the situation better. Possibly the best way to avoid this, is to make sure the people around you are aware of what your symptoms can be, and what are the remedies are that can help you.
When I’ve had a bad episode, I find it can take days to get back to normal. Make sure you keep up your water intake. I also drink Lucozade. This is made with glucose, so is perfect for people with fructose malabsorption. I find that I usually can only comfortably drink one glass of it in a sitting, but that is enough (it is also a great addition when you want something sweet on your good days). Glucose helps people with fructose malabsorption absorb fructose, so drinking Lucozade, or eating glucose tablets (both found in most chemists or supermarkets) can help when eating some fructose containing foods. It can also give you some energy when you’re weak from minimal food intake.
Eat when you can – simple, plain foods are best. Try rice crackers and Vegemite, plain hot potato chips, soup, plain pasta, or plain chicken. Introduce fibre when you can to get back on track. I find blueberries are surprisingly good for this!
Of course, ultimately prevention is better than cure. Try your best to be aware of what is causing the reaction. This is much easier said than done. I went years with progressively worsening symptoms, and always brushed aside the idea that food was the cause. That might seem ridiculous, and like I was in severe denial! However, it is quite feasible. My symptoms began showing themselves at 4am on an occasional morning here and there; hours after I had eaten. Why would I think that it was caused by food? It took years to get to a stage where I was reacting badly most days, and even at that stage, when doctors asked if it could be food, I’d say no, because I reacted in different ways and frequently. I now know that that was because I am intolerant to so many foods, and everything was setting me off. I also find it very frustrating to know that so many doctors just accepted my belief that it wasn’t food, and it took years before one doctor suggested fructose malabsorption. And even then, I had to request to have a breath test done, after months of struggling through restrictive elimination tests. So make sure you read up and know your options. I also kept a food journal for 1.5 years. It was painful and monotonous, but it can help to show you what is the regular trend.
You also have to put on your big girl or boy pants and experiment! When you’re intolerant to as many foods as I am, it pays to try out foods so that you can find as many as you can to eat; to nourish yourself with. This can be so scary when you are aware of what you could be inflicting on yourself. I go a long time between trials sometimes, but I know that the more I do, the more foods I can potentially open myself up to, and the more nutrients I can eat.
I have recently found a book which is quite useful. It is called ‘The Virgin Diet”, by J.J. Virgin (odd book name, I know!). It is targeted at weight loss, which is not currently an interest to me, but it is based on food intolerances. It looks at the main foods that are behind food intolerances, and gives explanations on why the foods can cause reactions in your body, why they can be harmful (even to people without intolerances or allergies), what damage they can do, and how to avoid and substitute them. I have found this motivating and inspiring, giving me a new understanding of why I should avoid these foods; not just because it means I am symptom free, but also for better general health and well being.
The best remedy of all? Keep positive! It can hurt like billy-o, it can make you weak for days, it can turn you into a hermit; but don’t let it make you into someone you are not! (the theory is all well and good; it is harder to put into practise!) Keep your chin up, and you will find food that your taste buds AND your body will enjoy!