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can you have gastroparesis...even if the emptying scan is negative?

DO your guts need to be acting up the day you have the test in order to get an accurate diagnosis?

jsut curious.. thanks :huh:

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Hey Dizzygirl-

The short answer is "YES" If you are showing symptoms of gastroparesis and had a normal gastric emptying scan...it is definately NOT definitive. A GES is simply a snapshot of what your tum is doing at that particular moment in time. The test is actually quite unstandardized as the meal. level of activity, positioning differs at each hospital.

My son was sooo nauseous during his GES that he couldn't even eat one bite of his radioactive muffin. He swallowed a few sips of radioactive juice and his tum supposedly emptied normally. At that point his pediatic GI suggested mental illness as the cause for his inability to eat@#$*&! We trotted over to Johns Hopkins where his docs discovered (via antroduodenal manometry) that his small intestine had very delayed motilty. His food actually moved in a retrograde fashion (the wrong way) for up to 3 hours at a time. No wonder he was feeling nauseous. So even if the tum empties "normally" there may be a dam further downstream causing the same exact symptoms and requiring the same exact treatment as gastroparesis.

Try a prokinetic, Dizz. If it helps, voila- you've figured things out. Avoid reglan. Consider a tiny pediatric dose of erthromycin (1/4 to 1/2 tsp) before meals or domperidone sold everywhere in the world, but the US. PM me for more info.

Best of luck-

Julie

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I think gastroparesis is like wearing a holter, you always get the test on a day the problem is not being a problem! I'm quite certain you can have days where things just aren't as cranky as other days and it's unfortunate that one test can rule out everything.

My son had a small bowel follow through, where he had to drink barium with Nestle's quick in it. He tossed it in about ten minutes and they tried to force him to drink it again. I told them the fact that he couldn't even hold the stuff down should tell them something and refused to let them give it to him again. His report stated "non compliant" Well I think the inability to keep stuff down is an indication of "not normal" but that's just me.

So, I would not discount it based on one test on day your gut just decided to fly right. morgan

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good to know.. problem im having is i need to find a gastro.. who one is familar with dysauto. and 2 is going to stop telling me that all my GI symp are from STRESS!!

Hello!!!!! that irritates me so bad! Yeah like stress is going to cause to me to have severe nausea for a wks straight at a time.. or to have projectile vomitting... and the list goes on...

SO yea.. i was wonder! thanks for the info...how else might i get an accurate dx?

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Guest tearose

yes, that was my post. I was not symptomatic during the nuclear emptying test. Due to what they did see and to the previous recent endoscopy they dx periodic gastroparesis with GERD/reflux.

It reminded me of the years I spent suffering with a sick gallbladder and the only time the test showed delay was when I was hospitalized during an "attack" with fever and throwing up and pain that made me roll around. At that time, they could see delay and did remove my gallbladder. The surgeon said he could see from the internal grey and scarring and my gallbladder had adhered to my liver that I had been suffering for years!

If it helps, now I maintain myself by eating smaller more frequent meals and avoiding foods that tend to ferment in me.( especially if I am having a rough time like being active or sick) It is like my body can't multi task. I have learned that if I do something active like some housecleaning, I must not eat a salad for lunch because I will have trouble digesting it. I am better off having a bowl of soup or a 1/2 of a sandwich rather than raw vegetables, salad or heavy food.

When I am having a very symptomatic gastroparesis spell, I need to go to soft and liquid foods, go back to supplemental shakes and in a week to ten days I can usually get back on track. I use a protein supplement by Global Health called pro-cel as discussed with my GI doctor.

best regards,

tearose

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  • 1 year later...

Hey Julie and all,

I haven't been on here in awhile. A LOT has gone on but specifically I went back to mayo a week ago because not only were my POTS symptoms worse, i was having bladder problems, and had been diagnosed via four hour gastric emptying study with gastroparesis (had all the classic symptoms). i had a neurostimulator implanted a year and a half ago which has dramatically helped. i was down to 110 at 5'8' and not able to eat without getting sick and now i am 140 and doing well stomach-wise but my local dr wanted me to go back to mayo thinking i was in autonomic failure....

i went back to mayo and they had me turn the neurostimulator off and did another gastric emptying on me, along with transit time of small and large bowel. they told me that my stomach emptied normal and that i didn't have gastroparesis??? i don't understand this as the gastric emptying i had back home two years ago followed same protocol and was significantly abnormal then and the neurostimulator has resolved most of my GI symptoms. they did say that they saw a small bowel dysmotility but "not to worry about it"....

i was reading the thread here and am frustrated and confused at what the diagnosis is now and what had been causing all the GI problems pre neurostimulator ?? can gastroparesis be intermittent ? have any of you been told this by a GI? i was told at mayo that it is possible but usually seen more in diabetic GP patients as their blood sugar levels alter gastric emptying test results ......i have also heard that generally small bowel dysmotility usually goes along with GP ....?

The GOOD news is I don't have autonomic failure. mayo is running bloodwork for mitochondrial disease and also EDS vascular form but pretty much all the testing for neuropathy and auto failure checked back ok which i'm glad about.

sorry i haven't been on here in a long long time. i have been pretty sick with POTS symptoms and i'm now out on disability.

hope you all are doing well.

-Angela. (cardiactec)

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So good to see you, Angela! I think about you from time to time and have wondered how you're doing. Yay on the 140lbs!!! It may sound weird, but Yay on the disability too. I remember you working so hard when you were so incredibly sick and your weight was dwindling dangerously low... Hopefully now you can take better care of yourself.

Sorry about your worsened symptoms :unsure: Small bowel dysmotility is NOT nothing to worry about. It has the exact same symptoms as gastroparesis and it requires the exact same treatment. It can be severely disabling. Chronic nausea and vomiting....bleh. I'm dealing with a pretty bad bout myself all of the sudden. Gastroparesis and small bowel dysmotility can both be intermittent.

To get the best help for your GI woes, you should see a GI motility specialist who is aware of the connection between dysautonomia & delayed motility. My son has one at Hopkins & I use a crusty old local GI, who "gets" it. Are you taking any prokinetics now? I'm not, but ramping up my miralax big time, trying not to use any anti-emetics or pain killers as they also slow motility. My son is using liquid pediatric erythromycin and gets good relief.

I'm glad your blood tests so far haven't shown anything awful. I was tested for the EDS, Type 4 too- scary. I'm crossing my fingers and toes that yours is negative too.

Don't be a stranger!

Julie

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So good to see you, Angela! I think about you from time to time and have wondered how you're doing. Yay on the 140lbs!!! It may sound weird, but Yay on the disability too. I remember you working so hard when you were so incredibly sick and your weight was dwindling dangerously low... Hopefully now you can take better care of yourself.

Sorry about your worsened symptoms :( Small bowel dysmotility is NOT nothing to worry about. It has the exact same symptoms as gastroparesis and it requires the exact same treatment. It can be severely disabling. Chronic nausea and vomiting....bleh. I'm dealing with a pretty bad bout myself all of the sudden. Gastroparesis and small bowel dysmotility can both be intermittent.

To get the best help for your GI woes, you should see a GI motility specialist who is aware of the connection between dysautonomia & delayed motility. My son has one at Hopkins & I use a crusty old local GI, who "gets" it. Are you taking any prokinetics now? I'm not, but ramping up my miralax big time, trying not to use any anti-emetics or pain killers as they also slow motility. My son is using liquid pediatric erythromycin and gets good relief.

I'm glad your blood tests so far haven't shown anything awful. I was tested for the EDS, Type 4 too- scary. I'm crossing my fingers and toes that yours is negative too.

Don't be a stranger!

Julie

Hey Julie!

Good to talk to you again. It's been too long, my bad!

Yes, bitter sweet with the disability. At least now I can rest this weary body and get my strength back. Slowly but surely. We ARE more than conquerors and I believe we'll overcome this someday soon.

I am not taking any pro-kinetics. I tried them all before the neurostimulator and none of them helped me. I even tried the lovely endoscopic botox injections, NOT helpful. I really don't have to take anything now because the stimulator is doing such a wonderful job! Occasionally, I have some nausea issues in the middle of the night but a little zofran or tigan generally does the trick for me.

I agree that small bowel dysmotility is definitely something TO worry about! the neuro at mayo is the one who said it wasn't anything to worry about. the GI guys said that it can cause, as you said, same symptoms as gastroparesis. They were thrilled to see my weight up by 30 pounds from the last time I was out there -- obviously the stimulator is working!! ;o)

Now remind me, do you have both gastroparesis and small bowel dysmotility? any issue with the large bowel?

so good to talk to you again Julie!

catch up later!

Angela.

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Hi Angela-

Unlike my son, I've had few fancy GI tests. However, my GI has DXed me with gastroparesis, small bowel dysmotility, and colonic inertia. For a while, I was unable to eat much (nausea/vomiting) & hospitalized repeatedly with bowel obstructions. My weight was so low & I was so weak- very scary. At one point, my GI recommended a colonoscopy prep EVERY DAY.

I was very motivated to have a life & get out of the hospital :(. Finally, my GI OKed up to EIGHT doses of Miralax a day to get me home. That's what I did. Gradually, I've been able to bring the dose down to 2 every night. (Obviously, I've improved a lot!) Out of the blue, the severe nausea is back and I'm back up to 4 doses a day. I don't want to go through this again. I'm waiting for the next shoe to drop... I'm avoiding zofran, phenergan, Alleve, and Tums for the moment to jump start things again. I also run & drink as much liquid as I can.

I hate that you are dealing with this again too. I take it your stimulator is back on & working -YAY!!!! I hope I don't have to go that route, but glad it's working for you. I hope you get answers and treatment solutions soon.

Julie

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Hi Julie,

Sorry to hear you are having troubles again. Have you have the nuclear transit follow through test?

funny you mention miralax. i am going to give it a try if i need it in the future. funny, none of the GI guys at mayo mentioned it but the rheumatologist at mayo went on and on about it! haha.

how is your son doing? does he have GP or just the small bowel stuff?

Hi Angela-

Unlike my son, I've had few fancy GI tests. However, my GI has DXed me with gastroparesis, small bowel dysmotility, and colonic inertia. For a while, I was unable to eat much (nausea/vomiting) & hospitalized repeatedly with bowel obstructions. My weight was so low & I was so weak- very scary. At one point, my GI recommended a colonoscopy prep EVERY DAY.

I was very motivated to have a life & get out of the hospital :ph34r:. Finally, my GI OKed up to EIGHT doses of Miralax a day to get me home. That's what I did. Gradually, I've been able to bring the dose down to 2 every night. (Obviously, I've improved a lot!) Out of the blue, the severe nausea is back and I'm back up to 4 doses a day. I don't want to go through this again. I'm waiting for the next shoe to drop... I'm avoiding zofran, phenergan, Alleve, and Tums for the moment to jump start things again. I also run & drink as much liquid as I can.

I hate that you are dealing with this again too. I take it your stimulator is back on & working -YAY!!!! I hope I don't have to go that route, but glad it's working for you. I hope you get answers and treatment solutions soon.

Julie

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He's Dxed with small bowel dysmotility. Erythromycin, nexium, and ranitidine keep him controlled, thank God.

Give the Miralax a try. It seems like if you get things moving ANYWHERE in the GI tract, the rest follows- weird, but it's worked for me. I also read recently that chewing gum helps stimulate GI motility. Docs are now encouraging women to chew right after a C- section to "unfreeze" shocked and frozen GI systems. That also helps me. Weird, but I'll try just about anything to get rid of that nausea and bloating.

Julie

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morgan --

good point -- ie: gastric emptying like a holter. .......it is a long story why my enterra device isn't back on yet (as i've been home from mayo now for a week! grrrr to the GI office) but i have good and bad days with gastroparesis. i have had three gastric emptying's ......two were abnormal and one (the latest one) was normal .......today i am so nauseous it's not even funny, yesterday wasn't too bad......i'm sure if they had done an gastric emptying yesterday it would have been normal ....today ?? forget about it!

at any rate, i can't wait until this device is back on!

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Guest tearose

This is an old thread!!! Two years of updating to do...

My update would be that I continue to manage my GERD and occasional spells of Gastroparesis. I unfortunately wound up however in the hospital last May with a bowel obstruction! I managed to open up without surgery and have managed okay for the last year until lately. I am having left sided pain, nausea, bound up...and I feel like I felt last year just before I was really sick. Sooo, I'm off to see a new GI next week. It is suspected that I have old adhesions from my total pelvic reconstruction contributing to this problem. I haven't had a colonoscopy after the surgery so I suppose that is the test I need now.

I was told that periodic gastroparesis happens when our dysautonomic gut shuts down and to go on a liquid and soft food diet and take mirilax until food no longer fermented and I was okay again. Whoever told you differently cardiactec should be directed to speak with your dysautonomia doctor or you will be put through so much testing and probably wind up back at the same place!

What is going on for you now? Since I am on a similar path I want to share what I am learning with you.

hang in,

tearose

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hey tearose,

so sorry to hear you're having troubles again.....

why did you have to have total pelvic reconstruction ? (sorry, i have been out of the loop for so long, i can't remember everyone's stories! i can barely remember my own! ha!) ....

i have been going through quite the ordeal. had to go out on disability because of urinary incontinence, couldn't stand longer than 10 minutes without symptoms of dizziness, shakiness, and heart rates between 170-200 (sinus tach)......my cardio thought i was in autonomic failure as i was diagnosed in maine two years ago with gastroparesis, then started in with urinary stuff 7 months ago, and then the increasing POTS symptoms and arrhythmia's left and right, question of vascular EDS also......

i had the enterra stimulator placed two years ago for the nausea, vomiting, feeling full quickly and it has been a life saver ....went from 110 pounds at 5'8' to 140..... so mayo wanted me to have the enterra stimulator shut off before i went out there because they wanted to do their OWN GI testing, along with a repeat of ALL the autonomic testing I had the LAST time i was out there.....they also had me check in with cardiology, urology, rheumatology, and geneticist. ........phew.....so they did the nuclear gastric emptying along with the small and large intestine transit follow through (never had the motility test done on the intestine, just stomach) ..........they said my gastric emptying was normal and that my small intestine motility was abnormal .....the GI said that gastric emptying can vary and also testing variables from one facility to another can occur.....even so i asked him aside from the gastric emptying, if i did not have gastroparesis, why back home on two different endoscopies was there still food in my stomach after a 12 hour fast? he didn't have any answers for me, only that sometimes gastroparesis can be intermittent but usually it is only seen with diabetic etiology......the GI then said they saw small bowel dysmotility and that the symptoms of small bowel dysmotiltiy can be the same as gastroparesis, so he said it can be difficult sometimes to sort of between the two.....he said i could have both, or just one or the other ......they wanted to do a gastroduodenal motility endoscopy, which had been schedule before i had the nuclear study, but after the results of the nuclear study, they said there was no need to do the endoscopy ......

as for all other testing, neuro came back normal except for, of course, the exaggerated heart rate response on tilt at 180 BPM. cardio just showed the same and MVP on echo. rheumo and geneticist confirmed EDS III and they are testing me for mitochondrial disease and EDS IV (the results of these won't be in until next week).

I met with Dr.Low at the end of all the tests.....he couldnt offer any new treatment regimen from the last time i was out there.......he said the motility issues of the small bowel had nothing to do with an autonomic issue and that it was probably "functional" and nothing to worry about (whatever THAT means).....he said the uro testing didn't show neurogenic bladder, so i just supposedly have an "overactive" bladder ? he said overall, i just have an extrordinarily fast heart rate when i am standing...............sigh ...........no answers, no new treatments ....it was a horrible week out there and i'll never do it again .......

funny, the only one at mayo who seemed helpful regarding the GI stuff was the rheumatologist! LOL -- and he pretty much recommended what you did -- miralax. I do have some issues with constipation and i was saying to julie that the GI guys wanted to do some manometry thing on me to look for pelvic floor dysfunction but from the sounds of the test and the "biofeedback" treatment, i wasnt interested ....

i agree, too much testing = a lot more confusion! especially when dysautonomia can change symptoms drastically (and physiologically) from one day to the next.

where is your dysmotility in your GI tract? have you had the nuclear emptying study with small bowel/colon follow through?

talk soon,

angela.

This is an old thread!!! Two years of updating to do...

My update would be that I continue to manage my GERD and occasional spells of Gastroparesis. I unfortunately wound up however in the hospital last May with a bowel obstruction! I managed to open up without surgery and have managed okay for the last year until lately. I am having left sided pain, nausea, bound up...and I feel like I felt last year just before I was really sick. Sooo, I'm off to see a new GI next week. It is suspected that I have old adhesions from my total pelvic reconstruction contributing to this problem. I haven't had a colonoscopy after the surgery so I suppose that is the test I need now.

I was told that periodic gastroparesis happens when our dysautonomic gut shuts down and to go on a liquid and soft food diet and take mirilax until food no longer fermented and I was okay again. Whoever told you differently cardiactec should be directed to speak with your dysautonomia doctor or you will be put through so much testing and probably wind up back at the same place!

What is going on for you now? Since I am on a similar path I want to share what I am learning with you.

hang in,

tearose

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Guest tearose

You asked why to the pelvic reconstruction...

Sadly, I "pushed" when I shouldn't have. You know how we sometimes listen to "others" who say maybe you should do a little more? Well, we really need to trust our own judgement when it comes to pushing or not. I was trying to do some gardening and did too much. I felt a pull inside and over the next few days my entire pelvic area began hurting terribly.

Long story short...after seeing many Gyns and trying to figure why I had such extreme obturator, rectal and pelvic pain, I wound up going through complete testing with a Uro-gynecologist. I needed surgery to do repair and when the doctor got in there he said he needed to use mesh to reattach my pelvic muscle to the back wall of me...I was really a mess inside.

I've pondered this and I think I was not getting adequate blood flow while doing that gardening and it contributed to the muscle tear and overall wear of my insides.

Anyway, it was a big ordeal surgery with a total hysterectomy done at the same time. My family has a BRACA 2 variant and ovarian cancer was not another challenge I wanted to ever have to contend with. My POTS DID flare up before and I had a blood pressure of 60/40 before surgery. I needed an IV for an hour before they could start surgery. Then, I went through many hours and wound up needing two blood transfusions. You naturally can imagine it took many months to get some life back in me.

So, fastforward to the obstruction. I don't recall what the medical location was called but the obstruction area tends to be three inches below my belly button, one inch above my pelvic bone and closer to my left hip bone...is that small or large bowel?

As far as upper digestive issues...I just need to be able to manage it. I am usually okay. I do get times when I am not. If the food I eat a 7pm comes up the next morning at 8am as fermented undigested stuff...then I know I have to switch to smaller meals, soft foods and liquids and take it easy for a bit.

Hope I answered your questions.

I just don't understand why the doctor wants you to shut off your gut pacer if it is helping you. Why did you get it placed then? Was it a mistake or perhaps did it retrain your body? Will you manage with it off or will you regress? It raises many questions.

I'm frustrated for you,

tearose

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Hi there. What an aweful time with the whole pelvic floor reconstruction!!! Unbelievable! I am glad that they got most of it resolved for you however I wonder if your (sounds like lower GI) issues are from all the troubles you went through from repair of the pelivc floor. (??).

The doctors don't want to keep my device off. Mayo just requested that it be shut off for my week there (they wanted results that weren't skewed by having my device on so they could see what my stomach and gut essentially could do on it's own without any help of the stimulator.

Keep me posted on everything. I will be around here more often as I'm now out on disability.

Angela.

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