If not gastroparesis then what?

Platinum

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Hi everyone.

About 18 months ago I was diagnosed with gastroparesis – I was having loads of hypos after food as it was not being digested, vomiting (usually in the small hours), feeling full – all the usual symptoms. Interestingly, I was diagnosed by my endo without a stomach emptying study.

Anyway, I was given Domperidone which sometimes helped a little, plus some anti sickness medication.

Over the last six months or so, my hypos have gotton a load worse and I am finding that glucose is taking an hour or more to work, I guess as it is just sitting on top of undigested food. I have been losing consciousness about once a month due to the hypos as my blood sugar falls so fast my CGM can’t keep up.

This prompted my endo to order a stomach emptying study which came back as NORMAL???

I wonder if this has happened to anyone else?

I had to not eat for 12 hours before the test and was given a small meal and a small cup of water to drink prior to the test.

It seems to me that this test is not related to real life. People must normally eat a lot more than the tiny meal I was given. I have a Sunday roast (obviously a heavy meal) then a hypo. I did an experiment the other day – I had my evening meal (boiled fish and vegetable rice). Bolused as normal, waited an hour and then ate ten chocolate digestives (110gCHO) and did not bolus. My blood sugar took nearly three hours to start rising and I only just kept it down overnight. Clearly my digestive system has a problem. If not gastroparesis then what?

I would appreciate any comments.
 

EKS

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Hi,

Perhaps request another gastric emptying study? I was diagnosed last year and had two studies with different results. One mild and one severe... definitely worth a double check!
 

JMK1954

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My sister had gastroparesis. I know she was not given very much help or advice on how to deal with it, but one of the strategies she arrived at herself, was to eat the whole meal first and only take insulin at some point afterwards. This does make some sense I suspect. Sorry to hear about your problem. I hope you get a real answer soon. I am no medical expert, but it strikes me that digestive biscuits and chocolate are also digested more slowly than some other varieties of carbs. Perhaps that didn't really help the situation. Please feel free to ignore this if you don't think it's helpful.
 

donnellysdogs

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I would do some basal testing.... and see if your background insulin is too high.

That could be impacting upon the food timings and your fast acting insulin?

What fast acting insulin are you using?

With GP it’s unlikely that you would be able to eat one choc digestive, let alone ten.
 

NicoleC1971

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No experience of GP (neuropathy of the vagus nerve) but found this YouTube clip from the fabulous Dr Bernstein interesting in that he references the test you described and doesn't rate it due to the unpredictability of the condition. Hope this is helpful in any case for when you talk to your endo:
If you do rule out GP then perhaps as dd suggests, could it be basal e.g. when you don't eat your blood sugrs are generally too low or are they flat/normal?
 

jhyb

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I have had similar issues. The only hypo treatment that works when on a full stomach is full sugar coke. My dietician tells me that that is a sign of gastroparesis. It is mild and I am currently not having terrible symptoms. Smaller meals help and I have definitely improved since stopping eating gluten and dairy. The bloated feeling has disappeared except when having accidently eaten dairy or gluten or I've over eaten!
 
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alohanicky2009

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Sorry to hear your problems I have been diagnosised with gastroparesis but I suffered few hypos but extremely high BG levels . I was suffering DKA regularly requiring hospital admissions. I found eating little and often avoiding food that is hard to digest meat nuts raw veg and certain fruits . I had little success from antibiotic therapy but had brilliant results from Botox into the vagus nerve