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Gastroparesis
Just diagnosed with this. Normal emptying of half on the test is 90 mn or less, mine came back at 267 mn.
I am not diabetic, I don't know why I have this. I have not thrown up but I spend days where I am retching and gagging. I get extremely bloated and nauseated daily. Going to Mayo Clinic May 18th since I live in Minnesota. I am scared of ending up having to be on feeding tubes. :( Does anyone have this? Is it progressive? I am looking into alternative treatments since it seems that many have found some relief going this route. Anyone here doing the same and if so, what are you doing alternatively? Thanks.
I am not diabetic, I don't know why I have this. I have not thrown up but I spend days where I am retching and gagging. I get extremely bloated and nauseated daily. Going to Mayo Clinic May 18th since I live in Minnesota. I am scared of ending up having to be on feeding tubes. :( Does anyone have this? Is it progressive? I am looking into alternative treatments since it seems that many have found some relief going this route. Anyone here doing the same and if so, what are you doing alternatively? Thanks.
Thanks CalGal. Is there a specific diet to follow for this? I mean, I know what to avoid, but is there a book on this that can list foods to stay away from, foods you can eat, that can give better tips on looking for hidden ingredients to avoid? I am the type of person that is so much better "following" something to a tee, so if I can get ahold of the exact diet in book form, that would be the best. I am so glad your husband is feeling good!
Michelle, my husband avoids all forms of gluten - wheat, rye, barley, oats and malt products. And because he's cross-reactive to casein, the major protien in dairy, he's also dairy-free. It's made a world of difference in his health and his mental state.
gnorb, thanks so much for your follow up. :-) Do you have any suggestions on how I can find a diet that is resistant to both candida and gluten? Should I go this way right now before consulting a naturopath or just go with the very bland suggestions you talked about with the egg whites and cooked veggies, then get to Mayo, then get with a naturopath to help me with all of this? I'm on my way to checking on enterolab!
I am very intrigued about your comments regarding high protein diets and gastroparesis. That is extremely interesting. So you think that maybe my being on a low carb/high protein diet somehow contributed to gastroparesis aside from having issues digesting sugars/carbs?
CalGal, thanks! The other thing I have had since birth is IgA deficiency which has caused me to have more gut infections in the past and just a very sensitive gut in general. I have literally zero IgA which is an immunoglobulin. I know this has to play a part in my situation. It's a genetic type of thing I guess since my niece is also with IgA deficiency. So yes, I have had an upper scope and was tested for celiac via biopsy about 6 years ago which was negative. However, I remember thinking that it didn't matter because it seemed like I followed the profile of someone who was either with celiac (which, btw, is VERY common in IgA def patients) and/or with major sensitivities. Does your husband follow a specific diet in particular?
verared, thanks! It is nice to know that stomach removal is still in the cards if you suffer profusely from this. I know surgery is never easy and the removal of the stomach can't be a walk in the park necessarily but I guess the way to look at it is stomach cancer patients go there, patients with severe peptic and gastric ulcers go there or even a partial surgery, so gastroparesis can be just as serious and when it gets to a certain point, removal of the stomach can be a welcomed option. I just like knowing that this is always an option. Thanks.
Mommyto2girls711, hi and thanks. How are you doing with yours? Extreme symptoms? What are you doing right now for it? Yes this is certainly a frustrating diagnosis and eye opener. I guess it can be looked at as a blessing in that you are now being forced into looking at ways to change your lifestyle and get healthy not just to feel a little better, but to really give your body a makeover of sort because something very significant had to have happened to get us to where we are now, and as a result it is up to us to try everything to figure out the cause and solution to ease the symptoms and even hopefully cure them.
I am very intrigued about your comments regarding high protein diets and gastroparesis. That is extremely interesting. So you think that maybe my being on a low carb/high protein diet somehow contributed to gastroparesis aside from having issues digesting sugars/carbs?
CalGal, thanks! The other thing I have had since birth is IgA deficiency which has caused me to have more gut infections in the past and just a very sensitive gut in general. I have literally zero IgA which is an immunoglobulin. I know this has to play a part in my situation. It's a genetic type of thing I guess since my niece is also with IgA deficiency. So yes, I have had an upper scope and was tested for celiac via biopsy about 6 years ago which was negative. However, I remember thinking that it didn't matter because it seemed like I followed the profile of someone who was either with celiac (which, btw, is VERY common in IgA def patients) and/or with major sensitivities. Does your husband follow a specific diet in particular?
verared, thanks! It is nice to know that stomach removal is still in the cards if you suffer profusely from this. I know surgery is never easy and the removal of the stomach can't be a walk in the park necessarily but I guess the way to look at it is stomach cancer patients go there, patients with severe peptic and gastric ulcers go there or even a partial surgery, so gastroparesis can be just as serious and when it gets to a certain point, removal of the stomach can be a welcomed option. I just like knowing that this is always an option. Thanks.
Mommyto2girls711, hi and thanks. How are you doing with yours? Extreme symptoms? What are you doing right now for it? Yes this is certainly a frustrating diagnosis and eye opener. I guess it can be looked at as a blessing in that you are now being forced into looking at ways to change your lifestyle and get healthy not just to feel a little better, but to really give your body a makeover of sort because something very significant had to have happened to get us to where we are now, and as a result it is up to us to try everything to figure out the cause and solution to ease the symptoms and even hopefully cure them.
I was so glad to read your post! I am newly diagnosed, too, and extremely frustrated and down. Just reading everyone's responses has really helped me today. It gives me encouragement that things can get better. You are so lucky that you get to go to Mayo. I live too far away and it just isn't an option. Please keep us posted on how you are doing and what tests you take. You will be in my thoughts and prayers!
There is a great group on the web of gastroparesis supporters/friends/relatives. We have found this very helpful, and as a matter of fact that is where we found out about the Dr. our daughter went too. There are some risks to having your stomach removed but less than the gastric pacemaker from our research. You may find that you can keep it controlled for some time with diet and medication. Hers progressed rather quickly, though she has suffered for years -just did not have a diagnosis.
Unfortunately, as you have heard, there is no magic formula that fits everyone with this disease. Keep the faith!
Unfortunately, as you have heard, there is no magic formula that fits everyone with this disease. Keep the faith!
Michelle, if you have problems with white flour products, and other foods, go back to the diet. Even if you've not been diagnosed with celiac issues, or you've tested negative for gluten/wheat allergies or intolerance it's very possible you could still have a problem with wheat, rye, barley, oats and malt. Many, many people test negative with the standard medical tests - including endoscopy - and those tests are incorrect. My husband didn't have gastroparesis, but food would end up sitting in his stomach for much longer than normal. Our internist said he couldn't possibly have celiac issues, but we found out later that he did.
I'm not saying that celiac issues are causing your gastroparesis, but judging my his reactions to foods (including sugar) and the change in his body since drastically changing his diet, if problems with the gliadin in wheat/rye/barley/oat/malt products is part of your problem, you should see changes in your system over a period of months.
I'm not saying that celiac issues are causing your gastroparesis, but judging my his reactions to foods (including sugar) and the change in his body since drastically changing his diet, if problems with the gliadin in wheat/rye/barley/oat/malt products is part of your problem, you should see changes in your system over a period of months.
Thank you for your note. Glad to be of help.
Regarding your diet, yeast overgrowth in your body (candida) CAN cause delayed gastric emptying. Forget gluten intolerance for a second, try finding out of this is indeed your problem. For the moment, since this is what you suspect, research and adhere to a candida diet and a gluten-free diet. (Note that food intolerances can lead to yeast overgrowth so it may be that one led to the other.) Work with a good naturopath on this, and if possible also a nutritionist familiar with these issues.
If you can, head down to EnteroLab.com and see about getting some of their tests. I think you'll find them of some use.
Observation has led me to believe there may be a link between high-protein diets and gastroparesis, seeing as many who end up with gastroparesis have practiced that diet (myself included). Correlation does not imply causation, however, so I can't say for certain.
As for foods, I recommend you stay away from the fatty foods for the moment. Stick with low-fat, easily digestible proteins like egg whites for now. Cheap and easy on your system, this may end up giving you the best bang for the buck. Regarding fiber, try to see how you do with vegetables. Best for the moment are boiled. Supplement this with something like Metamucil to get your fiber: just because your stomach is slow doesn't mean you need your colon to be also.
By the way, one of my favorite tools is the food/symptom diary. Keep a diary with very detailed notes about your food intake (including time and as much detail about the food as necessary) and any symptoms which arise. You may spot patterns there you may not have spotted before.
Good luck, and If I can be of any further help, please let me know.
Regarding your diet, yeast overgrowth in your body (candida) CAN cause delayed gastric emptying. Forget gluten intolerance for a second, try finding out of this is indeed your problem. For the moment, since this is what you suspect, research and adhere to a candida diet and a gluten-free diet. (Note that food intolerances can lead to yeast overgrowth so it may be that one led to the other.) Work with a good naturopath on this, and if possible also a nutritionist familiar with these issues.
If you can, head down to EnteroLab.com and see about getting some of their tests. I think you'll find them of some use.
Observation has led me to believe there may be a link between high-protein diets and gastroparesis, seeing as many who end up with gastroparesis have practiced that diet (myself included). Correlation does not imply causation, however, so I can't say for certain.
As for foods, I recommend you stay away from the fatty foods for the moment. Stick with low-fat, easily digestible proteins like egg whites for now. Cheap and easy on your system, this may end up giving you the best bang for the buck. Regarding fiber, try to see how you do with vegetables. Best for the moment are boiled. Supplement this with something like Metamucil to get your fiber: just because your stomach is slow doesn't mean you need your colon to be also.
By the way, one of my favorite tools is the food/symptom diary. Keep a diary with very detailed notes about your food intake (including time and as much detail about the food as necessary) and any symptoms which arise. You may spot patterns there you may not have spotted before.
Good luck, and If I can be of any further help, please let me know.
Wow, your post amazed me, I have tears in my eyes. Thanks so much for taking out the time to explain so much of this to me. I can't tell you how much I appreciate it. You put me at ease regarding the feeding tubes. You're so right about how I see it so much around the net because the ones that aren't on them won't broadcast that, only the ones that are will. Also, I read (if this is correct) that roughly only 5-15% need feeding tubes which means 85% do not ever need them. That stat is reassuring if it's true. You're also right about Mayo Clinic, thank God I get to go there. Everything you have responded to makes me feel so much better, thank you! The thing that you said about gastroparesis being a symptom, finding the cause is the key. You couldn't be more right on. Because the thing is... I know I have suffered forever with candida issues AND intolerance to white flour products and sugars. I firmly believe my cause is due to diet. In fact, I KNOW this. Not to mention how the mind can affect your physical body as well. But the diet is key here with me, I think, because two years ago I was on a low carb diet and I felt great on it. I lost tons of weight, I was finally at my high school athletic weight again when I played soccer and basketball, I was very fit and felt really good. But then I slacked off on the diet and I started having problems again, and eventually this diagnosis. I know for a fact that I feel better on a low sugar, low carb diet, which is why I am sort of confused now because the traditional gastroparesis diet says to NOT eat the fats and proteins that I believe I feel better on. So I'm not sure if I should still go low carb/low sugar and limit my consumption of certain things like red meat but still eat some eggs and stick to chicken breast for meats, doing so in all smaller portions, or what I should be doing. All I do know if if you handed me any white flour and I consumed it, my stomach will bloat out and I will feel sick, even pre gastroparesis diagnosis. So I think the key with me is diet. Of course Mayo will get down to if I have another medical problem that is obvious but I know diet plays a big part here. I won't stop until I get to the bottom of all of this and reclaim my health again, I know that much. And it helps loads talking to kind people like you. Thank you. I hope to continue the conversation. Thanks again,
Michelle
Michelle
Sorry to hear about the gastroparesis. Diagnosed with it myself about a year ago. Luckily, it was a borderline result (half digestion time was at 70 mins, mine came back at 80). I've done some research and here's a bit of info on the q's you asked:
1) Does anyone have this? Yes, though numbers are hard to come by. As far as percentages are concerned, 20%-30% of those who get it are diabetics, 30%-40% are related to some other condition (scleroderma, Parkinson's, ALS, Multiple Sclerosis, Addison's, etc), and 30-40% are idiopathic, depending on where you get your stats from.
2) Is it progressive? Maybe, although in most cases gastroparesis is a self-limiting condition. If it has an underlying cause, it must be addressed, however. In individuals who are otherwise healthy (ie, idiopathic cases), up to 30% are due to a post-viral illness. Those can be expected to make a full recovery somewhere between 6 months to 5 years.
3) Currently, my "alternative" treatment consists of Iberogast, a German manufactured herbal used for nausea, bloating, and dyspepsia. I have had some success with acupuncture, and plan on returning to that once I have my gallbladder, which has become troublesome and may be the cause of my problems, removed.
4) Can they take out the stomach? Yes. It's the cure of last resort, however. Before then other treatments, including gastric pacemakers, should be considered.
5) Are the feeding tubes uncommon? That depends on your doctor and you. If you don't want the tubes and feel there might be another answer out there, then explore it. Unfortunately, there are no percentages I've read on how many get G tubes or J tubes. The relative numbers, however, are fairly low, as most can handle the condition with lifestyle/diet changes (low fiber/low fat, mostly liquid meals) and medications. Never underestimate the power of exercise, meditation, and even hypnosis. There's evidence for the efficacy of each.
You probably "see" a lot of people with the tubes because their stories are the most striking. Those who don't have tubes don't go around saying "I don't have tubes!" (Though more than once I've gotten on my knees and thanked whatever diety may have been listening for not being on tubes myself.) They simply live their lives. In fact, I'm willing to bet that many people who have "GERD" are also gastroparesic to some level. Studies suggest the condition may be far more common than first thought: most simply aren't tested and are instead given a PPI long-term. In other words, don't worry too much about tubes just yet. If you've just been diagnosed you still have a long way to go before you get to that stage, and the Mayo clinic is one of the best in the world for this type of issue, so you're in luck.
It's scary, I know, but it's OK. You will adjust. You will survive (very, very, very rarely is gastroparesis life threatening). And guess what? You may even get better. Just one piece of advice: don't try to go at it alone. Friends--real live ones, not just people on the Internet--are an important part of the recovery process. Finally, don't underestimate the power of your own mind. Find yourself a group of people who are positive, who are go getters, who are out there making the world better, and join them. The best way to get hope is to get around people who have it.
One thing I've learned from personal experience: gastroparesis isn't a diagnosis, it's a symptom. Unfortunately, it's about as specific as a headache. Nerve issues, muscle issues, liver/digestion issues, gluten intolerance issues, allergy issues, fluoride... all have been associated with gastroparesis. It's up to you now to find the possible root cause. It might not be easy, and you may never find an answer, but try anyway. The only difference between those who succeed and those who fail is that the one who succeeded got up one more time more than they fell. And if you DO find an answer, then a heck of a find will it have been.
Good luck.
1) Does anyone have this? Yes, though numbers are hard to come by. As far as percentages are concerned, 20%-30% of those who get it are diabetics, 30%-40% are related to some other condition (scleroderma, Parkinson's, ALS, Multiple Sclerosis, Addison's, etc), and 30-40% are idiopathic, depending on where you get your stats from.
2) Is it progressive? Maybe, although in most cases gastroparesis is a self-limiting condition. If it has an underlying cause, it must be addressed, however. In individuals who are otherwise healthy (ie, idiopathic cases), up to 30% are due to a post-viral illness. Those can be expected to make a full recovery somewhere between 6 months to 5 years.
3) Currently, my "alternative" treatment consists of Iberogast, a German manufactured herbal used for nausea, bloating, and dyspepsia. I have had some success with acupuncture, and plan on returning to that once I have my gallbladder, which has become troublesome and may be the cause of my problems, removed.
4) Can they take out the stomach? Yes. It's the cure of last resort, however. Before then other treatments, including gastric pacemakers, should be considered.
5) Are the feeding tubes uncommon? That depends on your doctor and you. If you don't want the tubes and feel there might be another answer out there, then explore it. Unfortunately, there are no percentages I've read on how many get G tubes or J tubes. The relative numbers, however, are fairly low, as most can handle the condition with lifestyle/diet changes (low fiber/low fat, mostly liquid meals) and medications. Never underestimate the power of exercise, meditation, and even hypnosis. There's evidence for the efficacy of each.
You probably "see" a lot of people with the tubes because their stories are the most striking. Those who don't have tubes don't go around saying "I don't have tubes!" (Though more than once I've gotten on my knees and thanked whatever diety may have been listening for not being on tubes myself.) They simply live their lives. In fact, I'm willing to bet that many people who have "GERD" are also gastroparesic to some level. Studies suggest the condition may be far more common than first thought: most simply aren't tested and are instead given a PPI long-term. In other words, don't worry too much about tubes just yet. If you've just been diagnosed you still have a long way to go before you get to that stage, and the Mayo clinic is one of the best in the world for this type of issue, so you're in luck.
It's scary, I know, but it's OK. You will adjust. You will survive (very, very, very rarely is gastroparesis life threatening). And guess what? You may even get better. Just one piece of advice: don't try to go at it alone. Friends--real live ones, not just people on the Internet--are an important part of the recovery process. Finally, don't underestimate the power of your own mind. Find yourself a group of people who are positive, who are go getters, who are out there making the world better, and join them. The best way to get hope is to get around people who have it.
One thing I've learned from personal experience: gastroparesis isn't a diagnosis, it's a symptom. Unfortunately, it's about as specific as a headache. Nerve issues, muscle issues, liver/digestion issues, gluten intolerance issues, allergy issues, fluoride... all have been associated with gastroparesis. It's up to you now to find the possible root cause. It might not be easy, and you may never find an answer, but try anyway. The only difference between those who succeed and those who fail is that the one who succeeded got up one more time more than they fell. And if you DO find an answer, then a heck of a find will it have been.
Good luck.
Thank you so much for your post. Thank God your daughter is doing well. Is she eating normally again? Are there any drawbacks to having your stomach removed? Honestly, this is what I rather have done over being hooked up to feeding tubes. I don't see that as a way of living, I don't want to go there. I feel like if I can control this with diet, cool, if not, I rather have my stomach removed.
My daughter was diagnosed with gastroparesis about 3 years ago. It has been a HORRIBLE struggle. Medication theat didn't work, botox injections into the pyloric valve that worked for awhile until scar tissue became a problem. We found a DR. in San Antonio who is amazing and the end of Feb we did a gastric bypass sugery and removed her stomach. He felt there was a greater risk to leave it there since it did not work well at all. His name is Terive Duperior. She is doing very well, and very possibly may be able to resume a normal life that she hasn't seen in years. Good luck - my prayers are with you.
No one has commented yet. Anyone that has info on this condition, I would greatly appreciate it. Man I am terrified of having to go on feeding tubes. Is this uncommon to have to do? That's the part that scares me, not the symptoms or even having this, I just don't want it to get to the pt of where I am housebound and I cannot live a normal life. What is the percentage of people who are on feeding tubes for this? Everyone I read says that MOST control without yet I see so many people on them, it's depressing me. :(
Also, this might be a lame question but can't they just take out your stomach to cure this problem? I don't get it, people with ulcerative colitis, they say a "cure" is to remove the colon completely. Why can't they remove the stomach for a cure for gastroparesis? Thanks.
Also, this might be a lame question but can't they just take out your stomach to cure this problem? I don't get it, people with ulcerative colitis, they say a "cure" is to remove the colon completely. Why can't they remove the stomach for a cure for gastroparesis? Thanks.
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