Guest guest Posted September 13, 2009 Report Share Posted September 13, 2009 Does anyone have any advice for those of us that still " struggle " with maintaining a gluten-free diet? Any hints as to how to deal with the negative side affects after being " glutened? " I find that I'm " out of it " for a good 48 hours after I've eaten gluten. Tired, grumpy, etc... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Hi, I offer you my sympathy. I also feel tired and grumpy after eating gluten. I don't know what to do to reduce the side effects, but there are some ways to reduce your exposure to gluten, like suggesting that your friends bring take-out food to someone's home, instead of eating out. Then you can bring your own food. Also, I buy a lot of dried fruit, pecans, walnuts, fritos, and Rice Chex. Then I always take a zip-loc bag full of a combination of all of these foods with me whenever I go anywhere. That way, I'm not tempted to go to a fast food place for a snack. Hope this helps. > > Does anyone have any advice for those of us that still " struggle " with maintaining a gluten-free diet? Any hints as to how to deal with the negative side affects after being " glutened? " I find that I'm " out of it " for a good 48 hours after I've eaten gluten. Tired, grumpy, etc... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Hello, I am newly diagnosed but I have been having symptoms for so long I learned things I can do to help ease the symptoms I had no idea of what they where or was going on inside of me. When I have those times, I eat lots of protein slowly. Like meatloaf or steak or chicken. If your a vegetarian try Quinoa. Its a good protein and I like ho quickly it cooks. So what I basically do is eat a protein no canola oils, and no sugar and put fresh lemon on the meat or rice. I think one of the reaction responses is an over active acidity and that causes the some weird sensations and feelings. The lemon on your food and maybe a glass of water with lemon is really good for the acidity. I also increase my sea salt at these times to help and it feels so much better one me too. =) I also know that when I had anything that turned to sugar or is sugar it intensified the feelings of grumpyness and brain fog. Now I am only saying from experience of what I did that helped and I am sorry you are feeling bad. It will pass, and I pray you will find relief inside your strength. Be blessed, gem =) Gemma ' Locatelli "Be the change you want to see in the world!" -Gandhi From: hi7899 <webprogrammer256@...>Subject: [ ] Re: Struggling Date: Tuesday, September 15, 2009, 4:38 PM Hi,I offer you my sympathy. I also feel tired and grumpy after eating gluten. I don't know what to do to reduce the side effects, but there are some ways to reduce your exposure to gluten, like suggesting that your friends bring take-out food to someone's home, instead of eating out. Then you can bring your own food.Also, I buy a lot of dried fruit, pecans, walnuts, fritos, and Rice Chex. Then I always take a zip-loc bag full of a combination of all of these foods with me whenever I go anywhere. That way, I'm not tempted to go to a fast food place for a snack.Hope this helps.>> Does anyone have any advice for those of us that still "struggle" with maintaining a gluten-free diet? Any hints as to how to deal with the negative side affects after being "glutened?" I find that I'm "out of it" for a good 48 hours after I've eaten gluten. Tired, grumpy, etc...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 GREAT information Stan! I also feel that your QOL is very important. I could not have continued my work when I was on Gleevec!! then on Sprycel it was a little better and worked some, but on Tasigna I am back to my self and work full time. I am a realtor and I am 68 years old. If I did not have my work I would sit around and worry about my illness. I feel so good that sometimes I forget that I have CML. So everyone needs to realize that their medication can be changed to another that better agrees with them. At least I did. Why put up with all those side effects when you dont have to? It is worth a try. This is how it was for me and I hope it will be for you. Sharon _____ From: [mailto: ] On Behalf Of Goldberg Stan Sent: Thursday, March 24, 2011 7:34 AM Subject: [ ] Re: struggling Sometimes analogies work better than advise. Think of an 8 " pie. No matter how much you would like it to be 12 " it won't magically grow. The same holds true with our ability to focus. With the onset of any illness or disease, the system is taxed both physically and emotionally. What someone was able to do prior the the onset, they may not be able to do afterwards. My wife experienced this after her stroke and I believe it also applies to CML and other illnesses. Think about thresholds: with illness, the threshold at which you stopped functioning effectively is lowered. People need to make choices. They can continue doing what they have been doing realizing that the quality will suffer with the threshold being exceeded more quickly then in the past. Or they can reduce the load on their systems to a level where the threshold isn't exceeded. Quality remains, but the number of things done is reduced. I've found in both my personal life and in counseling people with various illnesses, you can't have both. 8 " pies don't become 12 " ones, no matter how much we wish they would. Hope this helps. Take Care, Stan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Hi, you didn't say what drug you were on and what dosage? And how old are your children? I can't begin to put myself in your shoes, cancer, work, kids, and you sound like a single parent? that's a lot to handle, i could only suggest you grab a time out whenever possible, take very deep breaths, and try and relax, even a little bit will help. And don't worry about the housework, just do what's necessary, and have your kids help, if they are old enough. Good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: srazzi2004 <srazzi2004@...> Subject: [ ] struggling Date: Thursday, March 24, 2011, 8:41 AM  I was diagnosed one year ago with cml, just went back to work full time as a special education preschool teacher. I am struggling working full time and raising three children and taking care of myself. Any suggestions from others dealing with life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 HI: ITs rough when your trying to work and raise children at the same time, and then to deal with a disease on top of it. I do not know what drug your on for your CML. I am on Gleevec 400mg. a day for 10 years now, and I still get side effects. It did get better as time went on, but I did have to leave my job, because when I was diagnosed I was not on Gleevec yet. The treatment I was on was wiping me out daily. Your the only one who can really knows how you feel, and you just have to handle what you can. There is always someone here to help you get through side effects and give advice, or just to listen to you vent when you need to. It helps when you have someone who is going through the same thing to help you out. A. > > I was diagnosed one year ago with cml, just went back to work full time as a special education preschool teacher. I am struggling working full time and raising three children and taking care of myself. Any suggestions from others dealing with life. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 I think QOL is important. I was diagnosed on a Friday in 2007 and went back to work Monday. It wasn't easy getting through the side effects of gleevec but it did get better with time. For the first time since dx I became really sick with a cold and maybe the flu. Hard to tell when our side effects are flu like. This was a wake up call for me. I'm taking April off as a medical leave so I can really rest and shake this weight of fatigue. I will also research the other meds. As the song my daughter listens to says -everybody dies but not every body lives. We may not have the life we had before but we can live a wonderful life. A <suzzienovember@...> wrote: >HI: ITs rough when your trying to work and raise children at the same time, and then to deal with a disease on top of it. I do not know what drug your on for your CML. I am on Gleevec 400mg. a day for 10 years now, and I still get side effects. It did get better as time went on, but I did have to leave my job, because when I was diagnosed I was not on Gleevec yet. The treatment I was on was wiping me out daily. >Your the only one who can really knows how you feel, and you just have to handle what you can. There is always someone here to help you get through side effects and give advice, or just to listen to you vent when you need to. It helps when you have someone who is going through the same thing to help you out. > A. > > >> >> I was diagnosed one year ago with cml, just went back to work full time as a special education preschool teacher. I am struggling working full time and raising three children and taking care of myself. Any suggestions from others dealing with life. >> > > Quote Link to comment Share on other sites More sharing options...
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