Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 This is all so true Michele. I just got the results of my gluten testing today and I tested negative for a gluten allergy. I have also just had a full panel of other foods tested and every last food came up negative! So, I am going to now start the Gluten-free diet anyway and see if it makes any difference in the way I feel. I am aspirin desensitized and so far, in 2 years, the polyps have not returned. However, I still deal with the chronic sinus infections and, I too, suspect food sensitivities. Jane From: Keefer <julie.keefer@ gmail.com>Subject: RE: Gluten-free dietsamters@groups .comDate: Thursday, February 5, 2009, 8:56 PM Considering so many of us have different symptoms and find different things that work, I don’t think a general statement can be said that a gluten-free diet will help all of us. However, it is relatively easy to significantly reduce your gluten intake, a bit harder to go gluten-free (there are a lot of weird things out there with gluten in them!) so therefore it is worth trying for a couple of weeks or preferably longer to see how it affects your symptoms! I actually think it is more the fact that I eat low-carb and not that I eat low-wheat that makes me feel better. I do have issues with my blood sugar when I eat high-carb. I’ve had those symptoms my whole life though and the Samters is a lot newer. Of course, the Samters developed after I started eating low-carb. Sometimes I wonder if eating low carb most of the time and then flip-flopping back and forth, which totally mucks up my blood sugar and stomach, couldn’t have had some other affect on me? Every time I eat carbs and then go through the hell that is going back low carb I swear I won’t do it again. But those carbs are just so tasty! I actually really wanted my doc to say I was allergic because then it would give me a reason to stick to low-carb/wheat free other than “I think it might help some.” K. From: samters@groups .com [mailto:samters] On Behalf Of Jane MarinoSent: Thursday, February 05, 2009 8:34 PMsamters@groups .comSubject: Re: Gluten-free diet I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy? Jane __._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Jane, Yes, I would start eliminating foods to see what works. It is so great to not have sinus problems! Sometimes I would go through 1/2 box of tissues in 1 hour my nose would run so bad. For me, I had eliminated so many things in my diet, but my sinus problems persisted. I knew something was still not right. I was still eating something that my body couldn't handle. One morning I ate some oatmeal (with wheat stuff in it) and 2 pieces of homemade wheat bread. A couple of hours later I was in bed with what felt like a horrible cold. I felt tired and stuffed up for 6 hours. Zyflo helped some, but I had to take 4 of them and it took a long time for it to kick in. At that point, I looked at the ingredients of both and saw "wheat" as the common ingredient. I still was puzzled by this... I mean, wheat causing sinus problems? But when I ate something else two days later with wheat, I again felt really bad. I looked it up on the internet and yes, it can cause sinus problems and other problems. I think you will be able to tell fairly quickly if gluten is causing your sinus problems. I feel 100% better after just 1 1/2 weeks. Michele From: Keefer <julie.keefer@ gmail.com>Subject: RE: Gluten-free dietsamters@groups .comDate: Thursday, February 5, 2009, 8:56 PM Considering so many of us have different symptoms and find different things that work, I don’t think a general statement can be said that a gluten-free diet will help all of us. However, it is relatively easy to significantly reduce your gluten intake, a bit harder to go gluten-free (there are a lot of weird things out there with gluten in them!) so therefore it is worth trying for a couple of weeks or preferably longer to see how it affects your symptoms! I actually think it is more the fact that I eat low-carb and not that I eat low-wheat that makes me feel better. I do have issues with my blood sugar when I eat high-carb. I’ve had those symptoms my whole life though and the Samters is a lot newer. Of course, the Samters developed after I started eating low-carb. Sometimes I wonder if eating low carb most of the time and then flip-flopping back and forth, which totally mucks up my blood sugar and stomach, couldn’t have had some other affect on me? Every time I eat carbs and then go through the hell that is going back low carb I swear I won’t do it again. But those carbs are just so tasty! I actually really wanted my doc to say I was allergic because then it would give me a reason to stick to low-carb/wheat free other than “I think it might help some.” K. From: samters@groups .com [mailto:samters] On Behalf Of Jane MarinoSent: Thursday, February 05, 2009 8:34 PMsamters@groups .comSubject: Re: Gluten-free diet I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy? Jane __._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 What irritates me the most about this... is that I really suffered, and almost lost my life a couple of times. I had severe asthma and the doctors in the ER (and it's a hospital in a BIG major city) knew me by name. They kept saying, "why are you having these attacks?" I wish some doctor would have put me on an elimination diet early on. My doctor told me it wasn't food related because of my allergy tests. At first, I believed him. So I kept going to the ER fighting for my life. I kept telling him that my reactions occurred usually after I ate. I told him it IS food related. But the ER tests came back that my IgE levels were normal. So, on my own, I started eliminating foods. That probably isn't the best method. It's hard. I think my body craved the foods that hurt it the most. I think having a doctor who knows the elimination diet to help you is probably the best way to do it - unless you have tremendous will power or a way of writing down every thing you eat. My asthma improved after I stopped salicilates. That was a relief, and I thought "at least I can live with sinus problems". But still, my quality of life was poor with my frequent, and quick onset of episodes of what I can only describe as ...the feeling you have when you are at the worst point of a cold.....sinus inflammation, fatique and sometimes joint pain. It just took my entire body down. Then after a couple of hours and with double doses of Zyflo, I would feel fine. I knew my problem was leukrotrine related. Zyflo was the only thing that helped. That's when I started paying even further attention to what little I was left eating. After realizing that it might be wheat, I wasn't depressed like I was with salicilates. I mean, I really went through a funk with the first change in diet. The Whoa Poor Me, thing. But with the wheat discovery I was elated! I had hope that I could finally feel normal again. Even though a very strict diet isn't fun it is FAR better than the alternative. I have my life back. It's a powerful feeling. Michele From: Keefer <julie.keefer@ gmail.com>Subject: RE: Gluten-free dietsamters@groups .comDate: Thursday, February 5, 2009, 8:56 PM Considering so many of us have different symptoms and find different things that work, I don’t think a general statement can be said that a gluten-free diet will help all of us. However, it is relatively easy to significantly reduce your gluten intake, a bit harder to go gluten-free (there are a lot of weird things out there with gluten in them!) so therefore it is worth trying for a couple of weeks or preferably longer to see how it affects your symptoms! I actually think it is more the fact that I eat low-carb and not that I eat low-wheat that makes me feel better. I do have issues with my blood sugar when I eat high-carb. I’ve had those symptoms my whole life though and the Samters is a lot newer. Of course, the Samters developed after I started eating low-carb. Sometimes I wonder if eating low carb most of the time and then flip-flopping back and forth, which totally mucks up my blood sugar and stomach, couldn’t have had some other affect on me? Every time I eat carbs and then go through the hell that is going back low carb I swear I won’t do it again. But those carbs are just so tasty! I actually really wanted my doc to say I was allergic because then it would give me a reason to stick to low-carb/wheat free other than “I think it might help some.” K. From: samters@groups .com [mailto:samters] On Behalf Of Jane MarinoSent: Thursday, February 05, 2009 8:34 PMsamters@groups .comSubject: Re: Gluten-free diet I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy? Jane __._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 , I am so happy for you. I do believe foods play a big part in the problems we have. Congratulations on your strength! I hope to have it someday too and be able to give up some foods. I do believe the things you crave are the things you are allergic to. Do you have some weird non food cravings ever? I have a craving for chlorine....when I walk past a public swimming pool I have to fight very hard not to jump in and inhale the water. Very strange!! When I was pregnant I craved the hand soap I used at work. Tami Re: Gluten-free diet I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy? Jane __._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Tami, I have to say for me this was really bringing my life down. I just got tired of feeling so sick every day. I think if I had a milder case, I wouldn't have figured it out and/or just dealt with it. It use to be hard going to the grocery store or seeing a pizza commercial on TV. But then the thoughts of what happens to me... and I overcome it pretty quickly. I'm well on my way to finding new foods I love on my diet. And like I said, I can eat other things, just not very often. I've never had those other cravings.... not that I am aware of. I do like certain smells, and chlorine is one of them. But not enough to jump in!! I wonder why you feel that way... Michele From: Keefer <julie.keefer@ gmail.com>Subject: RE: Gluten-free dietsamters@groups .comDate: Thursday, February 5, 2009, 8:56 PM Considering so many of us have different symptoms and find different things that work, I don’t think a general statement can be said that a gluten-free diet will help all of us. However, it is relatively easy to significantly reduce your gluten intake, a bit harder to go gluten-free (there are a lot of weird things out there with gluten in them!) so therefore it is worth trying for a couple of weeks or preferably longer to see how it affects your symptoms! I actually think it is more the fact that I eat low-carb and not that I eat low-wheat that makes me feel better. I do have issues with my blood sugar when I eat high-carb. I’ve had those symptoms my whole life though and the Samters is a lot newer. Of course, the Samters developed after I started eating low-carb. Sometimes I wonder if eating low carb most of the time and then flip-flopping back and forth, which totally mucks up my blood sugar and stomach, couldn’t have had some other affect on me? Every time I eat carbs and then go through the hell that is going back low carb I swear I won’t do it again. But those carbs are just so tasty! I actually really wanted my doc to say I was allergic because then it would give me a reason to stick to low-carb/wheat free other than “I think it might help some.” K. From: samters@groups .com [mailto:samters] On Behalf Of Jane MarinoSent: Thursday, February 05, 2009 8:34 PMsamters@groups .comSubject: Re: Gluten-free diet I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy? Jane __._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Wow. I am glad you discovered what made you feel so bad and that not eating wheat is working! It is very frustrating to have doctors think you are nuts and not offer any useful info. I saw an allergist recently who swore that wheat allergy does not cause sinus-related issues, though she added she has patients who swear it does. I told her flat out when I ate a lot of wheat, I got stuffed up. She said she might have an intern look into it and see what she could dig up, I guess enough patients had claimed the same thing I did for her to get intrigued. But my allergy test was negative for wheat. I fortunately have not had symptoms as bad as you but I do feel a lot better when I watch what I eat (as I sit her getting stuffed up drinking a glass of wine! Lol!) I do find I can tolerate things in small doses and my nose might get stuffy for an evening but I am fine in the morning, esp. after irrigating! I can’t and won’t give up wine!!! K. From: samters [mailto:samters ] On Behalf Of michele Sent: Tuesday, February 10, 2009 9:32 PM samters Subject: RE: Gluten-free diet What irritates me the most about this... is that I really suffered, and almost lost my life a couple of times. I had severe asthma and the doctors in the ER (and it's a hospital in a BIG major city) knew me by name. They kept saying, " why are you having these attacks? " I wish some doctor would have put me on an elimination diet early on. My doctor told me it wasn't food related because of my allergy tests. At first, I believed him. So I kept going to the ER fighting for my life. I kept telling him that my reactions occurred usually after I ate. I told him it IS food related. But the ER tests came back that my IgE levels were normal. So, on my own, I started eliminating foods. That probably isn't the best method. It's hard. I think my body craved the foods that hurt it the most. I think having a doctor who knows the elimination diet to help you is probably the best way to do it - unless you have tremendous will power or a way of writing down every thing you eat. My asthma improved after I stopped salicilates. That was a relief, and I thought " at least I can live with sinus problems " . But still, my quality of life was poor with my frequent, and quick onset of episodes of what I can only describe as ...the feeling you have when you are at the worst point of a cold.....sinus inflammation, fatique and sometimes joint pain. It just took my entire body down. Then after a couple of hours and with double doses of Zyflo, I would feel fine. I knew my problem was leukrotrine related. Zyflo was the only thing that helped. That's when I started paying even further attention to what little I was left eating. After realizing that it might be wheat, I wasn't depressed like I was with salicilates. I mean, I really went through a funk with the first change in diet. The Whoa Poor Me, thing. But with the wheat discovery I was elated! I had hope that I could finally feel normal again. Even though a very strict diet isn't fun it is FAR better than the alternative. I have my life back. It's a powerful feeling. Michele From: Keefer <julie.keefer@ gmail.com> Subject: RE: Gluten-free diet samters@groups .com Date: Thursday, February 5, 2009, 8:56 PM Considering so many of us have different symptoms and find different things that work, I don’t think a general statement can be said that a gluten-free diet will help all of us. However, it is relatively easy to significantly reduce your gluten intake, a bit harder to go gluten-free (there are a lot of weird things out there with gluten in them!) so therefore it is worth trying for a couple of weeks or preferably longer to see how it affects your symptoms! I actually think it is more the fact that I eat low-carb and not that I eat low-wheat that makes me feel better. I do have issues with my blood sugar when I eat high-carb. I’ve had those symptoms my whole life though and the Samters is a lot newer. Of course, the Samters developed after I started eating low-carb. Sometimes I wonder if eating low carb most of the time and then flip-flopping back and forth, which totally mucks up my blood sugar and stomach, couldn’t have had some other affect on me? Every time I eat carbs and then go through the hell that is going back low carb I swear I won’t do it again. But those carbs are just so tasty! I actually really wanted my doc to say I was allergic because then it would give me a reason to stick to low-carb/wheat free other than “I think it might help some.” K. From: samters@groups .com [mailto:samters@ groups. com] On Behalf Of Jane Marino Sent: Thursday, February 05, 2009 8:34 PM samters@groups .com Subject: Re: Gluten-free diet I sure wish I understood all of this. Any recommendation on how one of us could begin studying this for better understanding? I was just Gluten tested today. I'll get my test results in a week. Do you all feel that those of us with Samters benefit from a Gluten free diet even if we do not test positive for a gluten allergy? Jane __._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Wow, Michele, it's great that you've figured out what foods cause you problems, but how ridiculous that no one suggested an elimination diet earlier. One of my friends, a physician's assistant, commented on my sinuses and figured out that it was wheat right away (well, she has a wheat allergy too). So Jane, I noticed a difference right after I cut out wheat, but this was before I realized I had Samter's: my symptoms improved so that I could breathe, but I still couldn't smell and was still congested. A month later I figured out I had Samter's and here I am....I do consider myself very lucky, as despite having had asthma my whole life, it seems like it is mild compared to some, and it seems like I can go for longer between bursts of prednisone. However, I might just chalk this up to being relatively young (31), maybe I have some horrible things to look forward to! Quote Link to comment Share on other sites More sharing options...
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