Is Gastroparesis a progressive disease?

I've only recently been active on this forum but I've been apart of others over the years.
Back in 2007 I was diagnosed with GP and I'm curious as to whether or not its a progressive disease. After reading about people's experiences with it I'm beginning to think that it is. I certainly go through peaks and troughs with how I'm feeling and right now I'm worse than I've been in years. Am I getting worse or is this just an unusually bad flare up? I'm just not sure anymore.
Most of the GI doctors I've talked to have skirted the issue as there isn't much known about the disease in general (e/g what the actual underlying cause is -- there are a lot of different theories but no real definitive answers).

This latest bout of pain was caused by Target brand salsa. I'm not sure what was in it or what triggered this flare up but it was pretty bad. It's subsided some but ever since I've had waves of nausea hit me when I'm 1) hungry and 2) digesting food about an hour after eating. My tolerances for food in general has been diminished as well. It actually has me a little worried since I'm consuming far less calories than I normally can (which is still below what I should likely be consuming). Any advice/insight would be much appreciated here.

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This has come up before, and I think the answer is they don't know. It does seem to be for some. Others have had it for years and it remains the same. It is inconsistent as in a food you can eat one day might be bad another day and that can be frustrating. There are so many unknowns about this condition.

I have had it for six years and now that I have meds in place that allow me to eat it has remained pretty much the same. If I go off the low fat/low fiber/low volume protocol I will get a flare, but with the meds I have for a flare those pretty much resolve in a day and I no longer have to go to the ER.

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Hi Primarilymike09,
To answer your question, my personal theory about GP being a progressive disease would be Yes. Do I think it has to get worse, NO. But, a person needs to know how to help themself to keep their stomach and intestines healthy. This all starts with proper diet based on what is causing your symptoms.

First question I have is did you ever have the gastric emptying test which is a 4 hour test done through nuclear medicine? Or, did you have an endoscopy where they found undigested food left in your stomach after fasting overnight before the test? Just checking because I know I was told by 2 different pediatricians that my daughter had Gastric delay / gastroparesis and then when we had her gastric emptying test, her stomach was emptying just fine. Thus, if you were just told this without proper testing, I would make sure to have this done so you know which dietary plan to follow.

Then, if you did get a confirmed diagnosis based on testing, did they look into what is causing it? Diabetes is the #1 cause, problems with thyroid and hormone levels, sclederma, idiopathic (unknown cause but usually starts after a virus). If you have a "confirmed diagnosis" of GP, I would recommend Crystal Saltrelli's website to follow. She has GP herself and she has a nutrition background. She also has a blog you can go to. One of the things she has recently been talking about is FODMAP's and SIBO and it's possible correlation to GP. http://www.youtube.com/watch?v=bt7SxeNIHuQ

FODMAPs are food groups that can be easily fermented in the intestines for people who have GI issues (malabsorption problems). Then, SIBO is small intestine bacterial overgrowth. One of the biggest culrpits under FODMAP's is fructose malabsorption.

On another note, which type of Target salsa did you eat?? Was it the peach/mango, bean and corn salsa, etc. Take a good look at the the ingredient label and look at the sugar/carb values. Look at the how much sugar is in it and what types of sugars and sugar alcohols (ingredients ending in "tol") Peaches and mango's are both naturally high in sorbitol/fructose. Then, if a bunch of extra added sugars are added on top of this, especially HFCS, honey, agave syrup, or fruit juice concentrates it is increasing the fructose load even more. Then, you add the tomatoes in there, which are ok if eaten in the whole food state, but once pureed or smashed up, the fructose load goes up even higher. Thus, It's a jar of digestive distress waiting to ferment in a person's intestines. Now, you can make your own salsa at home with plain table sugar, and you might be ok eating salsa in small amounts.

Here is an excellent website on FODMAPs and it is created by a dietician who received her training in FODMAO's from Monash
University out of Australia. They are the leaders in this and have their own lab for testing foods. Kate Scarlata trains other dietician's in this. http://blog.katescarlata.com/fodmaps-basics/fodmaps-checklist/

My personal theory is that our food system has become so manipulated with, in regards to #1 sugars and #2 manmade added fibers that are added to the foods, that people who are predispositioned to digestive illnesses are having it much worse these days because a person can not tell what is really added to their foods. Best advice is make your own foods at home where you can control what is put in it, and then stick to whole food sources. I hope some of this helps and gives you some hope. I know just after learning more about FODMOPs I felt really empowered in managing my own family's GI issues.

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Dkaj,

I had a nuclear medicine study where I ate an isotope laced batch of eggs. Xrays were then taken of my stomach over the course of a few hours. The odd thing was that I did in fact have an SIBO when they did the study which I believe compromised it. After becoming more educated about intestinal disease I really don't think I can say with certainty that I have GP. Symptomatically its very consistent with GP but really nearly all intestinal diseases are.

I honestly can't remember what kind of salsa it was but I'll pay close attention to the labels from now on. I think it was a medium spicy blend which has never bothered me before (I've maintained a tolerance of spice till recently). This year I've had to cut out a lot of food that I used to be fine with -- this is what has led me to ask about whether or not this is a progressive condition. This is also the second year I haven't had access to Zelnorm. I really really miss that heart attack inducing drug and there is nothing on the horizon that I've found to replace it with. I did read about a stem cell study that looks promising. We might all be cured within the next ten years. I would literally sell my house if it meant I could feel normal again.

I'll have to look into FODMOP more. I've tried it before but I felt it was really hard to maintain. It really diminishes your food options :(
No pain no gain emiright?

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Like everyone else, I don't know whether GP is progressive or not, but suspect that it is, although in my case it has been only slowly progressing. Three years ago one 40mg Nexium was enough to control my GERD. One year ago 80mg Nexium was enough. Three months ago, we added 150mg Zantac at night, and I'm still consuming Tums like they're candy. On the other hand, when I had the Botox injection done three weeks ago, my esophogeal erosions were less than on my previous EGD two years ago, but there was more accumulated bile in my stomach. So who knows? I'm on a very restrictive diet -- low fat, low sugar, low fiber, low residue -- and it works out for me. Sure, there are things I'd love to eat that I can't, but I prefer the restrictions to the symptoms! I've been keeping a food diary for years now, and pretty much know what I'll react to. Sometimes I'll have the bloating and nausea unrelated to the food I eat (which right now is TPN and Boost, with a little bit of solids since the Botox), but that's my CIP at work rather than the GP. I know there are a lot of people on the site who can tolerate foods that I couldn't eat in a hundred years, but we are all different, and that is why I think keeping a food diary is vital. Flare ups can occur unrelated to intake, but most of the time it's something that you ate that caused the flare up. Without a food diary, it's hard to remember what you've eaten in the last day or so. I'm beginning to sound like a nag on this subject. I don't mean to be; it's just that it's been such a helpful tool for me in controlling my GP symptoms. Love and Light, Candace

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Hi Mike,
You can do FODMAP's. I have a 7 year old, and if I can do this with her for as picky of an eater as she is, you can do it!! Plus, she doesn't tell me when the yummy foods bother her, because of course she wants them, so I'm playing a guessing game somewhat until she can no longer hide either the gas pains, the stomach bloating, regurgitation, constipation, etc. It's a matter of figuring out which groups of those foods cause you most problems. You may not need to eliminate all those food groups. I'm still playing around with some of it with my daughter. We have eliminated all of her symptoms, except the constipation. My problem now is getting fiber in her, as I know she has some problems with wheat, but need to test at what level. Don't want to do this while she's still in school. We'll mess with the wheat and her poor tummy this summer so if it causes too much distress, at least she won't be missing school.
Oh, and I forgot to mention the onions and garlic (which are fructans and they have fructose and add to the fructose load) in the salsa. Kate Scarlata has alot of tricks you can do to still get the flavors in foods. Example is cook onions and garlic in olive oil. Then you discard the segments of the onions and garlic, but the flavors are still kept in the oil. You can Not do this with water though, it has to be oil, and she explains why. Also, there is an app for smart phones now that Monash University put out that you can have at your finger tips. This may not be all of what's causing your GI issues, but it could eliminate many. FODMAP's is an evolving area, so if you tried this a couple years ago, there is alot of new info out there. Kate's site is probably the best.

PS. I'm not familiar with the med you spoke of. Sorry, can not help you there but best of luck to you and hoping for happier tummy days.

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Hehe, no worries on the Zelnorm. It's not worth becoming familiar with as the FDA has banned it in the USA - as far as I know Mexico is the only country left that you can still get it from (Europe and Asia have both banned it too - it likely wasn't a great long term solution for anyone).

I'll definitely be giving the FODMOP method another try. I'll be curious to see how under control I can get the bloating.

For constipation I've started taking REZVERA which is an OTC supplement. I've had mild/moderate success with it. More than anything its a glorified digestive enzyme that does seem to help with constipation. You wont see immediate results but after a few weeks of taking it with meals there should be some improvement with the bowls. It might be something you'd want to look into for your daughter. It's certainly helped me more than anything else I've tried.

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I have had GP for 4 years that I now of. I would say yes either that or there our flares. Good luck, Cary :)

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MY 25 TR OLD SON DEVELOPED GASTROPARISES AFTER A TRANSPLANT WHEN THEY REMOVED SOME URGAN DANAGE WAS ALSO DONE TO HIS VAGUS NERVE VERY VERY ILL.

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Check out this link for clarity about this......


http://patients.gi.org/topics/gastroparesis/

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in nov some dr at a convention came out with proof gp is deadly theve proven eight people have die from in an not side effects it does get worse

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I believe that the disease is not only progressive but disabling to most that have it. I also can not believe that it is un curable that drives me nuts so I to believe that it is deadly. I just lost a really good friend from my Gastroparesis support group due to GP and another friend a few months ago. I am tired of loosing my friends to this mysterious disease that doctors seem afraid to both diagnose and treat. If it wasn't for Cedars Sinai in Los Angeles, I would most likely be dead at this point. I am 5'4 and was 88 lbs less then six months ago. I had to go on TPN so that I could gain weight and nutrients as my hair was falling out in clumps, not to mention my nails were ridged and clear. I truly believe without the TPN I would be dead or dying in a hospital right now. I suffer from malabsorbtion as well. This is such a painful disease. I'm sorry for those that have it. I just want to mention there are a few groups on FB that are support groups for Gastroparesis if anyone would like to join them please add me as a friend and I can add you there dawn.lamotte@gmail.com should allow my name and profile to come up. I hope everyone is feeling better soon or at least almost pain free.

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This is the link to the low FODMAP diet app - it makes following the diet a lot easier:

https://itunes.apple.com/au/app/monash-university-low-fodmap/id586149216?mt =8

If you get the breath tests for malabsorption of the FODMAPs that are not malabsorbed in everyone (lactose, fructose, sorbitol) and these come back negative, then you won't have to eliminate them and your dietary choices will be broader. (Although be sure to get a control test done before testing these substances so you can see if your gastric emptying is too slow for the test substance to reach the intestinal substrate during the testing window, which would give you a negative result due to the substance not reaching the appropriate part in time, rather than because you don't malabsorb it.)

This explains the type of breath testing you want to get (ensure you are tested for both hydrogen and methane, as some people only produce the latter):

http://www.foodintolerancemanagementplan.com.au/documents/Breath%20Hydrogen %20Tests.pdf

Hope this makes getting started easier...

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Hi there, Mike,

Sorry to hear you're feeling worse. I almost hate to tell you that I'm doing better than ever, but that's only because I've finally found a balance between supplements and diet that works for me. Of course Ive had gp since 2004, so I've had eight years of learning "how not to do it," but things are going well right now.

Note that "doing better than ever" still includes nearly daily bouts of pain, so bad that I can't walk at times, and nausea, and all the symptoms that typically go with gp, and that's of course because I still have it. Im just healthy and victorious in spite of it, ironic as that sounds.

Cath

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Hi Mike,
Thanks for the info about the revzera. I will definitely keep that in mind. I have a digestive enzyme at home for my daughter through enzymedica. It's called digest spectrum. It's been sitting here, because I have been nervous about giving it to her since she is so young. I'm always so nervous about giving her any things just because I don't know how it's going to make her feel and she doesn't know how to describe always what's going on with her stomach. We had been doing mirilax with my daughter daily for years. She only needed about 1 to 2 tsp a day to keep her going very regulary and of the right consistency. I took her off the mirilax though once we started getting a handle on the FODMAP's diet, and we got all of her upper GI issues resolved, just because I wanted to see how she did without any constipation meds. We've had some good weeks, and then some bad, and if we start getting to day 4 or 5 without a good BM, then I give her milk of magnesia. I was doing this so I could assess if cutting out sugar alcohols, HFCS, higher fructose in general, was enough and then avoiding whole grains and wheat for now. Well, this still isn't enough to eliminate our last lingering problem of the constipation. Thus, I'm thinking we probably need to do the breath test for the SIBO as I bet she is a methane gas producer. I just want to get to the underlying cause and see if I can turn her stomach around while she is still young.
Unfortunately, we are also going through some other health issues in the family right now with my mom as she has a very rare type of cancer, so I keep bouncing back and forth between my mom and my daughter's issues. I think I just need to get the breath testing done, so I can determine if she does have the SIBO. I'm just hoping the hospital who does the testing in our state has gotten up to date on this issue and does the testing properly and then has a dietician who can is trained on all of this. We've been there before, and I was not impressed with them at all. Long story, and it gives me a headache to even think about it......

Oh, and here is another link to go with all the other helpful links others have passed on. This is the website of a natural path doctor out of Portland, Oregon. Dr. Allison Siebecker is currently writing a book on SIBO and how it can gut bacterial imbalances can contribute to many GI issues to include IBS, GP, IBD, celiac, autoimmune disorders, etc. She had IBS herself with many debilitating symptoms, so she knows first hand how this can totally limit a person's work, social, and daily life. http://www.siboinfo.com/ On her website, she has many free audio video's you can listen to and she explains GI disorders and SIBO better than any other presentations I've ever listened to. She talks about the migrating motor complex and how people with IBS-C have a slower one. She talks about FODMAPs, the Specific Carbohydrate Diet by Elaine Gottshall, SIBO and how people can have it re-ocurr if the underlying problems that is causing it isn't resolved by using pro-kinetics after it is eradicated. She does say that people who have IBS-C are tougher cases. Alot of her info references Dr Mark Pimental who is the head of the GI Motility Program and Cedars Sinai Medical Center. Here's his link to his book: http://www.anewibssolution.com/

One thing that alot of these different doctors who are researching malabsorption issues talk about is how patients can become deficient in vit B12, D, and I think there may be others. This is especially true for those who have to take PPI's and alot of anti acids for severe reflux problems. If you haven't had these checked, you may want to ask your doctor about it if you feel they are open to patient requests for testing. When people have malabsorption issues, they can become deficient in these. And, many times taking the OTC capsules or pills aren't enough, and some may need to take the B-12 shots to get their levels up. Just some food for thought.... Of course, I'm not a doctor, it's just what I've been reading.... but at least you're getting quite a few resources from people to make your own informed decisions. Best wishes to you and all those suffering from the various GI disorders. May we all learn from each other and hope the doctors keep plugging away to continue to find ways to help, and then educate other doc's on the research they have done.

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I'm in awe of many of you with more complicated gastro problems, symptoms, than I'm currently experiencing. Not happy to be struggling to get in enough calories a day, including nutritional drinks, but gp diet is manageable. Off Zofran and main symptoms are little appetite and full feeling. If gp turns out to be progressive, I hope I can muster the courage I see on many of these posts. Bless you all!

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Hi Dkaj,

The dietitian whose research discovered FODMAPs has a practice that provides Skype consultations:

http://shepherdworks.com.au/services/book-an-appointment

There are probably other registered dietitians specialising in GI disorders who provide Skype consultations, too, so if you want to consult someone in your country perhaps you could look up profiles here and send queries about Skype consults to whoever you think would be best:

http://www.eatright.org/programs/rdfinder/default.aspx

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Cath,

I'm really glad to hear that you're doing "better than ever!" I actually went on a bit of an upswing last week but then last night I ate some Salmon that didn't agree with me, so I'm back to square one. Oh well, I'll just keep doing what I'm doing I guess :)
Thanks again for hosting that soft foods website. I consult it nearly daily or meal ideas :D

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Thanks NikaOz for the different site info. I did do a search for dieticians in our area. I did talk to one who is familiar with FODMAP's but hasn't had any formal training. She was familiar with Kate Scalarta, RD though and said she was trying to get her to come and train other dieticians in our area at a conference. She seemed a little taken back though when I asked if she had formalized training in this and with small intestine bacterial overgrowth. I'm just at the point though that I'm tired of paying out money to doctors who don't understand the dietary side of issues, and I'm not willing to fork out more money to a dietician who doesn't have the specific training to be able to help. Actually, this dietician made it seem like she was going to have to extra work gathering information to be able to help with the SIBO part of it, almost like we were going to be "extra work". We have the FODMAPs part of it mostly figured out, it's the lingering constipation and possibly SIBO that we need to get turned around.

Ok, I'm going to vent here, but if one is going to hire a carpenter, electrician, or any other professional it is understood that if they don't have the training or experience for the job you are needing done, a person wouldn't hire them or pay them to do a job they have never had training in or experience doing before. That's the way I have come to look at all of this and I refuse to waste my time and money any more on health professionals who can't provide the services I need. It was almost like she was appauled that I asked if she training in it. Then she said I would need a doctor's order / prescription in order to provide medical nutrition therapy with a diagnosis. Does this sound like standard practice?? Just curious if others needed a doctor's order to provide medical nutrition therapy.

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I'm so glad you've found some recipe ideas, Mike! Wait til you see the brownies! YUM. I am tutoring students all afternoon, but I'll have it up within the next 24 hrs fore shore.

C:

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Dkaj, that was totally my experience, too! If I break a leg, I'm so going to the doctor. For anything that has to do with the immune system/nutrition, nope, nada, no way. Been there, done that, got sicker.

C:

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