An honest account of living with undiagnosed food problems

I’m going to be completely honest, because quite frankly I have far overstretched my wits end here when it comes to eating.

Yet again I am sat at home on a Saturday night ill, and before you wonder if it is self- inflicted due to too much alcohol, I wish it was because then I could control it. No, I am ill yet again due to food.

At the age of 11 and 12, I had two operations. They were relatively minor operations and I should have been back to full health within a matter of weeks, but unfortunately the first one did not quite go to plan and I had to be operated on a second time. I am now nearly 23 and have suffered with my health since, the most ongoing problem being the awful reaction I get to a range of food.

The first time I had a bad reaction was when I was still recovering from my second operation. I had been out for a cream tea at a café where I ate a sandwich and a scone with jam and cream to which I got home and had the most excruciating stomach pains, I lay on my bed crying and barely able to breathe for all the pain – I have experienced this same reaction many times since.

Upon telling the doctor of my reaction to wheat, his advice was to cut wheat out of my diet without so much as doing a simple set of blood tests. I have now obviously discovered since that that is the worst advice a doctor should give as gluten should never be removed from a diet until a person has been tested for coeliac disease. Having been wheat and gluten free for years now, I could never even comprehend putting gluten back into my diet without being extremely ill.

Doctors have been my worst enemy with my ongoing food problems, I have been told there is no such thing as food intolerances and that it is just in the mind, I have also been accused of having eating disorders, with doctors often asking me ‘do you make yourself sick after eating,’ I can tell you I have never done that. I absolutely love food and hate the fact that so much food is off limits to me, quite frankly maybe if I did have bulimia, doctors might help me and I could find a way to cure myself.

Over the years, my reactions to food have got worse and worse. I have developed a massive intolerance to cow’s milk, even the smallest drop gives me awful stomach pains and I find that too much dairy makes me feel sick. A small shot of Guinness which I now can’t touch, once gave me stomach pains, sickness and breathlessness within a couple of minutes. Sugar is also my biggest enemy, even natural sugars from fruit gives me awful pains and bloatedness and I have to limit my fruit intake to just two pieces a day.

Tonight I am unwell even though I gave waiters strict orders in the pub on what I could eat. I had mackerel with green salad and lamb with roasted vegetables, completely dry with no sauces or ‘evil food’ on the plate. I also had a glass of wine, but obviously something didn’t digest very well and I came home and was ill – what was wrong with the food or wine I had I have no idea.

My nights out always seem to get ruined with me going home ill, instead of looking forward to going out to eat or drink, I now dread it because I wonder what I am going to have. It is taking over my life and I just can’t take it anymore, I really need some help and a proper diagnosis by someone who actually listens and takes me seriously. I just need some help finding out how to live with such a restricting diet and the best way to live with whatever it is that I have.

In the last week, I have finally made a bit of a breakthrough after seeing a specialist who specialises in coeliac disease. He is referring me to a dietician and I am to go back in a couple of months for tests to try and find out what is wrong with me. It sounds weird, but the best Christmas present I could get this year would be a diagnosis so that I can begin getting better. To think it has taken me 10 years to convince a doctor to send me to a specialist, which I am now paying for as I was so desperate to get sorted, is beyond a joke. I know there are many people in exactly the same position as myself and it is reassuring to know that I am not the only one going through this. I can only hope that in the future, doctors will be less dismissive of people complaining of food problems and will try and help instead of turning us away.

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