CF Related Diabetes


According to David M. Orenstein’s Cystic Fibrosis: A Guide for Patient and Family, about 20% of CF patients have developed CFRD by the age of thirty.

If you have CFRD you may have more trouble gaining weight than before you contracted it.
CFRD inhibits the pancreas from secreting enough insulin. Insulin helps your body use the energy (in sugar form) in your bloodstream after digestion. When your pancreas produces an insufficient amount, the sugar in the blood gets “backed up.” Your glucose reading is higher than 120. When it reaches 180 and above, Luckily your body naturally responds to high blood sugar by flushing the glucose into the bladder, where it leaves in the urine. These calories get wasted.
Once CFRD is diagnosed, we can take insulin to prevent the sugar in your blood from getting lost. That way, you will be able to get more of the calories you eat.

If you have recently discovered you have developed CFRD you may feel angry, sad, afraid, guilty, overwhelmed, or even relieved (for example, if you spent a long time searching for the cause of the symptoms you had). Take some time to process all of these feelings. Applaud yourself for all of the efforts you have made in the past to treat your CF, and know that you will be ready for the next challenge in your life, treating your CFRD.

METHODS THAT DO NOT WORK (I tried them all!)
The Whatever I Want Diet
After I was diagnosed with CFRD my specialist at the time encouraged me to continue eating the high-fat CF diet, a.k.a., the “Whatever I Want” Diet. He believed that I could “cover” the sugary soft drinks and the sweet and fattening desserts with insulin.
This method of managing my blood sugars did not prove effective, as my glucose levels would spike up and drop way down low even if I took insulin with these types of foods. When I cut out the sugar dramatically (except for on special occasions), I noticed much more balanced glucose readings.

The Low-Carb Diet
You may think that in order to control your blood sugars you can eat a diet with few carbs and mostly protein and fat. I found this method to be unsuccessful when I tried it. I hated taking insulin injections, and thought I could minimize taking them if I stopped eating carbohydrate foods like rice, pasta, pizza, bread, etc.
Instead, I ate hamburgers, steak, and Caesar salads. Soon I realized that my blood sugars were low a lot and I was losing weight! I learned in a nutrition book that everyone needs carbohydrates because every cell in your body uses them for energy. Carbs entirely power your brain!
People with CF, even when we take our enzymes, have a much tougher time digesting fats and proteins such as meat, eggs, dairy, and butter. If our diet consists of mostly these products, much less of what we eat will be digested. Carbs are much easier to digest for CF patients, so it makes sense that if we eat healthy amounts of carbs and cover it with insulin, we will be able to gain weight.

The Processed Grain Diet
As soon as my doctor told me that I needed to eat carbs to gain weight, I decided that I had better eat larger portions of carbs if I wanted to gain weight. So I began filling my plate with white rice, pasta, pizza, and bread. I did gain some weight, but even with insulin my blood sugars were still very high after meals. The carbs I was eating were processed “white” grains. Most wheat products nowadays are first stripped of their fiber and “enriched” with the lost nutrients. The lack of fiber, however, keeps our bodies from gaining long-term energy from them. It takes so little time to break the food down in our digestive systems, our blood sugars spike and then drop soon after.

I began seeing an endocrinologist after I switched to a doctor that specializes in adults with CF. Endocrinologists treat hormonal problems, including diabetes, which is the defective secretion of the hormone, insulin. I was glad I found a doctor that had experience treating other patients with CFRD. He taught me what I know about carbohydrates.

The Complex Carb Diet
According to my doctor, our bodies can only use so much insulin to cover the carbs before thirty minutes go by and it has left the system. For example, if I eat a frozen sausage biscuit with white flour for breakfast, and took a lot of insulin with it, my blood sugar may still go up to 250 at my post meal glucose check. Then, because the carbs did not have lasting energy that comes with fiber, my blood sugar will drop way low to 60 an hour later.
Because of CFRD, my body has an easier time dealing with “complex-carbs” than the more “starchy” carbs.
Some complex-carb foods to include in your regular diet:
• Whole wheat bread
• Brown rice
• Sweet potatoes
• Oatmeal
• Corn

Complex-carbs take longer to break down than simpler carbs. The longer it takes to break down, the less likely your blood sugars are going to “spike” up. Complex-carbs are the middle ground between pure sugar and fat. Your body breaks down sugar very fast, fats very slowly, and complex-carbs just right. Complex carbohydrates have more fiber and improve your digestion. Eating them will be more likely to stabilize your glucose, keep your energy at an even level, and keep you satisfied longer after your meal.
Keep in mind that complex carbs you eat do not have to consist of only rice, oatmeal, sweet potatoes, and brown rice pasta, as vegetables also contain them. Use this list as inspiration for what to include in your regular diet:

Spinach Whole Barley Grapefruit
Turnip Greens Buckwheat Apples
Lettuce Buckwheat bread Prunes
Water Cress Oat bran bread Apricots, Dried
Zucchini Oatmeal Pears
Asparagus Oat bran cereal Plums
Artichokes Muesli Strawberries
Okra Wild rice Oranges
Cabbage Brown rice Yams
Celery Multi-grain bread Carrots
Cucumbers Whole meal spelt bread Potatoes
Dill Pickles Pinto beans Soybeans
Radishes Split peas Lentils
Broccoli Navy beans Garbanzo beans
Brussels Sprouts Tomatoes Kidney beans
Eggplant Cauliflower Onions

Despite their sweet taste simple carbohydrates have many disadvantages for everyone, whether or not you have CF or CFRD. Simple carbs may alter one’s mood, lead to compulsive eating, and cause glucose “spikes.” In addition, a high consumption of sugar can lead to uncomfortable withdrawal symptoms when you finally decide to improve your diet and skip the sweets.
Because they take less time to break down, they quickly move to the blood stream, raising your glucose and giving you a “sugar high” and quickly exit through your bladder, leaving you feeling lethargic. Examples of foods containing simple carbs:

Table sugar, (High fructose) corn syrup
Candy, cake
Fruit juice
Bread, baked goods, and pasta made with white flour
Soft drinks, such as Coke®, Pepsi®, and Mountain Dew®
Most packaged cereals

If you have CF you may have noticed certain annoying double-edged swords:
• Antibiotics to treat lung infections may curb your appetite and give you diarrhea
• Eating fattening cow dairy products and wheat may make your body produce more mucus, irritating your throat and intestines

If you have CFRD you may have noticed certain obstacles that seem impossible to beat:
• Your favorite high-fat, sugary foods make glucose levels difficult to control
• A high-fat, high-protein, but low-carb diet will NOT put on weight
• More than three meals a day means 8 or more blood sugar “sticks” (which interrupt daily activities)

When I learned the previous information on carbohydrates I realized that I would no longer be able to regularly eat fattening foods that I had relied upon to gain weight before the CFRD diagnosis:
• Soft drinks and juice
• Milky Way chocolate bars
• Dessert cake

I had been told by my doctors to eat things with sugar because sugar adds calories. This change challenged me because for the first time in my life I had dietary restrictions. Most CF patients enjoy being able to eat whatever they want, and grow up hearing how lucky we are from people that struggle to maintain a healthy weight.
I have coped with the restrictions by treating myself occasionally to my favorite foods I should avoid, and by realizing that I deserve to eat primarily healthy foods.

Whenever a doctor tells me to “avoid” a certain food but does not totally restrict a food, I use the following system: When I buy my weekly groceries I do not buy any of the foods I should avoid.
I eat at home and make myself meals during the majority of the week; however, I reserve one or two days of the week to eat out. During this time I allow myself to eat my favorite foods in moderation (even if they are not on my meal plan).
This arrangement allows me not to feel deprived and full of self-pity. I feel that designating yourself a “Splurge Day” helps with the transition period in forming lifestyle changes. Completely denying yourself food that you enjoyed eating previously does not seem healthy to me. I do not, however, condone “binge” eating or drinking of unhealthy foods or beverages, as this self-destructive type of behavior does you no good.

A Complex-Carb Diet can be difficult to adjust to. Almost every food establishment you pass lacks the complex-carb foods that you need to maintain a healthy glucose level. Think about what carb food items most restaurants offer: French fries, pasta, pitas, white rice, hamburger and hotdog buns, and pizza.
Some Asian restaurants offer brown rice, but it can be hard to find a place that makes sweet potatoes. You may find places that serve whole-wheat pasta, buns, rolls, crackers, pizza, etc, but they are not ubiquitous.

Because gaining weight with CFRD requires eating carbs, you must cover them with insulin. Try to visualize the insulin as a positive tool that will help you gain weight. I know it may hurt, and it may bleed, but you probably cannot gain much weight anymore without insulin. I make sure that every meal I eat has carbs in it (if not complex-carbs), which means that I take insulin with every meal (unless my blood sugar was low and I needed something to bring it back up).

Before you had CFRD you probably could keep a bottle of enzymes in your purse or a pillbox in your pocket. Now that you have CFRD you must keep an assortment of medical tools with you as well as medications.

Diabetes Bag contents:
• Glucometer
• Lancing device
• Lancets in a drawstring pouch
• Test strips
• Insulin delivery device
• Insulin vials
• Enzyme bottle
• Pill box for other oral medications
• A handkerchief for wiping up blood
• My Glucose Chart
• Band-aids
• A small Low Glucose Sweet

People with CFRD inject ourselves with insulin nearly every time we eat. These injections bleed a lot for me, and in order to save my clothes from bloodstains I use band-aids. I buy the large ones that cover a lot of surface area and keep them on my injection sites, changing them each day. The kind I buy has antibiotic jelly on them for extra sanitation.
People with CFRD cannot go into a diabetic coma for high blood sugar, but they can for low blood sugar. You should prevent such an emergency by regularly monitoring your glucose (at the very minimum before meals), and carry an emergency “Low Glucose Sweet.” I keep a little box of raisins in my Diabetes Bag. They have lots of fructose, but are dried so they do not spoil quickly. My doctor prefers me to use dried fruit over chocolate bars, as chocolate bars require enzymes, and they have refined sugar rather than natural fructose. If your blood sugar drops to the point that you are weak, you need to get a hold of some fruit juice as soon as you can.

If you have CFRD you may be a little frustrated with the glucose booklets that your endocrinologist gives you. This is normal, because you have much more than blood sugars to be aware of. You may need to keep track of how many calories you take in, what kind of food you are eating, and how many times a day you are eating! My doctors want much more data than the booklets ask for. See the Glucose Chart in the section: Managing Paperwork.
If you make your own chart, you may want to make a table on Microsoft Word or another word processor. There are five rows and eight columns. Make a table for each day of the week and keep it all on one page. To help you know where to write your data, make sure that the borders of the table are turned on.
If you eat more often, add more meals. The "Time Before Meal" column refers to what my glucose reading was, and I follow up two hours later under "2 Hrs. Later."
The Insulin column is for the amount of insulin I took. I use Humolog, so I write, "10H" if I took ten units of Humolog, and "10L" if I took ten units of Lantus.
I use an insulin delivery device, and I have to keep track of how many injections I use so that I know when to change the cartridge. That is what the "Inj #" column is for.
Food at Meal shows my doctors what I am eating, and then I write the calories (I'm still learning how to calorie-count).
Good luck with your own chart. It will help you always have information for your doctors. Also, you will constantly be able to know why you are gaining or losing weight, by knowing whether your blood sugars are in control or that you are getting enough calories.

I can honestly contribute much of the success of my treatment of my CFRD to checking my glucose two hours after every meal. This helps me know if the food I just ate got absorbed (after being digested with my enzymes) or not, and also if I took the appropriate amount of insulin.

In order to remember to check my glucose two hours after each meal I set the alarm clock on my cell phone. Some watches have this alarm clock feature, and I highly recommend purchasing such a watch if you do not use a cell phone.

Because I check my glucose twice for every meal, I struggle with squeezing in snacks. Three meals a day can sometimes be difficult with my busy lifestyle, but when I prioritize them and keep track of the time going by each day, they make the cut. However, snacks require an extra glucose check, which means I end up having to eat something every two hours.
I have been able to eat one snack each day between lunch and dinner. I eat an Organic Food Bar (chocolate chip), which has no added sugar (only the sweetness from dates). They taste wonderful and cost about $2.00 at your local health food store or Vitamin Shop. You can carry them with you as a low glucose remedy as long as you have enzymes handy. They have 310 calories, 15 grams of fat, 12 grams of carbs, and 7 grams of fiber. Experiment with different food bars and portable snacks so you can get in the maximum number of calories.

The challenges presented with CFRD dietary restrictions have blessed me with better health. Because of my diabetes I eat more “100% Food.” I avoid processed foods, which spike my glucose, and I have learned through years of learning about nutrition that a proper diet excludes preservatives. See more in the section, Drug-Free Healing.

1 comment:

  1. Anonymous16.6.08

    Hi, my 12 year old daughter was diagnosed with CF related diabetes a few weeks ago and its a struggle, she is on insulin injections but her readings are still very high,
    thanks for all the info you have here, its really helped,
    Nikki mum to chloe aged 12 CF..CFRD