Unfortunately my gastroparesis was the start of a lot of serious life threatening health problems about 3 years post liver transplant. I have severe gastroparesis unfortunately. Exclusively J tube fed and told not to eat solid foods. Only liquid. I also have chronic pancreatic failure and chronic intestinal failure and early stage COPD. I've watched your content for a couple years and I've always loved your positivity with these things. I wish I had more of that. I tend to just try and not think about it. I actually bought one of your books but I haven't finished it yet. Much love.
Hi, Quinn. I'm sorry to hear about everything that you're struggling with. You've been through so much, but you're clearly very resilient. Please know that I'm sending you lots of love and good wishes ❤️
Thank you Crystal, I have been diagnosed 4 years ago . And you have helped me so much in dealing physically and emotionally with gastroparesis. . I appreciate all your hard work in helping us cope with this disease
Thank you, Crystal for all you do for this Community. I followed you early on in my diagnosis. Don't you worry about the "haters", you have done MORE for the people that have followed you thru this journey! I have come to find out that a lot of the haters are people that say, "I'm sicker than you" and it becomes a "competition" for them. KEEP UP THE GREAT WORK!! PS...I think it is AWESOME that you are going to drop Episode 1 of your Podcast on August 1, the same month that is Gastroparesis Awareness Month!!
Thanks for the update, Crystal. I've had gastroparesis for about 10 years and i followed you early on, and appreciated your positiveness in spite of gp being such a challenge. I'm sorry you've gotten some negative comments, but since it's such a variable disease I'm sure there are folks out there that are frustrated when they have a really severe case with all the effects. My 4 hour eat study put me in a severe category, so I'm really relieved my symptoms are not always that bad. My cousin tested more mild, but has a lot of pain. One thing I've noticed is that food additives like thickeners and natural fibers are horrible for my symptoms. I avoid inulin (read, not insulin!), carragenin, chickory root, etc. After a lot of trial and error, I've found the no-no foods I can't eat, and learned that i can have a tiny bit more fat, but absolutely needed to stick with very low fiber. It's been a journey for sure, but day to day I can eat a little less carefully, and use the step up/step down diet when I sense trouble coming. I'll look forward to your new endeavors🙂
Thanks, Kate! So true. I have so much compassion for those who are really struggling right now; I remember what that feels like. The variability of the condition can be encouraging (my emptying has been everything from severely delayed to normal in the past 20 years) but also so frustrating. I'm so glad you've found what works for you and things are getting easier!! Thanks for your continued support. ❤️
Thank you Crystal for your work, it has helped me a lot :-). I wonder, in those two years where your gastric emptying tests came back normal, did you feel better? I did a gastric emptying test recently and it came back normal, but my symptoms are still there. Very frustrating.
So glad you've found my work helpful! Yes, my symptoms improved significantly (though not completely) when my gastric emptying normalized. What you're experiencing, though, isn't uncommon and I think it's a source of frustration for a lot of people. Gastric emptying time is the best diagnostic measurement we have for gastroparesis but it's pretty well known among clinicians that the degree of delay in gastric emptying doesn't always correspond to the degree of symptoms experienced. What's more, it's very possible to have gastroparesis-like symptoms even without a delay in gastric emptying, this is usually called functional dyspepsia. It's likely the symptoms that so many of us experience aren't solely related to the delay in gastric emptying -- we just know what they are related to, yet, so that's what we can continue to test and document. Most good GI docs will treat based on symptoms not just testing, so I hope you're still receiving the support that you need. And the great thing about the comprehensive management plan that I share is that it's equally appropriate and helpful for gastroparesis as it is functional dyspepsia. Hope that's helpful! Sending you lots of good wishes!
You might want to talk with your doctor about a full GI transit test if you've not had one, which looks at the transit time of the small intestine and the colon, in addition to the stomach. That can help identify where the delay(s) are present and guide treatment options.
@@csaltrelli Thanks a lot. Yes, your content and your personality has been helping me a lot :-). Well it is strange because over the years, since 2007, I have had 3 gastric emptying tests that showed severe gastroparesis. And then one that showed that it was much better and the last one showed no delay at all. But I am still extremely bloated and uncomfortable. At the moment I have no treatment for that but I will see a new GI doctor in a few months... Very frustrating indeed to not know what happens in the body. The diagnosis functional dyspepsia means "we don't know what is going on" :-(.
I was great just like you for a while. at least a year. then BAM, I turned 43 1/2 and that pre menopause symptoms started. It through me into the worst flair i have had since diagnosis in 2017. I am now 44 as of June and still struggling.
I'm sorry to hear you're dealing with increased symptoms, Quinn. I hope that you're able to find some relief soon. I think what feels so reassuring to me at this point, especially like you say at an age when hormones are definitely changing and already seeming to have an effect, is that I'm just not afraid of my experience anymore, whatever that might be. I feel like I've been through it all and here I am 🙈. I really hope you feel better soon! I'll be sending good thoughts your way ❤️
Crystal, you saved my life all of those years ago with by your l and I, too, and thriving with Gastroparesis. I still have it, but symptoms are manageable and like you, my life is fulfilling. You look wonderful, by the way! Sending so much love and thank you for all you do for us❤. 21:04
Interesting! I hadn't heard of that before. I'll have to do a little more research. As far as reflux, my testing has shown that I don't have a lot of actual acid reflux. I no longer have a gallbladder, so for me, it's more bile and non-acid reflux. So I don't take PPIs or other acid blockers, but I do use a couple of supplements that have been helpful. I talk about them in this video: th-cam.com/video/D7-lmFDOUB0/w-d-xo.html For me, a lot of walking and trying to avoid bloating/distention as much as possible seems to be really helpful, as well.
@@csaltrellithank you for your quick response. Yes please, it would be good to have your thoughts on the gastric alimtery test. Non acid reflux? Is this also known as NERD? How is this diagnosed? My bloating and distension is very painful. I don't know what to do.
Hi Crystal, glad to hear that you are doing so well. I wondered if in your GP journey if you've struggled with SIBO as so many if us do. If so, what helped you? It is chronic for me as I am tube fed and my stomach, small intestine and colon are all severely impacted with GP. I am waiting to find out if I am a candidatefor surgery as I do not qualify for the stimulator, botox or gpoem and none of the meds or supplements have helped. I am 5'8" and 99 lbs. I feel funny considering surgery when SIBO so negatively impacts my small intestinal motility. But my docs don't see any point in treatment for SIBO. They tell me it will just come back because of GP. I just wondered if you had any thoughts on this. Thanks for all of your advocacy for our community!
Hi, there! I did have SIBO and was initially treated with antibiotics, which provided some relief. Later it was retreated by a naturopath with a variety of supplements but that made my symptoms worse and I wasn't able to follow through. I do still experience bloating and distention but haven't been re-tested in a long time. Reducing certain FODMAPs has helped me somewhat. I'm sorry that you haven't found anything helpful for you yet. I think I would ask more questions of the doctors regarding the choice to not treat the SIBO. I would want to know the downside of treatment, especially in the context of weight loss and suboptimal nutrition, aside from it coming back. Treating the SIBO could help restore some nutritional stability and alleviate at least some of your symptoms, even if it's intermittent or temporary. I'm not a doctor, of course, that's just my opinion and some food for thought. I hope that you're able to find some relief soon! I'll be sending lots of good thoughts your way ❤️
Hello, I struggled with gastroparesis and Sibo. I did neyomcin and xifaxan off and on for about a year combined with hyperbaric oxygen to help heal my gut from the inside . I also did a colonic cleanse. Hyperbaric along with the antibiotics worked well for me, I heard my stomach growl for the first time in years after my first treatment. Also check your hormones, for me it was adrenal insufficiency and hypothyroidism which are important for digestion . I'm doing well now . Hope this helps
@@csaltrelli Thank you Crystal, I agree with you about treating the SIBO even if for temporary relief and weight gain. Just need a different doctor I guess. I tried the herbals too and had the same experience you did, symptoms got much worse so I couldn't do that. Low FODMAP didn't help. It's frustrating too because all of the 2.0 tube feed formulas are loaded with corn syrup and Kate's Farm and Compleat are loaded with high FODMAP ingredients. The only tube feed option for SIBO is Elemental which is too low calorie for me and makes constipation much worse. I'm going to contact Abbott and Nestle and Kate's and ask for them to consider a higher calorie low fodmap feed. If that existed, it could keep me off of TPN. Thanks for sharing your insights!
Did any natural prokinetics ever work for you - ginger, artichoke etc? Also, was the abdominal massages you used to receive due to ur EDS able to be done at home? I’m curious if I could try something similar on myself.
I've tried all kinds of herbal things over the years and ginger has been the one that I continue to use, more for the anti-nausea properties than as a prokinetic, though. I have a post about it here: www.livingwellwithgastroparesis.com/blog/gastroparesis-ginger?rq=ginger Iberogast was also helpful to me, more as a prokinetic: www.livingwellwithgastroparesis.com/blog/iberogast-for-dyspepsia-gp-ibs?rq=iberogast As far as the abdominal work, I don't think I would do it myself unless instructed by a practitioner. I've had a lot of abdominal work that has made my symptoms significantly worse and I wouldn't want to do that to myself!
I don't because my practitioner retired and I haven't found anyone else who does the same kind of bodywork. Fortunately, my EDS symptoms have been much less bothersome over the last couple of years, I think largely related to a reduction in mind-body stress (the pandemic was really hard for me).
I was wondering what happened with you. I can't find any new updates with gastroparesis. Mine has been over 10 years, what works with you on bowels movements. The Tea, smooth move works the best, but I only use it every month or so. I would like to see how people does it 24 hours a day. Glad you are doing better
Hi, Juanita! I used to have colonic inertia, which was very difficult to manage without stimulant laxatives, but I have more alternating IBS type symptoms now. I found that reducing my consumption of shakes and bars with protein powder helped quite a bit with regular bowel movements, as has eating a little bit higher fiber and fat than I did in the past. My bowel symptoms seem to vary with my hormonal cycle, so I'm more cognizant of that during certain times of the month and try to avoid foods that exacerbate constipation, make sure I'm drinking enough water, and getting regular daily physical exercise. I do have an old video on constipation, which may be helpful if you haven't seen it before: th-cam.com/video/c322eoNk8G4/w-d-xo.html
This video might be helpful for you: th-cam.com/video/bJg-6NiUQGU/w-d-xo.html As a general guideline, about 1-1/2 cups of food is a good starting point for small meals. Many people find eating every 2 to 3 hours works well for them, although some people do better with slightly smaller meals less frequently (4 meals a day rather than 6, for example). There's a lot of experimentation involved to really find what works best for each individual but the video above goes through 10 guidelines that will help you with that. You might also want to download my Quick Start Guide to GP Management is you're new to the condition and trying to figure out how to best manage symptoms: www.livingwellwithgastroparesis.com/quick-start-guide-to-gastroparesis-management Hope that helps!
I was assessed in June and was told in the medical report that I am fit to return to work and that I am exaggerating my symptoms. I am struggling and will be appealing
There are people who follow a vegan gastroparesis-friendly diet but in that case, I really recommend you work with a nutritionist who can be sure you're getting all necessary nutrients. This post might be somewhat helpful, though it's not specific to following a vegan diet: www.livingwellwithgastroparesis.com/blog/faq-how-do-i-manage-multiple-dietary-requirements
I've had two normal stomach emptying. One following botox injections but still had the symptoms. I also had gastric alimetry test which is a tool by team in. New Zealand but again same symptoms. Have you come across gastric alimtery test?
Unfortunately my gastroparesis was the start of a lot of serious life threatening health problems about 3 years post liver transplant. I have severe gastroparesis unfortunately. Exclusively J tube fed and told not to eat solid foods. Only liquid. I also have chronic pancreatic failure and chronic intestinal failure and early stage COPD. I've watched your content for a couple years and I've always loved your positivity with these things. I wish I had more of that. I tend to just try and not think about it. I actually bought one of your books but I haven't finished it yet. Much love.
Hi, Quinn. I'm sorry to hear about everything that you're struggling with. You've been through so much, but you're clearly very resilient. Please know that I'm sending you lots of love and good wishes ❤️
I'm so glad I found you. ❤
So glad you're here!
Thank you Crystal, I have been diagnosed 4 years ago . And you have helped me so much in dealing physically and emotionally with gastroparesis. . I appreciate all your hard work in helping us cope with this disease
Thank you, Suzanne! Sending lots of love your way❤️
Thank you, Crystal for all you do for this Community. I followed you early on in my diagnosis. Don't you worry about the "haters", you have done MORE for the people that have followed you thru this journey! I have come to find out that a lot of the haters are people that say, "I'm sicker than you" and it becomes a "competition" for them. KEEP UP THE GREAT WORK!! PS...I think it is AWESOME that you are going to drop Episode 1 of your Podcast on August 1, the same month that is Gastroparesis Awareness Month!!
Thank you, Therese! I truly appreciate your support and kind words ❤️ ❤️❤️
Thanks for the update, Crystal. I've had gastroparesis for about 10 years and i followed you early on, and appreciated your positiveness in spite of gp being such a challenge. I'm sorry you've gotten some negative comments, but since it's such a variable disease I'm sure there are folks out there that are frustrated when they have a really severe case with all the effects. My 4 hour eat study put me in a severe category, so I'm really relieved my symptoms are not always that bad. My cousin tested more mild, but has a lot of pain. One thing I've noticed is that food additives like thickeners and natural fibers are horrible for my symptoms. I avoid inulin (read, not insulin!), carragenin, chickory root, etc. After a lot of trial and error, I've found the no-no foods I can't eat, and learned that i can have a tiny bit more fat, but absolutely needed to stick with very low fiber. It's been a journey for sure, but day to day I can eat a little less carefully, and use the step up/step down diet when I sense trouble coming. I'll look forward to your new endeavors🙂
Thanks, Kate! So true. I have so much compassion for those who are really struggling right now; I remember what that feels like. The variability of the condition can be encouraging (my emptying has been everything from severely delayed to normal in the past 20 years) but also so frustrating. I'm so glad you've found what works for you and things are getting easier!! Thanks for your continued support. ❤️
Thanks for everything u do Crystal!
Thank you for following along!
Thank you Crystal for your work, it has helped me a lot :-). I wonder, in those two years where your gastric emptying tests came back normal, did you feel better? I did a gastric emptying test recently and it came back normal, but my symptoms are still there. Very frustrating.
So glad you've found my work helpful! Yes, my symptoms improved significantly (though not completely) when my gastric emptying normalized. What you're experiencing, though, isn't uncommon and I think it's a source of frustration for a lot of people. Gastric emptying time is the best diagnostic measurement we have for gastroparesis but it's pretty well known among clinicians that the degree of delay in gastric emptying doesn't always correspond to the degree of symptoms experienced. What's more, it's very possible to have gastroparesis-like symptoms even without a delay in gastric emptying, this is usually called functional dyspepsia. It's likely the symptoms that so many of us experience aren't solely related to the delay in gastric emptying -- we just know what they are related to, yet, so that's what we can continue to test and document. Most good GI docs will treat based on symptoms not just testing, so I hope you're still receiving the support that you need. And the great thing about the comprehensive management plan that I share is that it's equally appropriate and helpful for gastroparesis as it is functional dyspepsia. Hope that's helpful! Sending you lots of good wishes!
My last test, started off great, halfway through, it stopped moving. I was wondering if a complete colon cleanse would work.
You might want to talk with your doctor about a full GI transit test if you've not had one, which looks at the transit time of the small intestine and the colon, in addition to the stomach. That can help identify where the delay(s) are present and guide treatment options.
@@csaltrelli Thanks a lot. Yes, your content and your personality has been helping me a lot :-). Well it is strange because over the years, since 2007, I have had 3 gastric emptying tests that showed severe gastroparesis. And then one that showed that it was much better and the last one showed no delay at all. But I am still extremely bloated and uncomfortable. At the moment I have no treatment for that but I will see a new GI doctor in a few months... Very frustrating indeed to not know what happens in the body. The diagnosis functional dyspepsia means "we don't know what is going on" :-(.
@@csaltrelli good tip, no doctor ever offered me this test!
THANK YOU CRYSTAL!!!!!!!
You're the best ❤️
I was great just like you for a while. at least a year. then BAM, I turned 43 1/2 and that pre menopause symptoms started. It through me into the worst flair i have had since diagnosis in 2017. I am now 44 as of June and still struggling.
I'm sorry to hear you're dealing with increased symptoms, Quinn. I hope that you're able to find some relief soon. I think what feels so reassuring to me at this point, especially like you say at an age when hormones are definitely changing and already seeming to have an effect, is that I'm just not afraid of my experience anymore, whatever that might be. I feel like I've been through it all and here I am 🙈. I really hope you feel better soon! I'll be sending good thoughts your way ❤️
Crystal, you saved my life all of those years ago with by your l and I, too, and thriving with Gastroparesis. I still have it, but symptoms are manageable and like you, my life is fulfilling. You look wonderful, by the way!
Sending so much love and thank you for all you do for us❤. 21:04
❤️❤️❤️
Crystal, please can you look into gastric alimetry test. I wanted your thoughts. How are you treating the acid reflux
Interesting! I hadn't heard of that before. I'll have to do a little more research.
As far as reflux, my testing has shown that I don't have a lot of actual acid reflux. I no longer have a gallbladder, so for me, it's more bile and non-acid reflux. So I don't take PPIs or other acid blockers, but I do use a couple of supplements that have been helpful. I talk about them in this video: th-cam.com/video/D7-lmFDOUB0/w-d-xo.html
For me, a lot of walking and trying to avoid bloating/distention as much as possible seems to be really helpful, as well.
@@csaltrellithank you for your quick response. Yes please, it would be good to have your thoughts on the gastric alimtery test. Non acid reflux? Is this also known as NERD? How is this diagnosed?
My bloating and distension is very painful. I don't know what to do.
Hi Crystal, glad to hear that you are doing so well. I wondered if in your GP journey if you've struggled with SIBO as so many if us do. If so, what helped you? It is chronic for me as I am tube fed and my stomach, small intestine and colon are all severely impacted with GP. I am waiting to find out if I am a candidatefor surgery as I do not qualify for the stimulator, botox or gpoem and none of the meds or supplements have helped. I am 5'8" and 99 lbs. I feel funny considering surgery when SIBO so negatively impacts my small intestinal motility. But my docs don't see any point in treatment for SIBO. They tell me it will just come back because of GP. I just wondered if you had any thoughts on this. Thanks for all of your advocacy for our community!
Hi, there! I did have SIBO and was initially treated with antibiotics, which provided some relief. Later it was retreated by a naturopath with a variety of supplements but that made my symptoms worse and I wasn't able to follow through. I do still experience bloating and distention but haven't been re-tested in a long time. Reducing certain FODMAPs has helped me somewhat.
I'm sorry that you haven't found anything helpful for you yet. I think I would ask more questions of the doctors regarding the choice to not treat the SIBO. I would want to know the downside of treatment, especially in the context of weight loss and suboptimal nutrition, aside from it coming back. Treating the SIBO could help restore some nutritional stability and alleviate at least some of your symptoms, even if it's intermittent or temporary. I'm not a doctor, of course, that's just my opinion and some food for thought.
I hope that you're able to find some relief soon! I'll be sending lots of good thoughts your way ❤️
Hello, I struggled with gastroparesis and Sibo. I did neyomcin and xifaxan off and on for about a year combined with hyperbaric oxygen to help heal my gut from the inside . I also did a colonic cleanse. Hyperbaric along with the antibiotics worked well for me, I heard my stomach growl for the first time in years after my first treatment. Also check your hormones, for me it was adrenal insufficiency and hypothyroidism which are important for digestion . I'm doing well now . Hope this helps
I’m so happy to hear you’re doing well! Thank you for sharing what has worked for you. ❤️
@@ElaneLane-j9i thank you for sharing!
@@csaltrelli Thank you Crystal, I agree with you about treating the SIBO even if for temporary relief and weight gain. Just need a different doctor I guess. I tried the herbals too and had the same experience you did, symptoms got much worse so I couldn't do that. Low FODMAP didn't help. It's frustrating too because all of the 2.0 tube feed formulas are loaded with corn syrup and Kate's Farm and Compleat are loaded with high FODMAP ingredients. The only tube feed option for SIBO is Elemental which is too low calorie for me and makes constipation much worse. I'm going to contact Abbott and Nestle and Kate's and ask for them to consider a higher calorie low fodmap feed. If that existed, it could keep me off of TPN. Thanks for sharing your insights!
Did any natural prokinetics ever work for you - ginger, artichoke etc? Also, was the abdominal massages you used to receive due to ur EDS able to be done at home? I’m curious if I could try something similar on myself.
I've tried all kinds of herbal things over the years and ginger has been the one that I continue to use, more for the anti-nausea properties than as a prokinetic, though. I have a post about it here: www.livingwellwithgastroparesis.com/blog/gastroparesis-ginger?rq=ginger
Iberogast was also helpful to me, more as a prokinetic: www.livingwellwithgastroparesis.com/blog/iberogast-for-dyspepsia-gp-ibs?rq=iberogast
As far as the abdominal work, I don't think I would do it myself unless instructed by a practitioner. I've had a lot of abdominal work that has made my symptoms significantly worse and I wouldn't want to do that to myself!
@@csaltrelli thank you!! Do you still go for those massages that helped? Just found out I have EDS, so looking for treatments
I don't because my practitioner retired and I haven't found anyone else who does the same kind of bodywork. Fortunately, my EDS symptoms have been much less bothersome over the last couple of years, I think largely related to a reduction in mind-body stress (the pandemic was really hard for me).
I was wondering what happened with you. I can't find any new updates with gastroparesis. Mine has been over 10 years, what works with you on bowels movements. The Tea, smooth move works the best, but I only use it every month or so. I would like to see how people does it 24 hours a day. Glad you are doing better
Hi, Juanita! I used to have colonic inertia, which was very difficult to manage without stimulant laxatives, but I have more alternating IBS type symptoms now. I found that reducing my consumption of shakes and bars with protein powder helped quite a bit with regular bowel movements, as has eating a little bit higher fiber and fat than I did in the past. My bowel symptoms seem to vary with my hormonal cycle, so I'm more cognizant of that during certain times of the month and try to avoid foods that exacerbate constipation, make sure I'm drinking enough water, and getting regular daily physical exercise. I do have an old video on constipation, which may be helpful if you haven't seen it before: th-cam.com/video/c322eoNk8G4/w-d-xo.html
Have you tried betaine hcl?
Yes, it's not something that worked well for me but it is helpful for some people.
What does small meals mean ?
I’m also stuck on how far to space my meals
This video might be helpful for you: th-cam.com/video/bJg-6NiUQGU/w-d-xo.html
As a general guideline, about 1-1/2 cups of food is a good starting point for small meals. Many people find eating every 2 to 3 hours works well for them, although some people do better with slightly smaller meals less frequently (4 meals a day rather than 6, for example). There's a lot of experimentation involved to really find what works best for each individual but the video above goes through 10 guidelines that will help you with that.
You might also want to download my Quick Start Guide to GP Management is you're new to the condition and trying to figure out how to best manage symptoms: www.livingwellwithgastroparesis.com/quick-start-guide-to-gastroparesis-management
Hope that helps!
@@csaltrelli thank you 🙏🏽
Would you mind doing a live video on what you eat in a day?
I was assessed in June and was told in the medical report that I am fit to return to work and that I am exaggerating my symptoms. I am struggling and will be appealing
Is anyone vegan and trying to manage gastroparesis?
There are people who follow a vegan gastroparesis-friendly diet but in that case, I really recommend you work with a nutritionist who can be sure you're getting all necessary nutrients.
This post might be somewhat helpful, though it's not specific to following a vegan diet: www.livingwellwithgastroparesis.com/blog/faq-how-do-i-manage-multiple-dietary-requirements
I've had two normal stomach emptying. One following botox injections but still had the symptoms. I also had gastric alimetry test which is a tool by team in. New Zealand but again same symptoms. Have you come across gastric alimtery test?