Gastric Emptying Scan

Type 1 and LADA
21

Thanks Trudy, I am eating small meals of only 10-15g and I have to space them out with 4-5 hours in between. Because my bg also runs high a lot of the time it is hard to eat more than 2-3 x per day because if high I have to also correct or it can go higher etc. and also then I have more chance to crash with a correction. I’m really barely eating anything now and I scared to eat. My first meal I just started crashing at the 2 hour point and I was able to control it with 1/2 ounce juice, 2 smarties and shutting off basal for nearly an hour. I think this was low day for me because I flatlined while sleeping after being high for hours. I ate before going to sleep because I was starving so that may have contributed… I if I eat and don’t bolus I can wake up very high with ketones even for something low carb.

I was eating only soft foods for a while and now I’m grinding most of my foods, just not sure what to do anymore because nothing works consistently with this disease and I’m exhausted. Now I feel bloated a lot of the time too.

I think I tried that bread when I was diagnosed but all the breads spike my bg so I just stopped trying. I have to bolus so much for them that it is more likely to crash and just not worth it.

If i eat too many x per day I have too much iob and more crashes. That happened a while back I ate some chicken and cucumber, went out to target after bolusing .5 unit and had a huge crash where someone had to help me find some OJ. Not sure if I ever figured that one out- that was back in May I think. Then I tried extended bolus for a protein meal because my cde suggested eating protein every 5 hours to stop rises, that caused me to crash later too when I ate dinner.

22

Thanks Jen, The DW has an antibacterial cycle which does that. I put everything in, pots, pans, food processor etc. Unfortunately one of the parts for the food processor, not an essential one, fell off the shelf and was partially melted in the dishwasher floor, I have to replace that but otherwise so far so good. I don’t use the wooden board, I cut things on paper towel on the counter and I don’t eat toast. If I start eating toast again I will get my own toaster and have to find somewhere to put it. No room left in the kitcheb because I have too much stuff. I will have to put up a shelf for the cookbooks etc.

23

That gastroparesis when it was flaring up could cause some rapid lows. I found using an extended bolus option on my pump very helpful in dealing with the slow absorption and spikes that would occur much later when the food finally fit your system. Also I used to work in gastroenterology. The only true definitive test for things like Celiac is to do an EGD with biopsies.

24

Thanks, I have never had a good result with extended boluses they also seem to crash me later or early. I’m just pretty much scared to do anything to different at the moment but maybe I will try that with the lower bolus doses I have been doing at some point. The problem is each time is different and I can’t tell for sure what is going to happen.

I’m having that done next week so hopefully they will be able to see what is going on and if it is celiac.

25

meee, I’m sorry you’re having so much trouble with eating, which ought to be a pleasant experience. I wonder if you’ve tried Regular insulin instead of using a fast-acting. It has helped me when I occasionally have some trouble with slow digestion.

Like you, I’m having a problem keeping my blood glucose from being too high with so many meals. I’m afraid this is the new normal for me, so I’m experimenting with snacks/meals that work. Boxed soups that we enhance are working pretty well for dinner. Best luck with your experimenting.

26

Is that cat food gluten free? My dog is grain free. Too many chances of cross contamination from a slobbery dog. Hummm…that can apply to spouses too. Tooth brushing prior to kissing is necessary!

Any porous surface can retain gluten which is sticky and hard to remove. That includes scratched plastic and non-stick pans.

We use toaster bags when sharing a toaster at someone else’s house. We have two celiacs in our house, so it is 100% gluten free, but a shared household is possible with training.

Watch for “double dipping” regarding all butters and condiments. No baking with gluten flours either. I am sure you can research this more.

You might find damage in the intestine even if you were gluten light. It is just a crap shoot as everyone heals at a different rate. In theory, the intestine can heal within weeks, but most adults take months or years to heal. The small intestine is vast (size of a tennis court if spread out) and it is easy to miss damaged patches. Make sure 4 to six samples are taken. So, if the biopsies are negative, you still can not rule out celiac disease because you have been gluten free or gluten light. It is a shame that most celiacs have to have pretty severe damage to get diagnosed. Hopefully, tests will improve in the future. Oh, there is no test that can be given when gluten light or gluten free. The exception is a Gene test, but since over 30% of the poulation carries the gene for potential celiacs, it just EXCLUDES the possibility of celiac disease.

You can go forward and act as a celiac to see if you heal in six months or so. But…you should be talking to your celiac-savvy GI about this!

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27

Oh, one more thing. I was anemic when I was diagnosed. No tummy issues at all. So, symptoms (or lack of) do not necessarily correlate with the severity of damage.

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28

I’m going to get on my bandwagon here…being a GP sufferer (having been through testing from un-experienced labs and hospitals).

The American Society of Gastro says the gold standard test is 4 hours. Less than that, you can get false negatives. The test is dependent on flair, where you are in your cycle, etc…

Regardless of the results, the symptoms can exceed the emptying times. Therefore, a negative test is meaningless if you have symptoms.

Treatment SHOULD be based on symptoms, it shouldn’t matter HOW fast you empty. There are drugs (reglan, Domperidone (don’t get me started on how to get that in the states, but it’s a godsend) that make life bearable. Diet also helps, but it is not diabetic friendly and needs to be modifed for us.

29

Thanks Trudy, not pleasant is a nice way of putting it. I’m terrified each time I eat if my bg will crash. Then it can spike high even without crashing because I’m not taking enough insulin for the food etc. or for whatever reason. I have been at 170-250 all day today after I woke at 125 and ate 10G! And when I’m not having the stomach symptoms on and off I feel weak and like I’m starving because I’ve hardly eaten anything compared to what I normally eat. I’m not sure how long I can survive like this. I tried some gf pea soup after I got out of the hospital but it spiked me terribly for hours and it had pepper in it. For a few days there bone broth was my main thing practically.

30

Thanks CL, I don’t know how I can ever be totally free of contamination in my house so I’m hoping I don’t have celiac. I hope the biopsy will show if I do have it. I will try the dishes sterilizing and see if that helps. I have been eating gluten lite for nearly 4 years now so it would seem odd that my symptoms got worse and I end up in the hospital with gi issues and bg issues/ketones after doing that?

To be honest I will never completely trust any of these tests because as we know they can be wrong for various reasons. But I guess if a biopsy shows it maybe. Even that, when I had a biopsy years ago, the pathologist thought one thing and the doc disagreed.

So far my ges was normal but I don’t trust it. Obviously something is going on for my bg to start dropping at 1./hr to 1 hours. I can’t get the timing right no matter what I do. I don’t use anything with gluten knowingly. I don’t know if my symptoms are due to gluten because I’ve had IBS for so many years now and between that and D my whole digestive tract is messed up completely now. When my bg crashes or even when I eat now I have to go not long after frequently except on the days when the opposite happens. It is never predictable.

I don’t know if there are any celiac savy people in my area although they all claim to be I’m sure.

I wish @pastelpainter would let us know about that test I mentioned, I think there is one that you don’t have to eat gluten for at all, not the gene test, but I’ll ask about that.

31

Thanks, my test was normal, but I guess I could still have gp. I did the four hour test but I fail to see how after fasting for over 12 hours and eating a tiny amount of egg whites with no insulin, how that is going to compare to eating a more normal meal with an insulin bolus. My worst symptom is the bg crashing when I eat, it is making it impossible for me to eat and to have anywhere near normal bg for more than 10 minutes except sometimes when I sleep. The other worse symptoms are the gastro symptoms and 3 x now having trouble eating, having pain upset stomach etc. and then bg spiking very high with ketones eventually at some point after.

32

Meee, it was my daughter’s friend who had the celiac test after refusing it for years as she is so very intolerant of gluten. I have asked a couple of times, but not heard back Will ask again for you.

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33

Meee,
You sound so much like me 3 years ago…all tests were ‘normal’ and no Celiac. But, from my numbers and symptoms I had a good GI dr. who went on a limb and treated me for GP, which in the end it is. It’s all about treating the symptoms. I have nausea all day every day along with the other symptoms and very poor control of my sugars as a result.

I’m like you as well, going low after eating and then randomly (as I digest) spiking high. You need to see a CDE who is familiar with GP and an endo as well. I personally, take my meal time insulin after eating, (I had to play with the timing but note that GP is progressive in some cases, so I have to switch it up, right now I do my corrective and meal about an hour later). I also split my long acting, half in the morning and half at night this has been a huge help in managing the lows, though some mornings I’m spiking high.

When I have trouble eating, I use a liquid diet, smoothiees with protein powder (rice based, gluten free), milk etc. I also use the Clear Ensure (because it is like fruit Juice the shakes are sometimes too much for me)

YOU need to keep on hand a liquid rescue product for the lows, I keep LEVEL which is a gel, nasty but it gets into my system quickly as the chewables don’t work for my digestion.

I’m not a Dr, but there are tests for Celiac, sometimes they come out normal and folks still have issues. I personally have tested negative for it (even via endoscopy) so I don’t know how that feels

Finally, there ARE medications that help make the stomach move food through (Reglan, Domperidone) and that help with the nausea (zofran). You need to work with a GI Dr. to help you. Note, I had one that was all about the testing, and when I questioned him ($5,000 out of my pocket) on what he discovered, it was nothing more than we knew before. FOR ME, that’s why I’m about treating the symptoms.

Sending hugs your way and hope you feel better soon

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34

Meee, I think you really need to consult a specialist for your gastroparesis problems, which is probably a not a new idea for you. But honestly, I think you need help right away.

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35

The symptoms you’re describing (low while eating then uncontrollable highs later on) sure fit descriptions I’ve read about GP. I hope you’re able to get some relief soon!

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36

If you have celiac disease (and I am not saying you have it), eating gluten light means you are still consuming enough gluten to trigger an autoimmune response that damages your small intestine and can affect other intestinal organs as well as your entire body. It takes just 20 parts per MILLION to set off a reaction for most celiacs (even less for many). That is smaller than a crumb!

You may just have GP that is related to TD1, but that warrants further investigation from a doctor who specializes in the area.

Sterilizing dishes is not the issue. Gluten is sticky and can be hard to remove from surfaces (one reason it is used in spackling compound and drywall).

As far as finding a celiac-savvy GI, you can reach out to a local celiac group or just read the bios and confirm with the doctor’s office that they treat celiac patients. Perhaps others here can provide some advice about find a good specialist. This strategy has worked for me.

Again, I am not pushing a celiac diagnosis. It is just that 1 in 130 of the population has celiac disease and only 80% are diagnosed. I just hate to see those people suffer needlessly.

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37

Thanks Pastel :smile:

38

Thanks CC, I will try to find someone. I guess I will just wait until I get this endoscopy done because I need to have it anyway to see if there are other things going on. I’m very exhausted and this is a lot to deal with unfortunately with everything else. I did get some gluten free cat food today at the petfood store, maybe it will help sybil who has intestinal issues, even if it doesn’t help me.

Wow, gluten in spackle? I just spackled a small hole last night but I was wearing gloves, lol. I have noticed I can get rashes/itchy from construction when those materials are exposed too.

I don’t have the energy to start scrubbing everything down so maybe I will have to move or something if I do have it? :cold_sweat:

39

Thanks Trudy you’re right. I will see what this doc says after the endoscopy and then I will look for someone else if she won’t help me. At least I trust her to find other things and to sedate me properly.

I did go to an np at a different endo today and it was a useless waste of time and a horrific experience. She said because my numbers look normal to them nothing is wrong and I need to ask the gastro doc because they don’t deal with any issues except bg, wtf??? My numbers look normal because most of the time I don’t let my bg actually crash. I don’t see how it is ok to have high bg for hours on end. It makes it impossible to eat making the situation even worse, not to mention the risk of stroke and other things.

Apparently it is ok if my bg starts dropping while Im eating and I have to run to the bathroom and start drinking juice/glucose tabs as well, shut off my basal etc. It’s ok if I flatline while I sleep and ok if I go to 250 for hours everyday because that is all normal for type 1. I got her to admit at least that it’s not normal for bg to start dropping 1/2 hr after you bolus/eat.

It also doesn’t matter if it goes to 279 with high ketones when I eat and I’m nauseous because that is not dka, you have to be at 400 for several hours before you go to a hospital, even with high ketones according to this place. Even though I was admitted to their hospital with lower bg and high ketones 4 weeks ago.

They said I should eat more carbs, I kept explaining to them that I can’t do that because then I have to take more insulin and then I will be in a much worse situation when bg drops with a stomach that decides not to work that day.

40

Thanks Jen, I hope so too. As it is I’m having a hard time functioning at all.