M.E.G.'s Confessional

My Mystery Disease is Pompe

The “D” Word

on May 1, 2010
It seems like everyone has had a doctor at one time or another who has told them to go on a diet. Either to loose weight, control cholesterol, help their anemia, there are even diets that allegedly help with conditions like Autism. Does what we put in our bodies really have that big of an impact on our overall health let alone individual health concerns or diseases? With Pompe Disease I would have to say emphatically yes it does have an impact. Because Pompe Disease patients lack the enzyme to break down glycogen, it just makes sense to consume less food that your body will store as glycogen. 

Bye-bye bread. But what will I put my peanut butter on?

That means a high protein low carb diet for me. Proteins are not stored as glycogen and carbohydrates and sugars are. So it is hello bacon and eggs for breakfast (maybe even green eggs and ham) and good-bye yummy nummy pastries and even cereal. Eating at home is fairly easy as I can control everything and look at the carb counts. Steaks or burgers (no buns) from the grill, cheese, salad with full fat dressing. When something is low fat they add sugar to improve the taste, so when it comes to salad dressing and dairy products I can’t consume low fat options. This is where it gets tricky when eating out – there are so many hidden sugars in sauces and dressings. For example – Not that I can eat pasta anymore, but there is usually a lot of sugar in marinara sauce.
 
Luckily, however, I live in a “tourist” area where guest service is practically an art form. If I know I’m going to eat out and I’m not sure about the ingredients in the menu offerings I can contact the Chef who is usually more than happy to accommodate me. Often it is almost like a challenge they are excited to take on. I guess preparing entrees with a low carb and sugar count for a Pompe patient could break up the monotony of a regular day. A Pastry Chef at the Ritz Carlton seemed rather eager to “experiment” with a crème brulee using a sugar substitute for the glaze. And of course the wonderful team at Walt Disney World is more that willing to take on the challenge – with mouse ears on! I was lucky enough to get in contact with an Executive Chef who was familiar with Pompe so he was immensely helpful and supportive.

When 5 star chefs are not available I can usually play it safe by ordering a burger without the bun or some other protein based entrée without the “starchy” side like potatoes or rice. Often they will let me substitute a small salad in place of fries or rice. Salads are also pretty safe as long as the dressing is not diet.

Where this new diet falls short is in the dessert area. Sad. What is life without

Add some cream and I'm all set! Yum!

 desserts? That is where I get creative. Sugar free desserts are not enough as those are usually still high in carbs. Breyers does make a low carb vanilla ice cream which has helped fight off those ice cream cravings. But berries or peaches with cream makes an even better low carb alternative to ice cream. And I love it!

Packing snacks or a lunch that is low carb can be somewhat of a challenge too. A cheeseburger without a bun is not only difficult to pack, but it usually doesn’t keep warm too well. When I go for my infusions I usually take some of the following along with me:

  • Cottage cheese
  • Tuna or chicken salad
  • String cheese
  • Almonds
  • Ham rolled with cream cheese
  • Atkins bars
  • Carrots and dip
  • Grapes
  • Olives
It is not exactly a “meal” but it is enough to get me through a day spent in the infusion chair. There is a Subway in the hospital lobby where I can order a salad, but really it is not that different, as far as variety, than what I can pack and take with me from home.

I never drink soda or coffee drinks anyway, so beverages are not really an issue. Most of the time, even before my diagnosis and corresponding diet, you can find me drinking water. Occasionally I’ll “get crazy” and drink tea.

A lot of people have asked if it was hard giving up things like bread and potatoes and the answer is: no. I mean, sometimes I’ll see something that is on the “bad’ list that looks good, but that is only momentary. I know that putting these things in my body is bad for me. I have taken it a step further and actually reprogrammed myself into thinking that carb and sugar loaded items will kill me. It is really as simple as that. So when I think of rice or cookies as “poison” then, no, it is not hard to pass them up. It is all mind over matter.

Giving up carbs and sugars is a small price to pay for, well…living.

 

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One response to “The “D” Word

  1. [...] have to think about everything I eat – I wrote more about this in an earlier blog entry. Because I am on a high protein, low carb, low sugar diet I can’t just grab whatever is [...]

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