The Long Road Home...
My Journey through CSID began around the age of six months; this was when I was first being taken off breast milk to formula and cows’ milk. With children, particularly fussy children, most mothers will add a dash of sugar to the bottle so as the child will drink the milk. This is when things headed down hill for me.... I didn't gain weight, I was unable to produce a solid bowel movement and I was a very sick little girl. My mother kept pushing the hospital for a diagnosis, they had no idea what was going on. It wasn't until after a barrage of tests, did they finally do a biopsy and discover my intolerance to sucrose. The doctors had said that this was only a childhood illness, and that I would grow out of it. Due to this statement, every so often I would try something sweet, sometimes I would react sometimes I wouldn't. I built up a tolerance as a result, and by the age of 13 I was scoffing down the donuts, cakes and lollies with the best of them.
This was the beginning of the end for me. I became addicted to sweets. It wasn't long before I couldn't go a day without something sweet, and the sweeter the better. I gained weight progressively over the years, just a bit more each year, just enough that I never really worried so much about it. Until I hit my 20's, it was then I realized what I had been doing to myself, I had reached a whooping 104kg, which is massive when you are only 5"3'.
Having realized what I had become, I started to take a good hard long look at myself.... My skin was pasty and sickly white, I had big black circles under my eyes despite getting plenty of rest, I had forgotten what it was like to have normal bowel movements, and had resigned myself to the idea of "that’s just the way I am". My energy levels were also greatly affected; I would need to rest after one flight of stairs, which for a 20 something year old is pathetic. Then I remembered something my mother had told me several times growing up.... Something about sugar being worse for me then other people. I asked her about it, she said I was diagnosed with sucrose intolerance as a baby, but they said I would grow out of it. When they did the biopsy I was found to be missing the enzyme that breaks down sucrose.
After that I decided to take matters into my own hands, and do my own research. I found that in the early 80's my condition was commonly referred to as sucrose intolerance, but is now known as Congenital Sucrase Isomaltase Deficiency. There are many mutations of the condition, and people with CSID will not necessarily share the exact same symptoms or levels of intolerance. Another interesting fact was that there are very few medical professionals aware of the condition itself. This makes it incredibly hard to get up to date information, as research is not a priority for this particular condition.
Having been armed with this knowledge I set about trying to change my ways. I knew it was going to be a hard long road, but I was prepared to stick it out til I got there. I started experimenting with recipes, I knew I had to give up the sugar, but surely I didn't have to give up sweets all together. This was probably my biggest mistake... My recipes failed in the beginning, I would make a cake with artificial sweeteners, and then ice them with icing sugar because they tasted like cardboard. 3 years I carried on like this, trialling recipes, failing, falling off the bandwagon and heading back to sugar. A few years later some new symptoms presented themselves.... I started getting migraines whenever I ate sugar, and blood started presenting itself in stool samples. Things were not going well at all, I went to see a doctor about it, however, they knew even less then I did. We worked out that it was irritation within the intestinal tract, causing the bleeding. I needed to stop the sugar immediately before things became deadly. If I continued on the path I was on, not only was I looking down the barrel of bowel cancer, but also possible total organ failure.
Finally, this was enough to jump start me on the right track. I quit sweet treats completely, it was incredibly difficult. I used to be a smoker as well, giving up the sugar was a thousand times worse than giving up smoking cold turkey. It took me about a month for the cravings to get to a manageable level. Where I could go to a party or function, see the cake and keep walking. After 4 months I started introducing sugar free alternatives, like sugar free chocolate and jelly. Having not had sugar for so long, they tasted awesome. I soon learnt that the warning on the chocolate label should not be taken lightly though.... best to stick to a maximum of 2 rows per day, preferably 1 row. (Trust me on this one.... pew wee >.<)
Now that I am living a total sugar free life, I couldn't feel better. I have lost 30kg, my skin is bright and healthy again, the dark circles only appear now after a few big nights out ;) And I also now know how wonderful it is to have normal bowel movements without any nasty extras and putrid smells. I will on the odd occasion have a little something with sugar, IE if I go out for dinner and it is unavoidable. I find that I will react within a couple hours after the meal, to combat this though I learnt to both eat something before and only order something small at the venue to be polite, or wait until afterward and grab something on the way home that is sugar free. Everybody knows about my intolerance now, and try to accommodate when planning events, which makes life a lot easier.
Now the journey begins to try grow my recipe database, and educate the medical practitioners as much as I can about this condition. I feel this is still just the beginning of a very long and hopefully rewarding journey.
This was the beginning of the end for me. I became addicted to sweets. It wasn't long before I couldn't go a day without something sweet, and the sweeter the better. I gained weight progressively over the years, just a bit more each year, just enough that I never really worried so much about it. Until I hit my 20's, it was then I realized what I had been doing to myself, I had reached a whooping 104kg, which is massive when you are only 5"3'.
Having realized what I had become, I started to take a good hard long look at myself.... My skin was pasty and sickly white, I had big black circles under my eyes despite getting plenty of rest, I had forgotten what it was like to have normal bowel movements, and had resigned myself to the idea of "that’s just the way I am". My energy levels were also greatly affected; I would need to rest after one flight of stairs, which for a 20 something year old is pathetic. Then I remembered something my mother had told me several times growing up.... Something about sugar being worse for me then other people. I asked her about it, she said I was diagnosed with sucrose intolerance as a baby, but they said I would grow out of it. When they did the biopsy I was found to be missing the enzyme that breaks down sucrose.
After that I decided to take matters into my own hands, and do my own research. I found that in the early 80's my condition was commonly referred to as sucrose intolerance, but is now known as Congenital Sucrase Isomaltase Deficiency. There are many mutations of the condition, and people with CSID will not necessarily share the exact same symptoms or levels of intolerance. Another interesting fact was that there are very few medical professionals aware of the condition itself. This makes it incredibly hard to get up to date information, as research is not a priority for this particular condition.
Having been armed with this knowledge I set about trying to change my ways. I knew it was going to be a hard long road, but I was prepared to stick it out til I got there. I started experimenting with recipes, I knew I had to give up the sugar, but surely I didn't have to give up sweets all together. This was probably my biggest mistake... My recipes failed in the beginning, I would make a cake with artificial sweeteners, and then ice them with icing sugar because they tasted like cardboard. 3 years I carried on like this, trialling recipes, failing, falling off the bandwagon and heading back to sugar. A few years later some new symptoms presented themselves.... I started getting migraines whenever I ate sugar, and blood started presenting itself in stool samples. Things were not going well at all, I went to see a doctor about it, however, they knew even less then I did. We worked out that it was irritation within the intestinal tract, causing the bleeding. I needed to stop the sugar immediately before things became deadly. If I continued on the path I was on, not only was I looking down the barrel of bowel cancer, but also possible total organ failure.
Finally, this was enough to jump start me on the right track. I quit sweet treats completely, it was incredibly difficult. I used to be a smoker as well, giving up the sugar was a thousand times worse than giving up smoking cold turkey. It took me about a month for the cravings to get to a manageable level. Where I could go to a party or function, see the cake and keep walking. After 4 months I started introducing sugar free alternatives, like sugar free chocolate and jelly. Having not had sugar for so long, they tasted awesome. I soon learnt that the warning on the chocolate label should not be taken lightly though.... best to stick to a maximum of 2 rows per day, preferably 1 row. (Trust me on this one.... pew wee >.<)
Now that I am living a total sugar free life, I couldn't feel better. I have lost 30kg, my skin is bright and healthy again, the dark circles only appear now after a few big nights out ;) And I also now know how wonderful it is to have normal bowel movements without any nasty extras and putrid smells. I will on the odd occasion have a little something with sugar, IE if I go out for dinner and it is unavoidable. I find that I will react within a couple hours after the meal, to combat this though I learnt to both eat something before and only order something small at the venue to be polite, or wait until afterward and grab something on the way home that is sugar free. Everybody knows about my intolerance now, and try to accommodate when planning events, which makes life a lot easier.
Now the journey begins to try grow my recipe database, and educate the medical practitioners as much as I can about this condition. I feel this is still just the beginning of a very long and hopefully rewarding journey.
