Newly gastroparesis - and soooo many questions

Coping & Support
1

T1D since 1963. On Omnipod since I’m not actually sure when, early 2020? Somehow 2020 got tumultuous, memory-wise.

My endo - T1 30+ years herself - thinks what I am seeing the last 3-4 weeks can be blamed on gastroparesis. I always thought gastroparesis hurt. I have, if anything, been feeling better than usual.

Question #1: Can you have gastroparesis and feel great every day (stage whisper) if you don’t count that your blood sugar is constantly careening in unexpected directions?

And no stress. My normal state is often Stressed but not in the last month or so. First reason is a long story. But also I solved a problem I’ve been working on for ages, and I finally lost maybe my 16th and 17th pound since last winter by just walking and climbing stairs more all year. I’d been working on #16 all summer and #17 just left of its own accord.

I am not in a stressed zone. But my endo circled around to asking about stress 3 times. I guess this is Question 1a: Is gastroparesis so very much more common with stress (might it indicate that I am not feeling as unstressed as I think I am)?

Symptoms: This morning is more or less typical of most of the time (but not all):

  • starting BG: 137,
  • bolused appropriately for breakfast,
  • ate bfast 15 minutes later - I meant to stop waiting 15 minutes but I am so not a morning person,
  • BG started dropping… and kept dropping…
  • 90 minutes after eating, BG was 99. DOWN nearly 40 points, not up at all.
  • leveled off around 100 until about 2.5 hours after eating,
  • but wasn’t up to my original starting BG until more than 3 hours after I ate.
  • Took a brisk walk and my blood sugar CLIMBED about 50 points during it - I’m someone who usually drops more than that during a brisk walk.
  • Didn’t start coming down again until I bolused for a late afternoon snack.

Question #2: Does that sound about right for gastroparesis, or could those symptoms ever be anything else? Blood sugars heading off in all unexpected directions? The one weird thing about talking to my endo was that she didn’t want herself to saying for sure “You have gastroparesis.” But then, it was a phone call.

My endo says gastroparesis doesn’t always manifest the same way. Question #3: Is that your experience?

She says: It might go away, it might slowly get worse, no way of predicting. Well, isn’t that wonderful. But is it your experience? That’s Question #4.

I was diagnosed with gastroparesis 25 or 30 years ago (and possibly that was the horrible ulcer I got during one gruesome terrible summer job in college). Or at least that’s what they said then. It was strictly the upper valve of my stomach and the symptoms were so different. Mainly, burning pain. Total change in diet, backache from sleeping propped up, and oh, the burning. So, Question #5: just how different can symptoms get???

I’ve also been experiencing occasional… ahem, what I’ll call profound belches. Deep, as in baritone or even bass (I sing alto), and coming from somewhere… just, abnormal. Question #6: Is belching a more? or less? common symptom? Or is it just coincidental and unrelated?

General Questions #7 through 100: Any advice for living with this? Seems like staying prepared for changes would have to be one, but can any advice be more specific?

I was already planning to stop waiting 15 minutes between bolus and eating, but at her advice I’m also going to extend the bolus for maybe 1.5 hours, to start, well see how it goes. I did that this evening for dinner and holy mackerel, that worked well. But I know I can’t expect reliability here.

I did see in a posting a year ago, @Hen51 suggested taking glucose tabs with water for faster effect and to try to get them past the problem into the bloodstream sooner. Thank you for that @Hen51, I know I’ll need that.

Just a few questions. So far. THANKS.

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Hi @theNoz . If I haven’t mentioned it before we were diagnosed the same year!
It sounds like you haven’t been tested yet but are doing some research. I was tested for gastroparesis 15 or 20 years ago - as I recall they had me eat an egg with radioactive iodine or something in it then somehow or other they tracked it as it went through my system. I don’t recall the details but do remember going back to work joking that I might be glowing that day (no worries, I wasn’t actually). I did get a positive diagnosis but over time it went away. I’m afraid I don’t recall my experience during the time I had it but I think any major issues would have stuck in my mind.
Re belching - there’s really no delicate way to say this so I’ll just dive in: a few years ago (long after the gastro dx and after I presumably had recovered) I “became gassy.” It happens as you get older, with or without “the big D”. Of course it’s annoying and embarrassing so I went to see a doctor who asked if it came (ahem) from up top or down below, and I believe they recommended I take an OTC treatment. Leafy veggies and spicy foods are known culprits. I’ve just learned to live with it and be as discrete as I can (sorry for TMI).

Hopefully testing will give you a definitive answer and you can proceed from there. Best wishes.

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Thanks, @wadawabbit. Very strange choice, an egg, it seems to me, but whatever works, I guess.

I don’t get the impression testing is necessarily in my future. Overall I get better health care up here in Maine than I did where I used to live, but it’s not necessarily fancy better health care. Time will tell. I “always” have a November visit with my gastroenterologist, but discovered there wasn’t any set up for this year. Turns out my gastro has moved on and there’s a new one, so I have an appointment in January, although they say the waitlist usually comes through pretty fast.

The belching - LOL I used to have a horrible belching problem. Turned out, DUH, if you are making a breakfast that includes brewer’s yeast every morning (it was The Thing back then), and then you top it off with a clementine, as I was doing every single morning, you (BIG DUH) start brewing. Duh. That took something like a year or 2 to get “over”, even after stopping both. That brewery wasn’t about to shut down.

I’ve certainly had older-age gas but not nearly as much since banning dairy and gluten and every food I ever loved Before, and budgeting my legume intake on a tight leash.

Anyway, this recent belching has been different. Deeper. Kind of more… not sure how to describe. More insistent? Can you experience belches as more muscle-bound than normal ones? I keep coming up with “beefier”. These were belches that have been to the gym every day. They’re the great big drum at the back of the band, not all the little snares swarming it.

Beefier even than the ones you get from starting a home brewery in your stomach.

I do eat green leafies (mostly a kale+spinach+mustard+collards+chicory blend, I don’t like lettuce much) half the week, although not as much as before COVID. But they haven’t caused me any gassy problems before.

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I went through a bout of gastroenteritis last year. From reading about posts here on others who had/have it and their symptoms, and BS problems I was so happy to know what was going on. I read info on it in general online, & then looked at what you can do at home to help ease the symptoms. So I took culturelle probiotics twice a day, and chewed a couple pieces of gum after eating every time. This gets more enzymes going in the stomach to aid digestion. Seems like there was a third natural way but I can’t remember. This worked great for me, my symptoms and BS spikes & drops slowly eased & finally went away. If I feel like it’s starting again I keep my gum handy. It works for me and I wish you the very best!