Anyone with gastroparesis mind sharing symptoms before being diagnosed as well as after? Thanks
Hi Tonya,
I’m a long term sufferer. My symptoms were pretty straight forward, though it did take sometime to get a diagnosis. I was nauseated 24/7 vomiting and had odd sugars - higher many hours after eating lower after eating. Some folks have ‘flairs’ that come and go, others have it 24/7 like me. I say the nausea comes in waves, from low ones to the extreme.
I was formally Dx with endoscopy after a poorly done emptying study (where you eat eggs and I couldn’t eat the entire meal and threw up after an hour 1/2 but told I was ‘normal’).
There is a support group on Yahoo for this disease and I found the eating tips very helpful.
FYI - after failing with all medications, I finally took a drastic step in trying to fix this and improve my QOL. It has not yet worked, but you can find a lot on this site, under Diabetes Complications → Digestive issues.
I also found the info on NORD (national organization for rare disease) to be helpful: https://rarediseases.org/rare-diseases/gastroparesis/
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I had a friend who was just diagnosed a year ago and she was losing weight like crazy and felt so sick and honestly thought she was dying of cancer! She manages it now by pureeing all of her food but I imagine this is what helps her…and is not what everyone with gastroparesis needs to do.
All I say is that my heart goes out to you @mskdka for dealing with both type 1 and gastroparesis and I hope you’ll be ok @Tonya2!
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Thank you @mskdka @Leelaa. I have had type 1 diabetes for 35 years. I see the GI tomorrow and am so nervous! I always expect the worse! i ate 3-4 bites of oatmeal yesterday morning and was so nauseous and my stomach just rumbling. I took zofran, but told my husband I hate having to rely on that day after day. Drinking doesn’t make me feel bad like eating. I’m to the point where I will drink anything! Any other advice is appreciated.
Don’t be nervous just hear what the GI has to say and know that if it doesn’t give you an answer, you may need to look further. It sometimes takes a few Dr. to get a Dx, sometimes not. This is treatable for most people and you can still have a quality of life. Zofran is a great help. Let us know what they say.
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Saw the GI today. He highly suspects its gp. wants to do gastric emptying scan and a CT. Wants me to start on elavil at night but after the scan. He suggested meal replacement drinks because at this point any solid food makes me sick. I’m starting to get really tired of this as I’m sure all of you dealing with it feels the same.
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My gastroparesis comes and goes for no apparent reason, and it’s appearance or disappearance has no connection with blood sugar levels. What I have found is that by eating only pureed foods I can do a lot to diminish the unpleasant symptoms. Another important treatment is Domperidone, which is a drug that has been falsely accused of causing heart disease, but the best research shows that it is essentially benign. Unfortunately, its bad reputation means it is unavailable in the United States and difficult to obtain in England. Just to check out the accusation that Domperidone causes a potentially lethal elongation of the Q-T interval in the cardiac rhythm I had an electrocardiograph ten years after having taken 60 mg of Domperidone a day, and all they found was very minor, clinically insignificant changes in the rhythm.
Hi Tonya,
We haven’t had a follow up, how are you doing now? Remember, the empty scan is just a picture of how you were emptying at the time (impacted by hormones as such as well)… they may want to do endoscopy or upper GI series. I tell everyone the severity of the emptying (fast, slow or normal) has no relation to the amount of nausea you feel. I like the recommendation of Seydlitz above for the domperidone (read the studies there before taking the medication) and it was nursing moms trying to get more milk that used IV…
You should be looking to the websites for gastroparesis for help, remember it’s not a diabetic friendly diet but you can make it work…
I am dealing with 24/7 nausea and vomiting and a VERY severe case…but I do manage every day … I go to work have fun etc… probably don’t interact enough with people during meal times and such but other than that my QOL is good
Hi!! I am actually at the GI office now waiting to be seen. I’m sure he will want to do upper GI. I haven’t had a lot of nausea the past week,but it comes and goes. I have eaten small amounts of food at supper the past two nights and did ok. I stopped as soon as I started getting that full feeling. Mostly still liquids.
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I had a barium swallow which was radiologically tracked to confirm the diagnosis. The irritating fact was that they had no insulin for me to take before making make take the required bacon and eggs meal that went with the test.
ohhh nice …did they know that high blood sugar (over 180) slows down digestion…
Thanks for posting the link to rarediseases dot org. It is a very informative article.