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DiscussionAnyone diagnosed with Gastroparesis?
Digestive Health | Last Active: Apr 10 5:06pm | Replies (204)Comment receiving replies
Replies to "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..."
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.
How did you find that out?
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.
Yes it can. I was on it many years and started having 6 months of terrible shaking, and almost the inability of writing my name. Then .a black box warning just came out stating the severe side effects you mentioned and that they may be permanent. I tried domperidone from Canada which helped but then used the erythromycin that my insurance paid for (125 mg 4 times a day as a prokinetic---stomach contraction). I was lucky that all the shakiness abated but took many months. It is very serious. AS a nurse, we used to use it on infants who had reflux. I never knew it had such severe side effects and like I said, I took it at least 6 or 7 years before it became so bad. NEVER again! Tardive dyskinesia is a horrible side effect that I have had patients with and I thank God I did not get that. The uncontrollable shakiness was enough. It almost was to the point I had to sign an X. My neurologist was so thorough always reviewing all my medicines and was the one who found the NEW alert!
I am 52 and have idiopathic gastroparesis. It was confirmed with gastric emptying test in 2015. I don't vomit, but the nausea is moderate to severe. Zofran, nor phenergan was helping anymore. I was put on marinol and i now have relief from the nausea. Finally, but marinol takes some getting use to as it is synthetic Thc. It gives you a (high) feeling, but your body adjust to it. I use either protonix, NEXIUM, or dexillant for my reflux and the occasional zantac 300mg if breakthrough reflux occurs
I was diagnosed with Gastroparesis which is not related to diabetes and it is not clear what causes it. I also was offered that horrible drug and declined it. I tried many fermented foods (that helped a little) and always questioned the doctors if I have a low acidity in my stomach. To my surprise they couldn't test it and actually were prescribing me medication to lower the stomach acid. Since I was feeling worse after prilosec and similar drugs, I started to do different home tests to see if my stomach acid is insufficient. Turns out - it is. Some people are just born with it, and some people acquire this disease as we age. Then I found this mineral water Mineral Water Essentuki No. 17. Make sure to take Essentuki No. 17 and not No. 4. I drink a few sips of it 30-40 minutes before food intake. So I go through less than 0.5 L bottle per day. I can not believe how much my symptoms improved. Not bloated anymore. Still have some air pushing out (belching) but pain is also mostly gone. One thing - I lost 15 pounds when I started this water and I was in normal weight. Probably because the food started to move faster. I am so happy I finally found what helps me after 2+ years of suffering. Try it. You can find it online. Good Luck!
I wished I had never had the nissen fundiplication done when I had my gastric pacemaker implanted for my idiopathic gastroparesis. I was miserable afterwards plus he accidentally cut my spleen and couldn’t get it to quit bleeding so had to take it out. I wouldn’t recommend the nissen fundiplication to anyone. Kathy
Please see my response below. peck1944
I have gastroparesis after hiatal hernia repair surgery (nissen fundaplication). I take zolfran as needed for the stomach pain. I also get some relief from gasX. I am very careful about my diet. I avoid any raw fruit or vegetables. I also try to eat a low fat and low fiber diet. I have low energy and depression as a result of this disease. It has changed my life. I used to travel extensively but now I am limited because of dietary needs. I have learned to live with this but it is a challenge!
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.