possible CFRD/anemia

[Rokiss12]

SOOO...
i went to the dr. on monday, got my regular levels done (always get checked for my IGE levels b/c thats been a problem recently)

mentioned to him that i've been feeling dizzy and so he took my blood pressure... all was regular standing and sitting.

found that i lost 5 lbs since march, didnt seem like a big deal to me, but since i've NEVER had a problem gaining weight since infancy, he thought it might be. (CFRD can present as a CFer losing weight, but not putting it back on)

so he mentioned the idea of possible CFRD... i took it alright but on the inside i was FLIPPING out.

so when we got the results of my blood labs, he said my sugar was high, and iron was low. IGE... i have no idea, but hes keeping me on prednisone so they mustve been high.

i have to get a glucose level test sometime after i come off the prednisone to see if i could have CFRD (so probably in about 2 months) and i have to start iron supplements for my anemia.

BUT i first have to get tested to intestinal bleeding which could be a factor in all of this... (he thinks i could have developed it from going on the 'motrin diet' for my sinus polyups- 1,200 MG at night and morning to reduce inflamtion problems in my sinus'- but i stopped that in february)

SOOOO i guess with all this my question is... what EXACTLY is CFRD? does it meen i've eaten too much sugar? not enough good sugars? mal-nutrition? if i do infact have it, what will i have to do/what foods will i have to avoid? if i don't have it, what should i be doing to avoid it? (like eating less bad-sugary foods?)

hmm well i'll post this in my blog too as an update! thanks for anyones advice!
<3Kate

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>SOOOO i guess with all this my question is... what EXACTLY is CFRD? does it meen i've eaten too much sugar? not enough good sugars? mal-nutrition? if i do infact have it, what will i have to do/what foods will i have to avoid? if i don't have it, what should i be doing to avoid it? (like eating less bad-sugary foods?) </end quote></div>

Hey Kate,

As for CFRD I was told when I was diagnosed that the insulin my body produced was unable to get out of my pancreas due to the thick secretions our bodies produce with the CF. It is not your typical Type I or Type II case of diabetes. CFRD has characteristics of both types. I asked my docs office when I was in high school for any info they had on it and they were able to give me a book on CF education that had a chapter on CFRD. I don't know if your docs office would have something like that, maybe you could ask them.

As for foods to avoid. When I was first diagnosed I was put on a strict carb counting diet and was gaining no weight at all. Once I changed to an adult doc my doc told me that since I was underweight I could eat what I chose so long as I covered my sugar intake with insulin. I was put on insulin shots when I was diagnosed to control my sugars. I think at this point because you are not diagnosed as having CFRD (at least that is not how I took your post) that I would try to watch what I ate in regards to sugary foods i.e sodas, candies, pastas (not sugary but high carb count so they could raise your sugars) and other things like juices (fruit juices) and a lot of fruit because they have natural sugars that will affect your blood glucose as well.

I am not sure if there is a way to totally prevent the onset of diabetes, but I would try to regulate your diet a little until they decide what they are going to do as far as treatment goes. Your blood sugars may simply be high due to the prednisone. I know I have read several posts where people have said they suffer from diabetes when they are on prednisone, but at no other time. I say that about regulating your diet and sugar intake because as long as you have high blood sugars and are not taking meds for it, you could continue to lose weight and I would hate to see that happen and for you to become sick from high running blood sugars.

If you start to lose more weight I would talk to your doc again. I know I had a hard time with feeling fatigued, blurry vision, constant mood changes, nausea and being thirsty alot before I was diagnosed. Those are all symptoms of diabetes and high or low blood sugars.

Thinking of you,
Lindsey

 

[coltsfan715]

I just wanted to add I am not saying not to eat fruit and drink juice. I just know that before I was diagnosed those two things were a huge part of my diet (they still are) but they constantly made me sick because they were sending my blood sugar through the roof. Just try to moderate your intake of those a little is all I meant.

Lindsey

 

[Rokiss12]

thanks Lindsey, that helps alot!
im going to try to watch what i eat, but way before this whole thing started i had actually already tried to watch what i was eating- in terms of candy and soda. during the school year, i tried not to drink any soda what so ever, as well as candy. i did well with the soda part, and ate half of the candy i used to eat. but as the summer progress' i've started drinking more soda, and eating less candy.

its nice to know what the symptoms are, the only thing is, is that im afraid im going to start thinking i have it b/c ill find some lil stupid thing wrong and twist it into a symptom. like being dizzy... it coudl be somethign totally different, and could be from this lil cold that im getting over. and being thirsty... i think i've just always been a thirsty girl! who knows.... i just want to get these tests over and done with, even if they are going to be annoying.

another question to everyone... sorta embarassing... but has anyone ever had to have the test for intestinal bleeding (stool sample)? im wicked sketched out/nervous about it. its so embarassing!

 

[thelizardqueen]

Lindsey is right. CFRD is caused by insulin not being able to get through due to scarring and thick secretions in the pancreas. If you do have it, I don't think you'll have to change your diet - just no sugars, or at least keep the sugars to a minimum. I've practically cut sugars out and its better for my CFRD.

As for ways to prevent CFRD - there are ways, but they are not 100% fool proof. Here are some ways:

Exercise - aerobic exercise such as brisk walking, biking, or swimming totalling at least 150 minutes each week spread over at least 3 days of the week. Weightlifting 3x per week is also recommended. Exercise will lower your blood sugars and help maintain them. Many people with diabetes who work out on a regular basis are able to lower their sugar and take less insulin.

Diet - Choose low glycemic foods i.e. grains, fresh fruit insted of high-glycemic foods i.e. instant rice, white bread. If possible cut sugar out of your diet (sugary pops, candy, cookies, cake, etc), or at the very least keep them to a minimum.

"Prediabetes" is a term used when blood glucose is increased but not to the point where type 2 diabetes is diagnosed. A combination of diet and exercise has been shown to prevent or delay the onset of diabetes in people with blood glucose levels in the prediabetes range. In short, people who focus on healthy diet, healthy weight, and exercise can reduce their risk of developing diabetes.


Edited to add: While I've had CFRD for 10 years now, every once and awhile, my pancrease decides to shot out insulin once and awhile. You'll have to be carful with that, because your pancrease still produces, it just gets stuck usually.