Need help, I beg you. Weird gastrointestinal problem makes my diabetes hell on earth.

[bhk]

Hello to all,

This post is a little complicated and complex but I am really struggling with a particular problem that is destroying my life through my type 1 diabetes. I feel really, really desperate and I thought maybe this situation happened to someone and that someone found a solution.

So the problem started about 3 years ago but has really been worsening over the past months. It's a gastroenterological condition that makes my diabetes crazy... I weight everything that I eat, unfortunately never allow myself to eat outside, and all of the following results are evidence-based and actually factual, not approximations.

I am 30 years old, have been type 1 diabetic since I am 5 years old and I go to the gym 5-6 times per week. Have always had a tough, but manageable diabetes.

When I eat simple meals (not fatty, not too heavy in proteins nor in fibers, etc.), let's say some rice, chicken and cucumbers and tomatoes, well the carbs can take up to 5-6 hours before entering the blood. So, if I were (I was) to take insulin like recommended, a shot with the full dose and then eat, that would give a huge hypoglycemia one hour after (when insulin peaks) and then a glycemia that is slowly rising, rising, rising skyrocketting a couple of hours later. I got to understand the problem and managed it by splitting the insulin dose (let's say, 60% of the insulin, then eat, then 1 hour later the other 40%) and eat meals that are low in fiber and fat, but now it's got completely out of control. I never know when carbs get broken down in the g.i. tract will enter the blood, I am literally always in hyperglycemia or hypoglycemia.

So during these past 3 years I have seen about 30 doctors regarding the problem. Most of which gastroenterologists, as all of the endocrinologists/diabetes specialists don't know how to deal with the problem and all say they could do nothing.

Along with this big diabetes problem, let's say that the symptoms are intermittent, sometimes occur more sometimes less, and are more or less limited to generalized, chronic abdominal pain/discomfort, especially after eating, borgorygmi (exagerated bowel sounds), that I am almost always constipated (bristol stool chart 1-2) and that it is difficult to digest.

I also noticed that if I am moving even a little (cleaning the apartment, walking from the groceries shop to my house, digestion completely stops. For instance, if I eat my lunch and 30 minutes after I walk a few blocks no carbs will enter my blood and thus insulin will provoke a big hypoglycemia, and as soon as I stop walking and I am sitting (ex: in an office, on a couch) digestion resumes and sugar goes up up up up...

So here is the summary of most of the analysis/tests that I have done. I'm a medical school student which had the chance not only to see doctors outside of my school as a patient but that had the chance to talk to a lot of specialists from the inside.

There was first the suspicion that it is a gastroparesis as it's frequently associated to diabetes and these are the typical symptoms/signs. I have done a scintigraphy that not only resulted negative, but showed a fast gastric emptying. On top of that we did an R-R interval test to assess if there was an autonomic neuropathy that would explain a gastroparesis but that resulted negative.

I have done an ultrasound that resulted negative for all of the abdominal components. Just to be sure it wasn't a chronic pancreatitis hiding there, an abdominal CT scan resulted negative.

I have done 3 upper endoscopies in different settings, one with a stomach + duodenal biopsy which were negative for h. pylori and negative for celiac disease. Blood tests for anti-transaminases and anti-gliadin also confirmed negativity for celiac.

I tried an empirical therapy with ursodeoxycholic acid, which didn't help, and with prokinetics, which never solved the problem.

One of the most recent tests that I have done is a mannitol breath test which showed an accelerated transit time and an increased intestinal permeability.

Now my hypothesis are either a celiac artery compression, or a SIBO (bacterial overgrowth) associated with constipation. I have to try an empirical therapy with antibiotics for the SIBO hypothesis and I would have to do an MRI for the celiac artery compression diagnosis (as a recent ultrasound was negative for mesenteric compression but couldn't show the celiac artery due to too much gas).

In summary, my life is ****. Pure ****. I feel so handicapped, so depressed, every single thing that I have to do is a struggle. I can't walk too much, I have to be extremely precise with timing and quantities for food, multiple insulin doses, bedtime. etc etc etc. I have no social life anymore, I feel like a struggle for the people around me that care for me because of my "heaviness" and my ugly state of mind. I started to hate life, like there is some devil inside me that is just making every single basic thing an impossible challenge.

Thanks a lot to all of you guys, thanks for reading and thanks for your time.

 

[Rusty_Sweetbread]

If I understand you correctly, you have two problems:
- delayed PPG (postprandial glucose absorption), and;
constipation

Leaving aside the causes for these problems (as it could be mechanical conflict with a blood vessel, a nerve, whatever. It could be diabetes-related neuropathy of the vagus nerve. It could be any number of things.). They may be related, they may not be.

But, looking at things from a (simpler) 'problem management' perspective (with the help of your GP/specialist):
<> What would happen if you took your rapid acting insulin an hour later than you normally do, to avoid the hypoglycaemia? Or found a better balance between long-acting insulin and rapid-acting insulin to smooth out the peaks?

<> What would happen if you took a fibre supplement such as MetaMucil with the aim of normalizing your stool consistency?

<> Can you ask your GP/diabetologist for a diabetes-friendly laxative for emergency situations?

It seems like a horrible situation for you to be in, and you may have already tried these things. But as they weren't mentioned in your post, I thought I'd ask.

 

[EllieM]

Do you know how good you are at absorbing fat/protein? Would it help to eat a low carb diet so that you minimise the amount of bolus taken?

 

[hyponilla]

Do you know how good you are at absorbing fat/protein? Would it help to eat a low carb diet so that you minimise the amount of bolus taken?

I was just thinking the same thing when I read this post. The glucose release from protein is much more predictable than carbs.

What bolus insulin are you taking? If you're on fast-acting, maybe you'd benefit from changing to a short-acting one like Humulin R or ActRapid. Check out the profile curves, they peak later and stay active longer. From what you describe it sounds like it could make a difference.

I hope things get better for you.

 

[NicoleC1971]

This sounds awful and managing it is clearly taking up a lot of your 'cognitive real estate'. It does sound a lot like gastroparesis so is it possible your test results weren't 100% reliable? I have also been diabetic for a long time and whilst I don't suffer from delayed absorption of food, I do feel that although I am lean and fit, my insulin is often ineffective. I heard a great podcast recently on Diet Doctor mentioning that in type 1s the production of some gut hormones like amalyin (I think) can be impaired so accounting for some random blood sugars that of course aren't random.
It does sound as if you've been sent around the medical houses but don't have anyone taking a helicopter view of your case and giving you useful directions.
Trying low carb based on healthy fats,proteins and non starchy veg may help by reducing the insulin bolus errors whilst also helping with the leaky gut. Some people think carnivore diets can help with extreme autoimmune conditions so I'd check that out.
Also have you seen Dr Bernstein s videos on YouTube?

Sorry we don't have the medical expertise to help you here but I hope you get a few hugs

 

[teasytux]

Hello BHK,

Oh my, that's a real upsetting situation & conundrum. I feel for what you're going through as I have neuropathy & gastroparesis.

Myself, I'm Type1, 46 years since the age of 2. I lost my job in 95, due to neuropathy in my right arm. The following 2 years, the neuropathy also found its way to my legs & feet, eyesight, stomach & bowel. I was eventually diagnosed with chronic neuropathy, suffering great pain & despair that no treatments helped. I climbed the walls in agony & couldn't take. That ended up with myself doing something incredibly stupid & selfish.. the least said about really. It took many years before finding a combination that does little to relieve the pain & symptoms to this day.

The gastroparesis is a nightmare, absolute nightmare. To aid & lessen the awful effects, I learned to avoid certain foods & only try again with on a rare occasion, after years of trials. I have a low carb diet of just a few bland foods with a daily Duloxetine tablet & depend on 2 sachets of Movicol or Laxido at night as my bowel really really struggles without & stop the sachets when the gastroparesis is bad.

My consultant & I have many discussions on the gastroparesis effects on my blood sugar. I have come to terms with the fact I cannot stop the annoying swings caused by gastroparesis - it really is a nuisance though!

Reading your post, I couldn't help to see similarities with your descriptions to myself...although you've had many tests with negative results. I hope you can get an answer to help you.. I understand the awfulness of it all, affecting your life.

Best wishes to you,
Tux
keep smiling!

 

[bhk]

Thanks a lot guys for your time, support dedication. It is really, really appreciated. To make a follow up regarding your hypotheses:

- The more fiber I eat the worse the situation. Same for gluten so I have a low (but not absent) gluten diet.

- I can't rely on laxatives every day on my life, and even if it would relieve a little bit the constipation problem, not only would it not address the problem at its source, but there is no significative improvement on the "diabetes situation".

- This whole situation started about 3 years ago, following 2 trials of doing a ketogenic diet (each lasting 1.5 to 2 months), if anything, the ketogenic diet is probably a factor that contributed to triggering my whole "situation". I really suffered a lot from this diet on many ways, and my diabetes management was not significantly better than before that.

- Fat (good or bad, olive oil, coconut oil or butter) makes me extremely insulin resistant, that is why I try to avoid it and eat max 10 grams of fat per food (and also the reason why I never allow myself to eat outside) otherwise glycemia rises a lot and stay high for up to 12 hours later no matter how much insulin I inject

- I am on humalog for boluses and tresiba for long acting, which works as fine as levemir (but lantus almost killed me with heavy unexpected hypoglycemias a couple years ago so that is a big no for me).

- Has any of you tried "exclusively carnivore diets"? Seems really bad for kidneys on a long term...

- I once thought about using Humulin or slower insulins that have a longer, broader curve compared to the "fast acting" ones, but the problem is this: I am always hungry, it's difficult for me to maintain my weight and always tend to loose some. But with this situation where carbs absorption is delayed, I am only entitled to a certain quantity of carbs otherwise they queue up and can still be absorbed over almost 24 hours for a single meal (say that I would eat a huge 220 grams of carb meal). So by taking this insulin even if it seems a little more appropriate / less hassle with the multiple doses, there would still be this "queueing" problem.

- Lastly, it's worth mentioning that not only has my gastroparesis scintigraphy showed an ultra fast gastric time (but the breath test an ultra slow transit time once in the intestines), not only have I double-checked the gastroparesis component with an R-R interval test (you can google it) which seems to be even more reliable when there are false negatives on scintigraphy, do I have to tell you that when I start eating (even if it's rice, oatmeal, etc.) does my glycemia kicks in in 10 minutes not even, super fast, which makes me think again the problem is not in the stomach but in the intestines.

- So to counteract this "contradictory phenomenon" just described, the way i tend to handle things is take a first dose of insulin at time zero, then eat a fruit or something not to be in hypoglycemia, at time 40 minutes I have my meal, when I finish my meal at time 60 I go for the rest of the insulin dose that I need. But once again, this algorithm doesn't work too well and I often need to split in 3 doses as it's been worsening lately

- I should also add the fact that I have traveled for many reasons in different parts of the world for several reasons (medical school internships, jobs when I used to work before medschool, leisure vacations or visiting family and friends) and I still do travel several times a year. Even if my diet stays more or less the same (basmati rice, chicken, potatoes, eggplant and peppers... to give you a classical example), my whole situation always start to worsen 3-4 days after settling in the new country/environment. Which makes me think the "SIBO" hypothesis could be valid, but it is still hard to believe that such a huge mess is created only from a SIBO.

- By the way, I also checked blood antibodies to some bugs that could have triggered the symptoms (ex: trypanosoma cruzi, which can typically affect on a long term the g.i. tract in such a way) but everything was negative

That is a real "Dr. House" case of internal medicine. A part of me has some hope that we will find something to understand it and make things better, like they were until 3 years ago before suddenly appearing, but this hope fades away everyday, as it is really really demanding psychologically and physically just to go through everyday. Thanks again for your patience and your help. Much love.

 

[MollieB]

There was first the suspicion that it is a gastroparesis as it's frequently associated to diabetes and these are the typical symptoms/signs. I have done a scintigraphy that not only resulted negative, but showed a fast gastric emptying. On top of that we did an R-R interval test to assess if there was an autonomic neuropathy that would explain a gastroparesis but that resulted negative.

It sounds so classic gastroparesis. From what I read, gastroparesis can be hard to diagnose. You mentioned a scintigraphy, which I think the radioactive food test (???). If I have the right test, I read something interesting about that. The article said that this test is not a 100% sensitive because of the unpredictable nature of the paretic stomach. One day it could empty normally and then, the next day, it emptying really slow. (Which I thought was an interesting idea). Because gastroparesis is unpredictable, you can have several normal tests before getting one abnormal.

There does seem to be a device called a Wireless Motililty Capsule (I think it is available in the UK) that may be more accurate (????).

Another thought is to keep an extensive food, activity, insulin dosing, event log. (This may be annoying but it may reveal something too). Document when you eat, what you eat, how much you eat; time you take your insulin, when it it is in relationship to the food you've eaten;your activity level and when you were active; if you take other medications or supplements then document the time you took them; your glucose readings (and when you took them). Be specific and accurate in your times; and document any other information that may relevant. Like had headache, or not feeling well, stress, etc. Once you have done that for a couple of weeks, study and analyze it, looking for patterns. See if you can see anything. (If it were me, I would make quick notes on my phone throughout the day as they occur and them put them all together in a log later in the day/evening.)

 

[DCUKMod]

@bhk - have you had your gut microbiome looked at? Not just the h-pylori or e coli aspects. The whole caboodle?

May I ask why, if you have identified issues with gluten you have not cut it out entirely? My Endo recommends all of his AI patients go GF, and where peculiar symptoms persist, he recommends a strictly GF diet.

Having been GF for a few years now, I feel the better for it, even though I did not recognise any definite gluten related symptoms. My ANA and all other antibodies were either negative or inconclusive. I am told, not all coeliac patients present with antibodies, just as not all T1 present with antibodies. The lack if antibodies does not rule out a diagnosis.

Have you had an ERCP, colonoscopy or sigmoidoscopy? I don't notice it in your posts.

 

[bhk]

Thanks for your insights. Once again, very appreciated!

Regarding the wireless capsule test, it costs a lot of money (almost 1000 euros); I don't know if it would provide any extra information; what I mean is if the only information it provides is wether there is a delayed transit time or not, we already have the answer. If it can address a cause (such as some type of obstruction that was not seen on the CT scan), that might be interesting to do it...

I shoud also try for at least a few weeks a 100% gluten free diet and see what comes out of it, we never know.

Regarding the microbiota test, there are a few labs you can send a sample stool and they do a PCR test (to check through genes) all of the bacteria subtypes that are present and assess a balance problem. This is on my to-do list as soon as I can have the couple of hundreds that this test costs...

I asked many gastroenterologists about the relevancy of performing a colonoscopy; all have said it would not help to go further with the case, but I might eventually end up doing one just cuz "we never know". ERCP is completely useless when you can do an MRI, but it is really unlikely that I have bile ducts problems as the ultrasound and blood tests are all clear...

 

[DCUKMod]

Thanks for your insights. Once again, very appreciated!

Regarding the wireless capsule test, it costs a lot of money (almost 1000 euros); I don't know if it would provide any extra information; what I mean is if the only information it provides is wether there is a delayed transit time or not, we already have the answer. If it can address a cause (such as some type of obstruction that was not seen on the CT scan), that might be interesting to do it...

I shoud also try for at least a few weeks a 100% gluten free diet and see what comes out of it, we never know.

Regarding the microbiota test, there are a few labs you can send a sample stool and they do a PCR test (to check through genes) all of the bacteria subtypes that are present and assess a balance problem. This is on my to-do list as soon as I can have the couple of hundreds that this test costs...

I asked many gastroenterologists about the relevancy of performing a colonoscopy; all have said it would not help to go further with the case, but I might eventually end up doing one just cuz "we never know". ERCP is completely useless when you can do an MRI, but it is really unlikely that I have bile ducts problems as the ultrasound and blood tests are all clear...

"A few weeks" gluten-free is simply not enough. My Endo was pretty clear, the absolute bare minimum testing period is 3 months, but 6 is much more realistic.

I didn't identify as having gluten issues, except for a poorer than ideal bowel movements, but after going GF, a few months later, I realised I actually felt "better". Stuff just worked better.

Regarding the colonoscopy, th first call test for coeliac is a blood panel, but being antibody negative does not rule out a diagnosis, only antibody negative, plus colonoscopy would do that. There can be gut damage without antibodies, just as one can be T1 without antibodies.

 

[John B.]

6 months ago I was yoyoing back and forth with gastrointestinal issues which finally manifested as bad acid reflux. There were other issues prior to this that I had coped with for years but never really noticed because they were not limiting...namely intestinal gas bloating and facial rashes. I've never coped well on a keto diet so I implemented an alternative lowish carb diet by heart surgeon Dr William Davis...only guy to ever reverse heart calcification scores..so not an average guru. Everything cleared up after 2 weeks. Very many of his case studies sort gastrointestinal and autoimmune conditions although the thrust of his protocol is reversing type 2 diabetes. New York Times bestseller.."undoctored" protocol. I also used self hypnosis.... in UK the NHS uses hypnosis to treat IBS...check out the research..
I know Medics are unbelievers but seriously check the research. It seems to get gut peristalsis sorted out and under control. Being anxious about conditions prevents relaxation into parasympathetic state necessary for digestion...until you've been relaxed properly & rediscover and reset Base level relaxation your digestion could be all over the place. One final thing I looked at in desperation because like you i was going mad and the doctors couldnt help me...it was a program called pivot protocol...I had my first improvements after buying first module (still not bought 2nd module yet..may do if reflux ever returns)..but this guy explained origins of reflux being too little acid..not too much acid...also explained why my reflux made worse by PPI...this because SIBO IBS gases push back through stomach sphincters to cause reflux...(unrelated to H.Pylori). Armed with this knowledge I took Betaine HCL tabs with my high protein meals and digestive enzymes. If acid not sufficient to digest protein big problems being dumped into intestines...grinding to a halt. Research has also shown link between SIBO IBS and low stomach acid. The acid supplements also seemed to kill intestinal gas and bloating..when coupled with sugar elimination and replacement with 15g potato starchy carbs per meal ... thereby starving upper intestinal bacteria. After 4 weeks i dropped the acid tabs...back to my old self..but now careful about loading my stomach with random food choices or diluting stomach acid with drinks. 4 hours between meals and no snacks ..so stomach fully digests and empties. Only potatoes for carbs...15g per meal to avoid insulin spikes and gut fermentation. If i wander from my new routine i can feel reflux facial rashes and other symptoms returning. A lot here...just thought I'd throw ideas for you. I cured myself because I wasn't prepared to adopt my doctors recommendation and take PPI and acid blockers like everyone else does for decades on end. The clinical research supports much of what I've described..but you'll need to dig hard.