Gastric Emptying Scan


#41

Thanks mskdka,

For the hugs and all your help.

I have been having plant based gf, grain free protein shakes which are very low carb with my meals but sometimes even with a small meal it is too much. Tonight I skipped the shake and now I’m having the naseau/bloating/reflux pain later instead.

When I got out of the hospital I thought I was healing and then the next weekend, had pain and trouble eating etc., high bg and ketones. So I switched to soft foods only for a few days and then added in ground up foods and then some veggies ground and raw. I may need just the liquid too at times. But I always feel kind of like I’m starving on liquids only. I feel that way now too because I’m barely eating compared to what I used to eat due to fear of bg dropping and all the other symptoms.

I have the gels but I usually have juice and smarties and that seems to work for me so far. I have the gel for when I’m really low and in trouble because I know that will raise me fast. I did use some gel for one of the events before I had reduced my carbs and boluses.

I hope someone can figure out if I really do have celiac. It would certainly explain a lot of my issues.

I have taken Reglan in the past for severe reflux when I also had an ulcer I think and it did help but it gave me palpitations so I only took it once. Then it was taken off the market for causing heart problems and eventually brought back.

I hope someone can help me.


#42

I think I’m going to go crazy trying not to cross contaminate. I don’t know how anyone does this :open_mouth:


#43

I’m not anemic but I did have very high b12 on my last tests, it jumped 2000 points so something is going on. It could be functional b12 deficiency or something else like that. I also have low vit d and hyperparathyroidism.


#44

Hi Meee,
Sounds like you are dealing with a lot. There is a diet (of course there is :confounded: ) for GP as well, called ‘low residue’, which although not diabetic friendly, helps with the digestion. I know you are doing a few diets until you figure out what the true issue is, but wanted you to know.

The advice my GI guy gave me during the process of figuring out what I had was that high sugars slow my digestion (above 180) and that increases nausea. I watch my sugars, personally I find he is right (I was extremely nauseated this morning and was at 300+), it also can progress these complications. I watch my sugars, understanding that having any digestive issue makes it just that much harder to control. He also had me split my meals into six smaller meals (for me very small) which helped the nausea but was hard on my sugar control.

Nausea can be addressed in several over the counter medications and even using yoga and aromatherapy. It may help you to try something like this, until you can figure out what is causing your nausea.

The pain, mine is like I was punched and I have abdominal tenderness as well. I’ve not found anything to help with the pain in terms of medications, but I use a heating pad and mentally I feel better.

Celiac - have you had an endoscopy where they take a biopsy and test it for the Celiac. My GI needs to test me about 1x each year (making sure it’s just GP and nothing else) and he always tests for it, says it’s the best way. It was during the endoscopy that he was able to formally Dx GP – undigested food and the vagus nerve was un-responsive.

FINALLY - get yourself a good team of professionals. I have a Certified Diabetes educator and a nutritionist on mine who are both familiar with diabetic digestive disorders. It’s important to have them and it’s important that they are familiar with the digestive orders…it will go a long way to helping you feel better.


#45

Thanks so much mskdka,

I have a team but they have been little help. My cde first said when I asked about testing that you have to have 10 years of uncontrolled bg to have gp. I doubt that is really true but I know there were several years at least where I wasn’t diagnosed and never had an a1c. She knows about my ibs and other digestive issues but nothing she has suggested has helped and she said she is frustrated but doesn’t know what is going on. My doc is useless if I even try to discuss digestion he gets a look of disgust on his face.

This other clinic is even worse and I won’t be returning there again- I told the doctor I saw that and she said she would get my records but I just left without even getting them. The original doc I saw after my hospital stay wasn’t there. I was thinking to switch to her but this practices uses np, so you will never really see your doctor probably, typical of all the doctors associated with this hospital. In addition, she never does cbc in her blood work, I asked her about this and she said it isn’t related to endocrinology! wtf??? She also said, when I questioned why she wrote generic hypothyroid on my diagnosis instead of hashimotos, which I have and tested positive for antibodies for, hashimotos isn’t hypothyroid.

I know also that high bg obviously affects my digestion, I get more constipation when I’m high for hours, more dehydration etc. Also usually when I’m constipated is when I have my worst lows for the most part because the food just doesn’t get into you as quickly. Lows cause having to go/runs a lot of the time.

I can sometimes see a connection between the nausea and highs but this morning I was nauseous and was in normal range. I had trouble eating but kept eating and eventually it resolved. My bg however started dropping not terribly. I had waited till I saw a rise until bolused and ate my food first etc. But if I hadn’t it would have been a crash for sure. Now I’m at 220, after eating a 10 g dinner at a starting bg of 190- where I eventually spiked to after my first meal. 180 is the level where I start to feel uncomfortable too, feeling of pressure, neuropathy pain etc. and higher I just feel horrible most of the time and worry about strokes etc.

I may try that diet once I see what happens with the endoscopy, but I have a feeling it will be awful for my bg. I skipped my shake tonight because sometimes I feel they upset my tummy, but I will have one for my last meal. Basically I’m just taking tiny boluses without adding in my veggies carbs etc. which aren’t really covering the food most of the time.

My pain is less severe than yours and comes and goes, sometimes worse at eating. The reflux pain can be quite severe. At one point when I had an ulcer I had to take heavy duty stuff. The only otc anti nausea med that works is emetrol I think? I have some zofran but I’m saving that for dka nausea plus I read it can cause constipation which I want to avoid. Are there others? I’ll look for them too.

I’m having the endoscopy friday and then I think I really have to start looking for a doctor who can help me. My cde said she could refer a gastro doc, I hope they may know more about diabetes related issues whether it is gp or not or my ibs and or some other issues too causing these problems. I will ask this doc about looking to see if it is gp as well as celiac. I’m fasting after midnight with juice/clear liquids allowed so I assume if they still find food in there something is wrong? I will ask about the vagus nerve too. I have other symptoms of possible vagal nerve issues which I’m wondering about too such as extreme dizzy spells which don’t seem to be related to bg.

Today was a bit better fortunately although I’m high again now. Have you ever tried 2 bolus to eat more or is it just impossible for you now? My cde and the np suggested that but I’m scared that will drop me low. I have been doing that all along though if I spike too much but I had stopped. Then I did that the past two days for the spike plus increased basal to try and stop an extended high I couldn’t stand any more. I don’t want to take a significant bolus though too close to the next one with the lows and I can’t really eat that much more than I am anyway at this point.


#46

Hi Meee,
Didn’t realize it was a GP ordering the tests…YES get a GOOD GI guy, they should be up to date on your issues. YOU do NOT have to have diabetes 10 years to have GP the literature says that in 10 years a large percentage of diabetics will develop some digestive issues (or something to that effect) but it can happen anytime. I was diagnosed 3 years ago, six months in I got GP. My first team was awful, told me it was ‘in my head’ and I looked good with the weight loss - it was terrible, I knew there was something wrong and did a lot of research. Lucky, I found my GI guy who was willing to go on a limb for me.

Celiac or GP or both, it’s hard for the Endo as sugar control (as you experience) is most difficult. YOU need an endo who will work with the GI (look to some of the teaching hospitals, they usually have GI clinics where they have both). There are websites for GP that offer lists of GI Doctors…sure there is the same for Celiac as well. We keep a larger range on the acceptable sugars for me. I’ve looked into the CGM and my insurance is processing the request. The goal is to hit the high numbers on the head. I use a fast acting, Apidra (I probably spelled that wrong and I’m too lazy to look at the pen :slight_smile: ) which goes into my system in 15 min. When I test high and on the upswing (usually for me about 4/5 hours after eating) I hit it then…I can generally get some control, but work closely with the ENDO when numbers aren’t in line…

WHO is doing your Endoscopy if not a GI guy, your GP? That doesn’t sound right to me, a GI knows the right areas to biopsy for things and how many to do…

Don’t feel too bad if they don’t have answers for you right away, GP can ‘hide’ and is sometimes a Dx of exclusion. The endoscopy results take a few days to weeks to process, depending upon the location of the lab…they can only talk about what they saw during the scope…my current GI gives us the details of his findings … but we work closely with him at all times…

Search the web, GP is part of NORD in the US, which is a site for rare diseases. I’m one of the ‘lucky’ ones as for me there is no flair, it is a constant companion. I tell people it feels like I have the 24 hour flu every day…

Good luck on Friday and let us know what the find…


#47

Thanks Mskdka,

I had it done today and it is at a teaching hospital. My GI doc did it, she did my colonoscopy 2 years ago and all went well with that except for the terrible prep.

The problem is you never really see your doctors there so I need to get new doctors. My gp is there and she is terrible- rude and nasty to me a lot of the time. I NEVER see this woman unless I schedule a physical and the last two x she told me that it wasn’t a long enough time for a physical and kept asking me who scheduled it as a physical. She walked in asked why I was there and acted as if it was my fault someone made the wrong appointment. The endo office there is hopeless, the np I saw was rude and gave me pretty much 0 help as I stated above. My own team is useless too, my doc as I said keeps telling me they can’t help me and the cde although I think she wants to help says she doesn’t know what is going on. The gp says she won’t treat anything like thyroid etc even if my tests are abnormal and endo tells me it’s all in my head when I have symptoms and then I test positive for something like hashimotos after arguing to get a test done.

I saw the gastro np first, she scheduled the tests and I saw my doctor today only at the test. She did seem to have some idea of what was going on with me so maybe she talked with the np. They found some irritation and did biopsies in the duoedenum and an upper area near a small hiatal hernia, which is what I had last time. I don’t think they biopsied the small intestine though because that looked ok. I think that is usually what is biopsied for celiac.

The test was good, although I felt horrible due to bg spike from 100 when I woke up to 220 before the test. The anesthesiologist said to do only half my correction before but it did start dropping me. I had reduced basal when I woke up for 2 hours because the day before I went hypo when I got up to eat and hadn’t eaten for a while due to a high.

I was totally out with propofol and thought I was dreaming- it took ten minutes but my stomach and throat are killing me now, I hope I feel better tomorrow. I don’t remember feeling this bad the last time even with being wide awake and vomiting pulling the tube out etc and having vocal cord damage after but I guess that was a long time ago and I do remember feeling so bad I refused to do another one right away with a better gi doctor. I may go to him and see if he can figure this out because he is an internist and a gi doc and he treats lots of people with diabetes. Unfortunately he doesn’t take my ins and does the concierge thing so I doubt I can afford him for too long.

I will wait and see what the biopsies say and if this doc has any good input. I told her I wonder if they will show if I do have celiac because I have been gluten lite for a long time. I asked her about the vagus nerve test you mentioned and she said she can’t see that on the endoscopy. Did you have another test for that?

My bg is going up after my last meal about 3-4 hours after, is that typical for you? I’m so sorry you have this all the time, that is awful, I’m glad the apidra helps you. 24 hour flu is awful. I’m used to having attacks of IBS at unknown times.

I tried apidra but it seemed to drop me low. Did you have bad lows too when you were eating when this started? I’m so scared of the lows now I’m not bolusing enough for food and I’m scared to correct highs because I never know what will happen.

During my last upper endoscopy they biopsied one area and the pathologist thought it was pre barrett’s but the doc disagreed. This time the esophagus looked ok. I think that was true last time too and the inflamed area was in between the two where the hernia is now maybe.
After that I refused to do any of those tests again and I ate chicken, rice, lettuce, granola bars and water only for nearly a year, maybe some yogurt too along with prilosec. The reflux was really bad then and I had had one ulcer and I remember my stomach just not digesting anything. I had a piece of pizza totally undigested come out of my nose and stomach or something, lol.

How did you find your GI, at NORD? I will look for that, maybe there is someone else in my area who can help me hopefully. I can’t envision living this way for too long.


#48

Duodenum is part of the small intestine. It is the first part. That is where they generally do biopsies for celiac. You can’t exam large portions of the small bowel during an EGD or colonoscopy because there is so much of it and it is so compacted. For EGD’s small bowel biopsies are done in the duodenum, and in colonoscopies, the small bowel is biopsied in the ileum. If anything abnormal shows on your biopsies they may do a capsule endoscopy, which is a capsule with a camera on it. You swallow the capsule and wear this equipment that transmits the images from the capsule to the equipment to be downloaded. It will view the entire small intestine. Being gluten lite or free can sometimes make celiac difficult to diagnosis as the small intestine starts to heal itself. If you suspect celiac you really shouldn’t change your diet until after you have had an EGD and biopsies because decreases in gluten or being gluten free can alter the results.


#49

I grieve with you on GP issues. It is a mystery like no other. I have had issues with all things gastric from birth and was not diagnosed with T1 until 19. Chicken before the egg… (Get it… Egg study!!lol😜).

I learned one AMAZING thing from my first GE scan… I was allergic to eggs!!!

The scan reveled absolutely no digestive capacity whatsoever! It led me to see a functional medicine specialist (MD) and we started with a blank slate through an elimination diet, stool and lab tests.

Learning trigger/inflammatory foods was the most healing and beneficial process for both my GP and diabetes. The unexplained bs spikes from low carb things like eggs were driving me literally insane and into deep depression. When I leaned that these spikes were stress reactions from my body not knowing how to process certain foods…
bs control improved 1000 fold and my giant round GP “pregnant belly” nearly vanished if trigger foods Avoided.

The bloat of my GP was so horrid, it was overtaking my life. I was becoming isolated, frustrated and depressed. Looking at food through a different lens other than diabetes (carbs) has been the single best medical piece I have ever encountered (ok maybe I love my CGM too…!)

Sorry I rambled! I understand and feel what you are going through. Message me any time if you ever want to chat!
Hugs,
Cynthia
P.S. 4 hour study = sa like!! :money_mouth_face: Yuck!


#50

Thanks Kitkat2 for all the info,

I read that online last night and now I remember reading that in the past when they thought I may have celiac but I had forgotten. The nurse that took care of me in recovery said they didn’t go into the rest because it looked normal but I think your explanation is correct. You know I was never sure about whether I have it and at my last biopsy years ago, when I was still eating gluten, they said she’s pulling the tube out again when they tried to go into the small bowel/duodenum and stopped at that point. I think they took the biopsy higher up, I could feel them doing it too. Which they later tried to tell me wasn’t possible but let me assure you it is possible.

It’s a bit late in the game to talk about not changing diet before all of this because I did change my diet to gluten lite at least not long after my type 1 diagnosis- no way to change that now. I really don’t want to start eating gluten again to get a correct diagnosis. With how severe I am now I can’t add that in.

So I hope they can give me some kind of definitive answer here from what they did. More importantly I hope someone can help me figure out how to eat and manage all of this. I had a lot of nausea/bloating/pain after dinner again and bg dropped. I think I ate too much and added in too much solid food. It could also be recovering from the endoscopy too since I’m still having more pain overall.


#51

Thanks Cynthia,

Wow, you have been through a lot. That must have been a horrible way to figure out you’re allergic to eggs :frowning:

I’m glad you found someone who could help you figure this out and what to do.

I have been to many doctors over the years and no one has ever really done anything to help me. I had to stay on the acid reducing meds for a long time and each time I stop everything gets worse. I don’t have the actual bloating when I get bloated internally, it seems to be an internal thing and my stomach just shuts down, especially when constipated but this is much worse. I have never been able to pin down specific foods for any lenght of time although at times some were obvious problems like wheat and then at other times they were not so bad.

I’ve lost 14 lbs in 3-4 months and I barely have a stomach now. I’m starting to look like a skeleton to me although I’m still a healthy weight and my muscle mass is wasting again like when I went into dka.

I will probably want to chat with you at some point when I feel a bit better. Thanks :smile:


#52

I hear you and sometimes GI issues are just a mystery. Mine have resolved SOME since getting my gallbladder out however not entirely. I’ve found I can’t eat beef for whatever reason. It just sits in my stomach, get horrible belching, nauseated, vomiting, diarrhea for DAYS that immodium wont even stop. Not fun. If I don’t eat beef I overall don’t have to many flare ups. I’ve had some periodic attacks of gastroparesis, but not so much in a really LONG time. i just basically only use raglan when needed. Haven’t really needed it in a couple of years. Hope you either find some answers, or eventually find some way to treat or lessen the symptoms. GI issues suck.


#53

Hi Meee,
JUST a thought here, but I scanned through and I didn’t see a list of meds you are on…You wouldn’t by any chance be on Victoza or Bayada would you? SOME medications slow the emptying of the stomach …


#54

yes I hope so, can’t live this way much longer… I have the lows a bit better controlled now but only because I’m eating tiny meals with low carbs and not bolusing enough for it I think. So my bg is high for hours and hours a lot of the time. I’m still having a lot of increased pain and bloating etc. from the endoscopy I think. The only good thing is I don’t feel starving all the time lol. But last night I was very hungry and had to add in an extra protein meal when I hadn’t planned it. I pretty much never eat red meat. Only chicken and sometimes fish.

I’m grinding up most of my food now too. And still having the shakes when I can.

How did you get diagnosed for gp? Forgive me if you mentioned that already. If immodium won’t stop it it must be pretty bad, that is awful. How did you figure out it was your gallbladder?

I remember getting very, very sick in cancun and taking lomotil which did nothing for the runs at all, then someone there told me it was dangerous and caused low bp. Eventually when I came back I had severe stomach cramps, I went to a clinic and they refused to give me anything because tests were negative. My friend’s doctor gave her something and she got better. Then my friend’s father who was a doctor gave me something and in a few hours the cramps started to diminish. I already had ibs then and whatever I had from that trip made my whole system worse I’m sure. I don’t travel anywhere where I can get sick now, it’s not worth it.

I’m still living in terror to take enough insulin because I don’t know when gp or whatever is going on is going to reak havoc again.


#55

Hi mskdka,

Thanks! No I’m not on those meds, I’m only on insulin. I don’t think any of my other meds cause slow gastric emptying but I will ask about that. Unfortunately I can’t stop them so not sure what I will do if they do.

I was eating a lot of prunes for 3-4 months after osteoporosis diagnosis and at first it seemed ok and it helped my constipation but then my stomach was affected so I reduced them. Then when all of this started I cut them out, or maybe I had cut them out to the point of only 1-2 per day. I know you can get dependent on them if you eat large amounts to go due to the sorbitol. I wasn’t eating a lot when everything got worse though. They are such a great snack but I’m scared to eat them now- I still have some in the fridge.


#56

I had an EGD which was pretty non telling, but it was the gastric emptying study that showed some delay in emptying. As far as my gallbladder, I was CONVINCED it was the gp acting up and my PCP wanted to be sure before and rule out other causes before prescribing me reglan. It has been a REALLY long time since I had any kind of flare up. I had an ultrasound of my abdomen and it showed some gallstones. I was persistent I didn’t want to have my gallbladder out because I was convinced it wasn’t the problem. There wasn’t many gallstones that was seen, and my symptoms was just like my gp. I also had some other testing and another gastric emptying which showed my stomach emptying at the time even slower. So my gastroenterologist put me back on reglan, and it just didn’t really resolve the problems much at all. I started to have pains like someone was stabbing me in the right side of my rib cage and when I was reviewing symptoms related to gallbladder problems I’m like OMG that HAS to be it. Made an appointment with my surgeon, who had done some minor surgery on me a few years earlier, he looked at my US results and he’s like lets take it out. I wish I had done it much sooner. Some people can have really bad dumping syndrome after having it out, like get hit with sudden and fast diarrhea, but not so much for me…lol unless I eat beef.


#57

I wonder if I should get a scan too? I will ask the gastro doc when I see her. my gastric emptying was normal but I don’t trust it, it can be different on different days and you’re not even eating a normal meal etc. Today I was crashing 2 hours after meal even with all the measures I take, 156 arrow straight down, so I shut off basal for 15 minutea and waited to see if I needed sugar - it went to slanty arrow, then leveled at 149. I could tell from my symptoms It would have been bad if I hadn’t done that but fortunately I waited it out this time before glucose. But 1-2 hours later or so spiking up as usual.

Wow, I do not want to have bad dumping syndrome, sounds awful, I already have that from ibs at times and from all of this when I crash.


#58

Bernstein believes that the emptying scan is a “snapshot” and can repeatedly miss gastroparesis. He recommends the R-R interval study as a more reliable way of identifying damage to the vagus nerve (which is the cause of gastroparesis).


#59

Unfortunately this is an example of a disconnect between Bernstein and the rest of the medical community. They do not use R-R to diagnosis gastroparesis. I’ve been seen all the way from my PCP, to universities, to Mayo Clinic and you bring R-R up and they look at you like you have two heads.


#60

I think there is some variables in gastric emptying studies too. I certainly do not have symptoms of GP all the time. However when my symptoms have been flaring up, and I’ve had a GP scan both have showed delayed emptying to varying degrees. I have a non diabetic friend with GI problems of unknown causes as well, so it’s not just us diabetics who make difficult patients. I think a lot of GI diagnosing is simply elimination of things it is not.