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Struggles with CF-related diabetes
Recently, I’ve been struggling to manage my CF-related diabetes. My glucose spikes and a few hours later, my glucose will drop. Of course, speaking to my endocrinologist helps, but I want to ask my fellow people with CF:
How do you manage your glucose? How do you manage to keep it from fluctuating so often? -
12 Replies
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I don’t have diabetes myself, but have been helping family members to manage their diabetes for quite some time. I find it helpful for them to track their blood sugars to see if there are any patterns or trends during certain times of the day. With this information, they are able to make any adjustments necessary (after consulting with their endocrinologist). Also, sticking to a high-protein, diabetes-friendly diet is of course very helpful!
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High proteins and low sugars are the best! I’m sure you do a great job helping loved ones manage their glucose.
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I would look into dr berry and dr chaffee. We keep our son on a keto/carnivore diet. It keeps blood sugars from spiking up and down..and can actually be very healing. My son that is 3, his pancreas is starting to work again and almost within normal range.
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Where do these doctor’s practice?
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I still produce some insulin so I don’t have to inject any, but I have to manage my diet pretty well to keep the glucose spikes from happening. I usually eat a high protein diet and have low carb veggies like broccoli and cauliflower. Fortunately, I really like them. Also, cheese. I make a version of bread in a ramekin in the microwave using almond flour or pecan flour and I top it with peanut butter or almond butter. Recently I tested a breakfast cereal called Magic Spoon which comes in a variety of flavors, and it did not raise my blood sugar. I was very surprised at this even though I had viewed several videos of people testing it for themselves and having the same result. I use almond milk on it and occasionally add some heavy whipping cream. Yummy. If I find my blood sugar going high because I wasn’t diligent enough with fork and spoon some moderate exercise in the form of walking or light calisthenics will help bring it down. Try to get adequate sleep as that also helps with glucose control. As an elder, I have a little bourbon before supper, and I can attest that my glucose definitely goes down as a result. This will happen with a distilled spirit or with a dry red wine. Moderation is recommended, but it works for me. Always remember, challenges and setbacks are going to happen and there is no way around that, so be prepared don’t give up.
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While I wish I could join you on the bourbon Rusty, I will look into the cereal you named. Sounds delicious!
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I also still produce insulin, but with CFRD it’s to slow in coming to stop the postprandial high, so I just treat this with insulin. If I go too high my own insulin may drop it low anyway. I found that if I feel or know it’s dropping at the hour mark (with rapid acting given just prior to eating), to have a small snack ready. Like 2.5 carbs, which normally just tops it up enough to avoid a low. This is better for me than going high for an hour with every meal, getting a headache and losing weight.
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That’s some great advice, Bubbles. I’ll definitely keep a snack on hand in case I feel like I’m getting low after an hour. Thank you!
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Hope it helps William, also got the carb amount wrong, its more like 10 to 15grams carbohydrate, as my blood sugars go up by 18mg/dl, per 10g carbs, so it works well to stop lows ( I think I’m saying this right, I still get confused about how to carb talk).
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This seems common with CFRD (probably CFRD is called Type 3C by some). My wife’s blood sugar (BG) swings widely sometimes even when she has eaten nothing. Usually dips overnight and may be blow 3mmol/L about 3-6am. At times has been difficult to get up. We have found adding glucose to an electrolyte drink seems to work best. It seems abnormal intracellular electrolytes plays a significant part in CFRD. Where? Does it play a part in the production of Insulin in the Islet cells or in the activation of that Insulin? It seems people on Trikafta have better control of their BG. Do they? Comments please?
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Hi Tim,
I can’t speak for all people with CFRD on Trikafta but good glucose control still depends on my efforts. A small amount of simple carbohydrate will send my glucose rocketing with an inevitable crash. There is no gently rising and falling curve on my cgm but something more like a steep rise and dramatic fall. I can usually just ride the low out and let it resolve on its own, but I have occasionally taken something to help my glucose rise quicker. The problem I have with that is that it is easy to overcompensate on the carbs, especially if I do it with a food source. It seems that when your glucose is low it is too easy to just keep shoving more delicious carbs into your mouth in an effort to pull out of the bad feeling from the low.
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The CSIRO, Australia’s government owned and funded research organization, has developed a diet that is recommended for Diabetes and obesity – indeed most persons. It is published in a number of their books, one of which I have attached.
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