This CFRD thing....

[ladybug]

OK, so I'm really confused and frustrated... I know many on this site cut out or lower carb intake cause of CFRD (candy, cookies, etc.).... Well, I'm afraid if I do this, even if I substitute nuts, etc. that are high in protein and fat, I will loose weight fast. I mean, even whole milk has lots of sugar. But, you cut that out, you're cutting out carbs AND calcium! So, I'm wondering what ya'll do? Do you JUST limit candy and things with no nutritional value and empty carbs? Or, do you also limit things like ice cream and cookies and deserts that also contain needed fat along with the carbs? I'm pretty sure if I cut down my sweets, I would melt away the pounds, which I'm terrified of doing after I've worked so hard. I'd rather eat cookies and milk and take insulin to compensate. Isn't THIS how we're supposed to do it?!?!?

Thanks-

 

[falloutboygurl16]

Ok i had a different doctor than i have now but when i was first diagnosed with cfrd i almost cut my sweets and carbs down 80% because my indocronologist said so. By then i had been 70 pounds both because of the cfrd and the bug i had. I had not eaten enough so just started loosing the weight easily. Then i went to a diffferent indocronologist and he told me i NEEDED to eat that sugar and carbs to maintain my weight and GAIN it back!!! So i just covered my food with insulin because the easiest way to gain weight is junk food..i must admit such as candy and pasta to keep meat on your bones..lol. I eat whatever and just take insulin on a sliding scale on how my blood sugar is. I know heigher blood sugar is better than being extremely thin which as my doctor said can lead to lower lung function so it can be very bad for your health. So eat ur candy. I drink diet soda only not regular because i know its just too hard on my blood sugar. Hope i helped a bit! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[janjoe]

hope you don't mind me asking , do you know what % of people with cf will go on to develop diabetes?<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[coltsfan715]

Janet,
Here is a portion of an article on CFRD. If you click on the link it takes you to the article and at the bottom there is a link to other recommended reading on CFRD.

"The North American Cystic Fibrosis Foundation, which maintains a registry of approximately 21,000 patients, reported a diabetes prevalence of about 6% in 1998. Because most US CF centers were not screening for diabetes at the time these data were collected and CFRD is often clinically silent, this figure underestimates the true prevalence of diabetes in CF. In Denmark, OGTT screening of the entire CF population demonstrated no diabetes in patients less than 10 years of age, 12% diabetes in individuals age 10-19, and 48% diabetes in adults age 20 and older.

At the University of Minnesota, where annual oral glucose tolerance testing of CF patients is routine, only about half of children and one quarter of adults with CF have normal glucose tolerance (figure 2).

Diabetes is seen in 9% of CF children, 26% of adolescents, 35% of adults age 20-29, and 43% of adults age 30 and older. Of those with diabetes, approximately 1/3 have fasting hyperglycemia (high blood glucose levels when they wake up in the morning before they have eaten) and two-thirds have diabetes without fasting hyperglycemia. Everyone agrees that diabetes with fasting hyperglycemia is dangerous in CF and must be aggressively treated, but there is a lot of disagreement about whether diabetes without fasting hyperglycemia is dangerous. That is because there is so little scientific information about this form of CFRD."

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfww.org/pub/newsletter/nl01a/nl01af.htm">CYSTIC FIBROSIS RELATED DIABETES </a>

I tried to find when the article was written, but didn't see a date.

Hope that helps,
Lindsey

 

[thelizardqueen]

I simply just do not eat sugary things like candy, and I eat very minimal amounts of cake or pie. Only on birthday's or special occasions will I have a cake or something.

 

[Joanne]

Yes, it is recommended you not cut out carbs - which are sugars, starches - but rather use insulin.

I read that many people don't eat candy, cookies, pies.... yes those have carbs, but so do many other items, items you would never guess have carbs in them.... like legumes, corn, bananas, breads, potatoes, pasta, in addition to the obvioius sources of sugar.

Carbs are broken down in the body to sugars. So all of these have to be considered and if you are cutting down on "sugars" you need to think about all sources of carbs. But if you have CF.... do not cut out any foods, until you talk to your CF doctor, or a endro that is skilled in CF diabetes.

I have been diabetic for about 18 years, and I eat anything I want, just dose up with insulin. Well I don't eat anything I want, I do diet because transplant has now made me like the majority of the population and I can gain weight. Happy to say I have lost 45 pounds in the last year!!!

Joanne Schum

 

[anonymous]

I have always tried to eat healty and limit desserts. But since being diagnosed with CFRD last May of course now I CRAVE desserts! Go figure!!! My CF doctor said to eat WHATEVER I want and to just chase it with the insulin. However, I do limit desserts and do watch the carbs to a certain extent. For instance, if I am going to have pizza which has a TON of carbs and ALWAYS makes my sugars go high, I then try to NOT have desset. Does not always work in the summer time, I like my icecream on a hot day. I only take insulin at bedtime and I am taking pills ( Starlix) with meals and snacks. My CF doctor would like me on insulin but my endocrinologist that was referred to me by my CF doctor starting me with pills and said I can continue them as long as my sugars stay in check. So far so good. I am trying to avoid insulin with meals and snacks.

I think we should just eat what we want and chase with meds because we need the high calorie intake to maintain our weight. However, I do believe in "junk" food in moderation! You can get high calories and good fats from good food and not junk food. I eat alot of avocados, homerunn inn pizzas for lunch etc.


Hope this helps!!! Hang in there!


Jennifer 34 years old with CF and CFRD