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Darlia
@darlia

Posts: 132
Joined: Jul 21, 2017

Does anyone else have Gastroparesis not caused by diabetes?

Posted by @darlia, Nov 9, 2017

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

REPLY

My grandson is only 19 years old and he has this. He takes protonix and watches his diet. I️ was very surprised someone so young has this. Our family has a history of bad stomach problems. Also diabetes. He does not have diabetes.

Liked by blackoutthesun

I do. I took Propulsid for it for about 3 months before they took it off the market in 2000. It worked well for me. My doctors do no not think I am a good candidate for Reglan. I have a little bit of neurological problem… just a tic. In 2013 I tried Domperidone and I had side effects, but I cannot remember now what they were. After 2 weeks I discontinued them. A gastroenterologist at the Mayo Clinic in Jacksonville FL prescribed the Domperidone for me and I had it filled a local (Albany GA) compounding pharmacy. You might want to try it for a couple of weeks to see if it is for you. It was long ago, but I think they were pricey. If they work it would be worth it. I eat no raw vegetables or fruit except ripe bananas. Too much fiber at one time can slow my stomach emptying more. I eat soft cooked vegetables, and fruits, and tender meats. I had to have gastric bypass to fix a paraesopageal (sliding) hiatal hernia in 2014. My stomach only holds about a cup of food. So I eat about ever 2-3 hours and throw some high calorie cookies in there to get my calorie intake up to maintain weight. I do like those Lorna Doones though. More suggestions on food here: https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792 . I also have achalasia and Barrett’s esophagus. I take the generic of Prilosec twice a day.

It has been determined that since I have the rare FGFR3 ANTIBODY which is the cause of the Peripheral Neuropathy, it is also the cause of the Gastroparesis since this is caused by the nerves but working properly in the stomach.

Liked by blackoutthesun

How did you find that out?

@nanny23

How did you find that out?

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@nanny23
They did a gastric emptying study. You eat a small meal, which usually involves eggs and toast.. sometimes they add bacon.. that they put a little radioactive material in so the camera can follow the food as it goes down the digestive track. It has been a few years since I had the test, but think a scanner took a few pictures and then after a certain time a few more pictures were taken.. long enough to sit a while in a waiting room between sessions. An upper endoscooy was done around the same time.. I think a week or so before. There was undigested food found and a small bezoar. With me they do not know what caused me to have gatroparesis.

Liked by blackoutthesun

@nanny23

How did you find that out?

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@nanny23 Nanny, at this point I can only add a bit of info. One of the docs who did my endo mentioned that this is common as a side effect of several forms of neuropathy. That is, when whatever you have that will bring neuropathy gets into one of two places, the esophageal valve system or the sensori-control nerve, it can make the valves inoperable or inefficient. There are several disorder which can do this, such as various forms of Amyloidosis such as Crohn’s, Multiple Myeloma, Light Chain, Gelsolin, any kind of misfolded protein. Also, of course, diabetes, cancers, simple nodules on the valve system. When they checked me for muscle movement, they found that some of the tubing was not moving quite as it should when I gave the command to swallow, or cough, or whatever. That would probably be the neuropathy, it seems, as I have neuropathy all over my body. Maybe that is why the doc calls me “Psycho”.

Liked by blackoutthesun

@nanny23

How did you find that out?

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I have neuropathy in my legs could I️ possibly have in my stomach also? Thank you so much for your reply

@nanny23 Any place you have nerves, with or without muscles.

@nanny23

How did you find that out?

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@nanny23.. Hi. Same for me. My feet, legs, a little in my hands..it will progressively spread too. Our stomachs use nerves to digest our food. The nerves not working properly contribute to the outcome of Gastroparesis. For me, it is most likely caused by the FGFR3 ANTIBODY so I would not be idiopathic (meaning unknown cause). For until it was discovered that I have this overabundance of this bad antibody, I was told my reason for having Gastroparesis was unknown.
Darlia

@nanny23

How did you find that out?

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What is FGFR3 antibody and how did they find out you have it? Does that mean you have an autoimmune disease causing this? Thanks for replying.

Liked by blackoutthesun

@nanny23

How did you find that out?

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Hi @nanny23..Ihad blood work sent to the Washington University in St. Louis, MO by my neurologist. He contacted me when it came back about 5 wks later. He told me that it was positive for the FGFR3 antibody which is a bad antibody gene. He said there is no way to know how it became so high or when it started. It could have been from some trauma. I have had trauma most of my life so, that’s going to remain a mystery I guess. Normal # should be less than 3,000 and mine is 14,000. So, without any other cause so far for the gastroparesis, it would be suspected that this is the cause. This antibody causes neuropathy. If you go to my post on the FGFR3 Antibody, you can read more about it. Be safe out there! Darlia

Liked by blackoutthesun

@nanny23

How did you find that out?

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I do not believe that FGFR3 is caused by an autoimmune disorder. However, I DO have autoimmune disorders separate from the Peripheral Neuropathy.

Liked by blackoutthesun

Hi @darlia,

We have several discussions about gastroparesis which you may wish to view:

– Does anyone else out there have gastroparesis? https://connect.mayoclinic.org/discussion/hi-all-does-anyone-else-out-there-have-gastroparesis/
– GERD, gastroparesis, neurogenic bowel https://connect.mayoclinic.org/discussion/gerd-gastroparesis-neurogenic-bowel/
– Failed Nissen w/gastroparesis & possible MALs https://connect.mayoclinic.org/discussion/failed-nissen-wgastroparesis-possible-mals/

I’d like to invite @katmandoo @citygirlannie @faycarole @clemlaa @debnjay @galy @jlfisher56 @robatk17, to join this discussion and share their insights as well.

The Mayo Clinic link provided by @fourof5zs above, (thank you!) also has some great information about ongoing research and studies to investigate new medications to treat gastroparesis.

I have idiopathic gastroparesis and am pre diabetic.

I was told I had gastroparesis after I had surgery for a hiatial hernia operation 3 years ago. I have taken too many medications to count. I’ve also tried every diet with no success. I was told my vegas nerve was damaged so my digestive system no longer works. I have learned to live with it. I have lost a lot of weight and I have no strength left. I hope you have better luck.

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