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Personal Stories

I was diagnosed with a liver Glycogen Storage Disease (in my case it is GSD1a) as a young child. More recently I have struggled to control my blood results for triglycerides and cholesterol.

In January my family and I went to Florida for a winter break. Whilst we were out there we went to see Dr. David Weinstein who comes over to the AGSD-UK conference every year. I told him about the fact that my triglycerides and cholesterol were very high and asked him if he knew of a way to rectify/normalise them. He said that it was simple; a change of diet was needed.

With my mum and dad on a cycling event.

A change of lifestyle

This meant that I had to cut out dairy products (lactose), fruit sugars (fructose) and cut down on carbohydrates. He told me that it would, along with a fair amount of exercise, shrink the size of my liver and slowly bring my triglycerides and other markers in my blood back into normal range.

Over the course of this year all members of my family have changed our diets. And I increased my level of exercise by starting to train for the GSD Giant cycling event and playing more hockey.

Results back in the normal range

Upon receiving my next blood results, only two months after having started the diet, they showed that both my triglycerides and my cholesterol were reduced significantly from my last blood test. This meant that my bloods were back into the normal range for someone with GSD.

My bloods weren’t the only thing the diet helped change; it helped me lose weight more easily than before. I haven’t had any problems with the diet so far as it is easy to source lactose free dairy products. Also I take vitamin supplements to help my body cope with not having any fruit.

The restrictions worked for me

Here in the UK there are no dietary restrictions at present, however this diet has shown that for me the American dietary restrictions work. I personally would suggest this diet to any GSD1a patient who is looking to bring their bloods back into control, or to lose weight. Before starting any new diet it is a good idea to first check with both your dietician and consultant.