I have dealt with lymphatic colitis for 40 years. I am 76 now and have just been treated for H-pylori 4 months ago. My breath test has shown Fructose Malabsorption rather then SIBO. Not sure I am glad for this diagnosis. The SIBO I could treat with antibiotics and not as strict a diet. I see my doctor this week and then a dietitian to learn how to eat very different from what I have been eating with the colitis. One diet seems to hinder the other. I feel to old to change my ways but something else to learn now. I was never a real sweet eater until I found out I can't have it. LOL There are so many things I have to throw out and I plan to have one cupboard just for me. My DH can eat anything and I make sweets for him all the time, what an adjustment. Sorry if I sound a little down or pessimistic about this, I know over time I will adjust. I have been reading some of your posts and am encouraged by them. I will return with my journey after Wednesday.
Hi Lelia, I haven't been on the site for the 3 weeks I was at Mayo. So many tests and consultations. I do have a diagnosis of (CIP) which I did not realize is a rare potentially disabling gastrointestinal disorder characterized by abnormalities affecting involuntary coordinated muscular contractions (a process called peristalsis) of the gastrointestinal (GI) tract. One cause could be Mixed Connective Tissue Disorder or numerous other things. It can go into Cachexia which is a physical wasting syndrome characterized by loss of weight and muscle mass. I was hoping for better news. The doctor has me on a plan which is not working very well. I will be talking with him again on the 30th.Thanks again for all your help and support. Elaine
Hi Elaine, I was about to send you a message to see how things came out. I wish you had better news, but it might take some time to get things under control so hang in there. I'm glad you finally got a diagnosis. Keep us posted. Lelia
Hi Elaine, I was about to send you a message to see how things came out. I wish you had better news, but it might take some time to get things under control so hang in there. I'm glad you finally got a diagnosis. Keep us posted. Lelia
Thanks for the encouragement. I need it right now. Hopefully, things will get better in time. I've been doing more research on CIP but there is not a lot about diet. The nutrition people said one thing but the doctor said the opposite so it's hard to know what to do. I have a lot of questions for him when I do get to talk to him again. I will keep you posted. Elaine
I have dealt with lymphatic colitis for 40 years. I am 76 now and have just been treated for H-pylori 4 months ago. My breath test has shown Fructose Malabsorption rather then SIBO. Not sure I am glad for this diagnosis. The SIBO I could treat with antibiotics and not as strict a diet. I see my doctor this week and then a dietitian to learn how to eat very different from what I have been eating with the colitis. One diet seems to hinder the other. I feel to old to change my ways but something else to learn now. I was never a real sweet eater until I found out I can't have it. LOL There are so many things I have to throw out and I plan to have one cupboard just for me. My DH can eat anything and I make sweets for him all the time, what an adjustment. Sorry if I sound a little down or pessimistic about this, I know over time I will adjust. I have been reading some of your posts and am encouraged by them. I will return with my journey after Wednesday.
Hi, I am wondering if anyone has experienced anything similar to this. I’m 20 years old and have suffered from nausea and burning in my throat for several years now. I have seen two GI doctors who have tried a few different PPIs and have tested me for many things, but I continue to get worse. Currently I am diagnosed with GERD and Fructose Malabsorption. PPIs seem to help with “regular” heartburn which I would get after eating a meal, but the burning in my throat is something different. It comes out of nowhere, usually two or three hours after I have eaten something or when I wake up in the morning. It will last for 2-3 days (sometimes more) straight with severe nausea, bloating, and gas. During these spells I can barely eat anything and medicines like Gaviscon, Zantac, and Pepto don’t even touch it. Then, I will wake up the next day after having a spell and the burning will be gone, but I am left with a queasy/nauseous feeling most of the time. I have drastically changed my diet and don’t eat or drink anything acidic or irritating. I don’t have coffee, chocolate, sauces, fried foods, etc. I also don’t smoke and I am pretty underweight. Does anyone have any ideas or tips? I am so desperate for relief that I am willing to try anything.
Hi, I am wondering if anyone has experienced anything similar to this. I’m 20 years old and have suffered from nausea and burning in my throat for several years now. I have seen two GI doctors who have tried a few different PPIs and have tested me for many things, but I continue to get worse. Currently I am diagnosed with GERD and Fructose Malabsorption. PPIs seem to help with “regular” heartburn which I would get after eating a meal, but the burning in my throat is something different. It comes out of nowhere, usually two or three hours after I have eaten something or when I wake up in the morning. It will last for 2-3 days (sometimes more) straight with severe nausea, bloating, and gas. During these spells I can barely eat anything and medicines like Gaviscon, Zantac, and Pepto don’t even touch it. Then, I will wake up the next day after having a spell and the burning will be gone, but I am left with a queasy/nauseous feeling most of the time. I have drastically changed my diet and don’t eat or drink anything acidic or irritating. I don’t have coffee, chocolate, sauces, fried foods, etc. I also don’t smoke and I am pretty underweight. Does anyone have any ideas or tips? I am so desperate for relief that I am willing to try anything.
The burning could be cause be GERD resulting from fructose malabsorption. You say you get bloating and gas, and that is symptom of fm big time. Have you read through this entire fm discussion? There are tips on what to eat and not eat, recipes, finding drugs yo can tolerate, etc.
I have dealt with lymphatic colitis for 40 years. I am 76 now and have just been treated for H-pylori 4 months ago. My breath test has shown Fructose Malabsorption rather then SIBO. Not sure I am glad for this diagnosis. The SIBO I could treat with antibiotics and not as strict a diet. I see my doctor this week and then a dietitian to learn how to eat very different from what I have been eating with the colitis. One diet seems to hinder the other. I feel to old to change my ways but something else to learn now. I was never a real sweet eater until I found out I can't have it. LOL There are so many things I have to throw out and I plan to have one cupboard just for me. My DH can eat anything and I make sweets for him all the time, what an adjustment. Sorry if I sound a little down or pessimistic about this, I know over time I will adjust. I have been reading some of your posts and am encouraged by them. I will return with my journey after Wednesday.
Hang in there! You do adjust over time and even get so you don't want sweets because you know the awful side effects they will cause. There's a lot of info in this fm discussion from the beginning, including foods to eat/not eat, finding drugs and supplements that are ok, etc. Your message reminds me of all the food I had to throw out also. My husband still eats sweets he buys ( I don't make any), but he doesn't eat them around me which is nice.
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What does SIBO stand for?
It stands for Cronic Intestinal Pseudo-Obstruction.
Hi Elaine, I was about to send you a message to see how things came out. I wish you had better news, but it might take some time to get things under control so hang in there. I'm glad you finally got a diagnosis. Keep us posted. Lelia
SIBO stands for small intestinal bacterial overgrowth.
Thanks for the encouragement. I need it right now. Hopefully, things will get better in time. I've been doing more research on CIP but there is not a lot about diet. The nutrition people said one thing but the doctor said the opposite so it's hard to know what to do. I have a lot of questions for him when I do get to talk to him again. I will keep you posted. Elaine
I have dealt with lymphatic colitis for 40 years. I am 76 now and have just been treated for H-pylori 4 months ago. My breath test has shown Fructose Malabsorption rather then SIBO. Not sure I am glad for this diagnosis. The SIBO I could treat with antibiotics and not as strict a diet. I see my doctor this week and then a dietitian to learn how to eat very different from what I have been eating with the colitis. One diet seems to hinder the other. I feel to old to change my ways but something else to learn now. I was never a real sweet eater until I found out I can't have it. LOL There are so many things I have to throw out and I plan to have one cupboard just for me. My DH can eat anything and I make sweets for him all the time, what an adjustment. Sorry if I sound a little down or pessimistic about this, I know over time I will adjust. I have been reading some of your posts and am encouraged by them. I will return with my journey after Wednesday.
Hi, I am wondering if anyone has experienced anything similar to this. I’m 20 years old and have suffered from nausea and burning in my throat for several years now. I have seen two GI doctors who have tried a few different PPIs and have tested me for many things, but I continue to get worse. Currently I am diagnosed with GERD and Fructose Malabsorption. PPIs seem to help with “regular” heartburn which I would get after eating a meal, but the burning in my throat is something different. It comes out of nowhere, usually two or three hours after I have eaten something or when I wake up in the morning. It will last for 2-3 days (sometimes more) straight with severe nausea, bloating, and gas. During these spells I can barely eat anything and medicines like Gaviscon, Zantac, and Pepto don’t even touch it. Then, I will wake up the next day after having a spell and the burning will be gone, but I am left with a queasy/nauseous feeling most of the time. I have drastically changed my diet and don’t eat or drink anything acidic or irritating. I don’t have coffee, chocolate, sauces, fried foods, etc. I also don’t smoke and I am pretty underweight. Does anyone have any ideas or tips? I am so desperate for relief that I am willing to try anything.
It's chronic intestinal pseudo-obstruction.
The burning could be cause be GERD resulting from fructose malabsorption. You say you get bloating and gas, and that is symptom of fm big time. Have you read through this entire fm discussion? There are tips on what to eat and not eat, recipes, finding drugs yo can tolerate, etc.
Hang in there! You do adjust over time and even get so you don't want sweets because you know the awful side effects they will cause. There's a lot of info in this fm discussion from the beginning, including foods to eat/not eat, finding drugs and supplements that are ok, etc. Your message reminds me of all the food I had to throw out also. My husband still eats sweets he buys ( I don't make any), but he doesn't eat them around me which is nice.