Coping with Galactosemia as an Adult

Coping with galactosemia as an adult has been mind-blowing. I have had it all my life and I found out a little over a year ago. What is Galactosemia you ask? Well, it is a metabolic disorder whereby your body cannot handle galactose and it becomes a toxin in your body. Fun, right?

Coping With Galactosemia

I found out I had galactosemia by accident. Although I knew I was lactose intolerant for several years, I understood there was something else causing problems in my diet. It was not simple to figure out.

My mother got very sick two years ago and we were trying to get her Boost protein drinks to help her get some nutrients into her. She hated the Boost. Oh yes, and she is absolutely in good health now.

However, at the time, we had a box of each flavor of Boost. I started to drink the Boost so it would not go to waste. It caused absolute and clear problems with my digestion. My wonder daughter wrote to the company to understand what I could be reacting to. They wrote back. They let her know that they did a great deal of research to select a milk product that would not be a problem for 95+ percent of their customers.

The manufacturers told my daughter: “If your mother is reacting to our Boost product she has a very rare metabolic disorder called Galactosemia”. Can I tell you that suddenly my life made sense.

Galactosemia can be Devastating

First of all, I am a highly functioning, highly lucky Galactosemic. It has absolutely impacted my body and my life in very real ways, but I feel very fortunate in how it plays out in my body. It can cause severe mental and physical impairments and while I have a few, and they are rough, My intellect was not as adversely affected as most are.

As a child, I would have some odd reactions to food. Tomato Sauce, Milk, Cheese, Pasta. Everything had a tendency to upset my stomach. I learned pretty quickly that chicken and most vegetables were my friend. I loved eggs. But all those foods that made me feel unwell, well, I just tried to get by. I had no idea I was already coping with galactosemia just through avoidance.

Tomatoes invariably created sores inside my mouth. Blisters that would swell on my inner lips until I popped them to decrease the pain. We ate tomato sauce at lease 4 times a week. My poor mother had no idea what was going on with her child.

By twenty, I had pretty regular ataxia issues. When I was tired, my arms, my hands would twitch and it was impossible to control. By thirty I had whole sections of my arms and legs with no feeling at the surface. I referred to them as dead spots on my body where the nerves had somehow been destroyed.

Life as a Galactosemic

My brother says he could not live with the issues I have. I tell him, the deprivation is so worth my body finally feeling better.  The  tomatoes are very hard and  I really miss the tomatoes.  That is easy to admit to.

My first foray into understanding Galactosemia was wild and paralyzing. I felt like everything was unsafe. Galactose is a simple sugar that is found in many things. Fruits, vegetables and dairy all have different levels of Galactose. It was wild. Then I found there was an actual Galactosemia Council which helped a great deal with understanding how to deal with this.

All Hail the Council!

I’m really pleased there is a Galactosemia Council and I truly love the work they do. Galactose is in many many foods. It is naturally occurring and hard to avoid. Their guidelines are kind of cool. To cut out galactose is actually pretty difficult and very nutritionally limiting. They found that limiting everything with galactose leads to malnutrition. So, they say, be careful in what you choose.

In other words, the foods that are lower in Galactose are on the diet. Chick peas, tomatoes and dairy our pretty rough on my body and cause havoc, so those are just off my diet. No more Caprese salad for me.

So, the council recommends variety for nutrition and to cut out the rough stuff. I can live with that. I still get my avocado because the sugars are quite low. Lactose laden cheese are out. Never again. My love affair with cheese has to be over. It just isn’t safe.

Summing up The Coping Process

Can I sum up my understanding of life without Galactose? Learn to love vegan ice cream (there are a few insanely good brands out there – I promise). Let go of Tomatoes and mostly for me, I need to understand that food that hurts me, cannot ever be my friend.

Why do I work so hard to cope with galactosemia? What does this adherence get me? Well, I almost never wake up in the morning from pain in the cartiledge in my ears. The dead spots on my body (with supplements) are coming back online. The constant heat my body generates is diminishing. The burning pain in my joints that is unlike arthritis or just basic joint pain is not present as much as it has been in the last 15 years.

The damage to my eyes and organs, well, I will do my best, but they might be too advanced to fully recover, or just partially recover. As I said, I am very high functioning. And for that, I am very, very, very grateful.

Important Resources:
Wikipedia Article on Galactosemia
Galactosemia Disease Overview (hit Show More Information for full article)
An Introduction to the Galactosemia Diet

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