Hi, @dlady, this is @mamacita, Volunteer Mentor for Mayo Clinic Connect. I I have many of the conditions you have mentioned, as well as IBS, Diverticulitis, and Autism. I cannot speak for anyone else, but following a basically gluten free diet has been a real lifesaver for me. It took me over one year, but I lost sixty five pounds. My A1C went down to 6.2, my blood sugars are normal, and I have tons more energy. My thinking is much clearer, my anxiety levels are down, and my Fibromyalgia flares are fewer. I also have Depression, which is much better with this way of eating. I basically count carbs, even the ones in vegetables. I have gone from a lunch sack full of meds to a small ziplock bag of prescribed medication. Two of my medicines were recalled because they were found to cause cancer. I do take a multi-vitamin and mineral every day, as well as Vitamin D, Calcium and Magnesium, and Vitamin C. My Primary Care Physician is totally on board with me trying every trick up my sleeve, the more natural the better. I hope that your health continues to improve and that you feel better very soon. I would very much like to be a part of this discussion. We can all learn from each other.
Thank you for your review of your gluten free journey. I’m just starting at age 74. After only 3 weeks of eating GF I feel so much better. My only test didn’t turn up celiac but I decided that to go with my readings and go GF.
What an awesome discussion! I think it was Einstein who said, “Information is not knowledge. The only source of knowledge is experience.”
And better yet is sharing our experiences, like we do on Connect:)
Would anyone have an interest in starting/joining a discussion about following a gluten free diet. What has worked or not worked and how it has helped or not helped. We can learn from one another.
Just advised to try Gluten Free by Immunologist
I searched gluten and didn't see a main thread for this question. Sorry if it is redundant, please direct me to the best thread.
Just advised to try Gluten Free by Immunologist
I searched gluten and didn't see a main thread for this question. Sorry if it is redundant, please direct me to the best thread.
I am at a lose what to try to eat. EVERYTHING puts me in the bathroom & the pain isn't worth it. I feel better drinking only, but I'm limited even what I can drink. Still, if I don't have something in my guts, I end up in ER from that pain. The celiac food list is shortened by limited kidney stones foods, minus allergies, minus what taste bad, & it doesn't leave much. I read where some people make it sound so easy, but, what is left after I mark off a my 'don'ts'? I'm too much of a fighter to give up though. I'm back in bed with my heating pad after another visit to the bathroom, which has become my second reading room. Thank you anyone for any help.
I am at a lose what to try to eat. EVERYTHING puts me in the bathroom & the pain isn't worth it. I feel better drinking only, but I'm limited even what I can drink. Still, if I don't have something in my guts, I end up in ER from that pain. The celiac food list is shortened by limited kidney stones foods, minus allergies, minus what taste bad, & it doesn't leave much. I read where some people make it sound so easy, but, what is left after I mark off a my 'don'ts'? I'm too much of a fighter to give up though. I'm back in bed with my heating pad after another visit to the bathroom, which has become my second reading room. Thank you anyone for any help.
Hi Moi! I have learned through the years things like chickpeas, broccoli, spinach, cauliflower, even honey nut Cheerios will cause me to have severe cramping and to feel sick. All of these are gluten free but still I stay away from them. Also, I have learned that I am intolerant to any sugar alcohols and artificial sweeteners. I am on a very strict diet and pretty much eat the same foods to stay safe. Feel free to ask me any questions you may have. Dixie
Greetings Dixie & Maria! What kind of acorns, tree bark & black rocks are you able to eat? I'm 68. When I was 42, my allergist did all the lovely tests, & said I also have reactions to the fillers & binders in pills & capsules. Try to get a dr to believe that though. I have to take a glucose injection every Wed, a cardio injection every 2nd Sat. Every time I try a single pill for heart or anything, I'm bent in half, setting a new land record to the bathroom, watching pain sweat & tears tap the floor as I rock holding my stomach. I feel better only drinking iced chamomile tea, a very small piece of salmon every 3rd day, & what sugar free gummies for Bs, turmeric, magnesiums I've been able to find. I've given more food away than I can not afford to waste funds trying. I've been fighting an ongoing UTI that has kept me on keflex & sometimes Cipro, for nearly 3 yrs. Sometimes I just have to not take them to give my intestines a break. It's not known the reason why the infection returned after a week on antibiotics. I get kidney stones that have been surrounded by infection. Had a scopy of my bladder & it looked like I was full of frog eggs there was so much bacteria. So I have to eat plain Greek yogurt to put out the fire & try to help my intestines some way. Plain broth isn't too painful, but it's always liquid in,liquid out. I take pre/probiotics every 2 days as well. Colonoscopy & endoscopy only shows deep inflammation, but I have what my Dr calls inflammation storms. It goes everywhere, but seems to have taken up residence in my joints & intestines. This sets off things like CFS & other flairs. & how can it be I am fat with all this? I was healthy & 139 for so many yrs, then after a violent event in 2000, one auto immune after another showed up, & strange infections that have me in the hospital so often I called them mini vacations. Have nearly died so many times. I'm tired physically, but it's taken an emotional toll. Now I'm to start having a care helper next week. I don't know who I am any longer. Their even afraid to put me out for surgeries because of drug reactions & I woke up just before the bypass started. Can't take pain meds or any meds because of the fillers/binders. No tap water. I was always healthy when I was a child on the farm. Goat milk, fruits, vegs, a chicken now & then or goat chops, but that changed when I was moved to the North at 7. Been sick ever since it feels like except when I moved to WA in 97 & only ate yogurt, teas & berries. Until 2000. I have so many food, med, environmental allergies I had counseling for the mourning of losing who I once was. I just accept this is how it is, but malnutrition & still fat? How? I can't live on gummie vitamins. O yes, gluten is evil. But so is non gluten. I stopped feeling hunger a long time ago. I have to set my alarm to remember to drink. It's just gone. I've gone 23 hrs with nothing because I know what's going to happen. X-rays showed constipation. How when I have diarrhea? Dr now thinks it showed swollen intestines instead. Drs have no answers by more pills that I don't dare try. They don't listen. My poor intestines. Gastro Dr apologies when he has to lightly press on anything abdominal. I don't want to think of reaching 98 like my Granny. Not like this. I even tried baby food. Wrong. Dog food? (smiling) Moí
Have you looked at the Microscopic Colitis Foundation site? perskyfarms.com When you go to the website it has a link to go to the support and information pages. Hope this is helpful.
Connect
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Thank you for your review of your gluten free journey. I’m just starting at age 74. After only 3 weeks of eating GF I feel so much better. My only test didn’t turn up celiac but I decided that to go with my readings and go GF.
These links aren’t active. FYI
@catstx, Thank you for reporting the bad links. I fixed the link in the earlier post and also listed them here:
Another resource (GF-diet) that might interest you is The Gastroenterology & GI Surgery Page on Connect https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
Here are some talks by Mayo Clinic experts, to start with:
– Tips to Avoid Cross-Contamination in Gluten-Free Foods https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/tips-to-avoid-cross-contamination-in-gluten-free-foods/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/the-gluten-free-diet-a-practical-look-1/
– Know Your Lectins https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/know-your-lectins-1/
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4 ReactionsJust advised to try Gluten Free by Immunologist
I searched gluten and didn't see a main thread for this question. Sorry if it is redundant, please direct me to the best thread.
Welcome @shadowfax. I moved your message to this Gluten-free discussion group that @guthealth started here
- Gluten-free diet: What has worked? Your tips https://connect.mayoclinic.org/discussion/gluten-free-diet/
Join members like @lyndarm @airey2 @jenglereckedbin @tona @kimass1 @dlady @tjoanne @catstx @wsh66 @baz10 @elle1233 @therjes @macjane and others learning and living gluten free.
Shadowfax, why was a gluten-free diet suggested for you? How are you doing so far? Challenges? Triumphs?
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1 ReactionI am at a lose what to try to eat. EVERYTHING puts me in the bathroom & the pain isn't worth it. I feel better drinking only, but I'm limited even what I can drink. Still, if I don't have something in my guts, I end up in ER from that pain. The celiac food list is shortened by limited kidney stones foods, minus allergies, minus what taste bad, & it doesn't leave much. I read where some people make it sound so easy, but, what is left after I mark off a my 'don'ts'? I'm too much of a fighter to give up though. I'm back in bed with my heating pad after another visit to the bathroom, which has become my second reading room. Thank you anyone for any help.
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Like -
Helpful -
Hug
4 ReactionsI cramp all the time with UC. Think I may have SIBO too. No quality of life! Maria.
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1 ReactionHi Moi! I have learned through the years things like chickpeas, broccoli, spinach, cauliflower, even honey nut Cheerios will cause me to have severe cramping and to feel sick. All of these are gluten free but still I stay away from them. Also, I have learned that I am intolerant to any sugar alcohols and artificial sweeteners. I am on a very strict diet and pretty much eat the same foods to stay safe. Feel free to ask me any questions you may have. Dixie
Greetings Dixie & Maria! What kind of acorns, tree bark & black rocks are you able to eat? I'm 68. When I was 42, my allergist did all the lovely tests, & said I also have reactions to the fillers & binders in pills & capsules. Try to get a dr to believe that though. I have to take a glucose injection every Wed, a cardio injection every 2nd Sat. Every time I try a single pill for heart or anything, I'm bent in half, setting a new land record to the bathroom, watching pain sweat & tears tap the floor as I rock holding my stomach. I feel better only drinking iced chamomile tea, a very small piece of salmon every 3rd day, & what sugar free gummies for Bs, turmeric, magnesiums I've been able to find. I've given more food away than I can not afford to waste funds trying. I've been fighting an ongoing UTI that has kept me on keflex & sometimes Cipro, for nearly 3 yrs. Sometimes I just have to not take them to give my intestines a break. It's not known the reason why the infection returned after a week on antibiotics. I get kidney stones that have been surrounded by infection. Had a scopy of my bladder & it looked like I was full of frog eggs there was so much bacteria. So I have to eat plain Greek yogurt to put out the fire & try to help my intestines some way. Plain broth isn't too painful, but it's always liquid in,liquid out. I take pre/probiotics every 2 days as well. Colonoscopy & endoscopy only shows deep inflammation, but I have what my Dr calls inflammation storms. It goes everywhere, but seems to have taken up residence in my joints & intestines. This sets off things like CFS & other flairs. & how can it be I am fat with all this? I was healthy & 139 for so many yrs, then after a violent event in 2000, one auto immune after another showed up, & strange infections that have me in the hospital so often I called them mini vacations. Have nearly died so many times. I'm tired physically, but it's taken an emotional toll. Now I'm to start having a care helper next week. I don't know who I am any longer. Their even afraid to put me out for surgeries because of drug reactions & I woke up just before the bypass started. Can't take pain meds or any meds because of the fillers/binders. No tap water. I was always healthy when I was a child on the farm. Goat milk, fruits, vegs, a chicken now & then or goat chops, but that changed when I was moved to the North at 7. Been sick ever since it feels like except when I moved to WA in 97 & only ate yogurt, teas & berries. Until 2000. I have so many food, med, environmental allergies I had counseling for the mourning of losing who I once was. I just accept this is how it is, but malnutrition & still fat? How? I can't live on gummie vitamins. O yes, gluten is evil. But so is non gluten. I stopped feeling hunger a long time ago. I have to set my alarm to remember to drink. It's just gone. I've gone 23 hrs with nothing because I know what's going to happen. X-rays showed constipation. How when I have diarrhea? Dr now thinks it showed swollen intestines instead. Drs have no answers by more pills that I don't dare try. They don't listen. My poor intestines. Gastro Dr apologies when he has to lightly press on anything abdominal. I don't want to think of reaching 98 like my Granny. Not like this. I even tried baby food. Wrong. Dog food? (smiling) Moí
Have you looked at the Microscopic Colitis Foundation site? perskyfarms.com When you go to the website it has a link to go to the support and information pages. Hope this is helpful.