restrictions with CFRD

[ladybug]

Hello.

I've been noticing when I've posted about regular vs. diet soda, scandishakes (YUCK!), etc... that many people on here avoid things high in sugar cause they have CFRD. Now, I understand why you'd do that if you're NOT on insuling, but its my understanding that CFRD is different in that doctors still want us to have whatever we want to eat/drink as long as we compensate with insulin to cover the spike. Am I wrong? There are a lot of people on here who say they limit their carbs cause of CFRD. I've always been told NOT to do this cause with CF you need the carbs to keep weight on. So, I'm just a bit confused. I find myself lowering my carb intake on occasion, and almost instantly I loose lbs. I don't know why they would tell a CFRDer to do low carb dieting (unless you're not controlling it with insulin maybe).

Thanks,

 

[PLUCKY]

Sonia,

I understand where you are coming from. I am new to CFRD I was diagnosed about 2 years ago. The first doctor I went to me and him disagreed completely. He was a diabetic doctor and I believe he didn't have a well enough understanding of CFRD. He had me on pills, YES THAT IS RIGHT PILLS, to lower my sugar and had me lower my carb intake. I know go to someone very familiar with CFRD and he told me the same thing. Offset with insulin. I need the carb in drinks and what not. I think some people lower their carbs to be safe and some do to avoid more shots. I admit sometimes I drink diet when I am thirsty and don't want to give myself a shot. My doctor has told me the same thing as yours as have many studies I have read about.

 

[TemptressOfTheSea]

I've had CFRD for 12 years now and since the get-go, I've always been on insulin and have been told NOT to limit my carb intake, but to just make sure I'm getting enough insulin.

A few years ago I started seeing a new endocrinologist who has a lot of experience with CF'ers and diabetes. He suggested that because I was taking so much insulin, and that it was good for me to eat as much of whatever I wanted, I get an insulin pump so that I'm not giving myself a million shots a day. It has worked out great, and although my HBA1C is a little high, it's the best it has been since my diagnosis.

Honestly though, I don't drink sugary sodas or a lot of juice because I'd rather EAT something sugary instead, ideally something that has more fat, protien, etc (like a nice big Snickers bar or a hunk of carrot cake)!

It's interesting to hear how everyone handles their CFRD...

 

[PLUCKY]

Haley which pump do you have? I am currently looking to get one because the shots are starting to hurt.

 

[ladybug]

I'm curious if anyone knows how CFRD manifests itself if not treated? For example, I've often wondered if we would possibly end up on dialysis or with numb fingers and toes or other "normal" characteristics of long-term untreated "regular" diabetes? I suppose no one has lived with it long enough to develop such complications, but aside from the occasional high spikes, I wonder if since our pancrease works SOME it would be the same outcome as "old folk". Hmmm....

 

[PLUCKY]

YEs Yes and YEs untreated CFRD can be very dangerous to your health as a whole

 

[TemptressOfTheSea]

Plucky,

I have a Minimed Paridigm 508 model. It is amazing...with the amount of insulin I go through, I only have to replace the cannula like every 3-4 days...so only one needle stick those 4 days!! I would highly reccomend any pump...for me it had gotten my sugars under much better control.

 

[TCNJcystic]

If you don't mind my asking, what were your first symptoms of CFRD?

 

[Diane]

I've had diabetes for 26 years now and i do notice that my toes have slight numbing effects so yes uncontrolled diabetes can be a problem. I was on insulin for all but a year and a half of the 26 years i was diabetic. I started using oral medication but that turned out to be a problem. My blood sugars were consistantly high so i couldnt eat as much and lost a lot of weight, but back then i was really healthy so it never really affected me much. My doctor decided to put me back on insulin due to the inability to eat enough to gain weight, and i gained it back quickly. I used to live on soda when i was younger , but now I never drink sodas at all. Instead i drink wild cherry seltzer.... kind of fools my taste buds into thinking they are getting a dull soda . I am allergic to nutrasweet ( aspartame) so sugar free sodas ( and other products containing it) are out of the question. Diabetes with cf can be tricky.... a lot of things affect the blood sugars, illness, infection, exercise, menstrual cycle for women, certain foods.... this that and the other thing, so it is a balancing act thats hard to follow.

 

[Diane]

oopsie---- for Steve's question, my first signs of diabetes were extreme thirst, hunger, and tiredness. I also had blurred vision, and my toes and calves would cramp up often. I also had loss of weight even though i was eating like a horse.

 

[ladybug]

I had absolutely no symptoms, and still don't. The only way I knew it was CFRD was a Oral Glucose Tolerance Test (I actually took 2 to make sure) that my doc wanted before we tried to get pregnant.

I actually find myself hyperglycemic A LOT since I've been on insulin.... I never had that problem before being diagnosed. Hmmmm....

 

[catboogie]

sonia, i've always been told that it is bad for your body to eat a lot of sugar/carbs and then "chase" it with insulin. better to eat smart to begin with. i don't know for sure if this is the case for cfrd, but it does make sense. anyway, i don't worry about keeping weight on now, just about keeping my sugars in control.

 

[MANDI]

I AM 32 YRS. OLD AND WAS DIAGNOSED WITH CF AT AGE 9 AND CFRD IN 1997. I HAVE A WONDERFUL ENDOCRINOLOGIST WHO UNDERSTANDS THAT I HAVE TO HAVE CARBS. BECAUSE OF THE CF SO HE DOESN'T REALLY ASK ME TO LIMIT MY CARBS., JUST TO BE CAREFUL TO COVER THEM WITH ENOUGH INSULIN. BY THE WAY, I HAVE BEEN ON THE INSULIN PUMP FOR 5 YRS. AFTER GOING THROUGH THE PAIN OF GIVING MYSELF UP TO 7 SHOTS A DAY!!!!! I USE THE MINI-MED 508 PUMP AND IT HAS BEEN GREAT!! I AM NOW GETTING READY TO UP-GRADE TO THE PARADIGM AND I AM REALLY EXCITED ABOUT IT BECAUSE THE GLUCOSE MONITOR THAT COMES WITH IT AUTOMATICALLY TRANSMITS YOUR GLUCOSE READING TO THE PUMP AND ADJUSTS YOUR INSULIN ITSELF ACCORDING TO A HIGH OR LOW READING. THAT TAKES ALOT OF THE GUESSING AND FIGURING HOW MUCH OF A BOLUS YOU NEED IF YOUR GLUCOSE IS TOO HIGH. I ADMIT THAT I FIND MYSELF NOT EATING "EXACTLY" WHAT OR THE WAY I SHOULD AT TIMES BUT AS YOU ALL KNOW THAT BOTH THE CF AND DIABETES ALMOST WORK AGAINST EACH OTHER. PLUS THE STRESS!!! AT THE PRESENT TIME I AM AT A POINT WHERE I NEED TO 'LOSE' WEIGHT AND I'M FINDING THAT VERY DIFFICULT AS WELL. MY LUNG FUNCTION IS ONLY AT 46% NOW AND I AM ON OXYGEN AT NIGHT AND SUPPOSE TO WEAR IT ALL DAY TOO BUT I DO ONLY WHEN I FEEL LIKE MY O2 LEVEL IS LOW, SO EXERCISING IS REALLY HARD FOR ME, EVEN SIMPLE WALKING. ANY SUGGESTIONS FOR THIS PROBLEM WOULD BE GREATLY APPRECIATED!

 

[MANDI]

STEVE- MY FIRST SYMPTOMS WERE EXTREME WEIGHT LOSS, DRINKING ALOT OF LIQUIDS CONTINOUSLY THROUGHOUT THE DAY AND STILL FEELING THIRSTY AND MOOD SWINGS ALONG WITH THE BLURRY VISION & FATIGUE.