A food diary with corresponding post meal BG’s can help you identify the culprits and adjust accordingly.
Your questions are for an endocrinologist. Not a non MD. People here are wonderful listeners but I doubt licensed MDs.
Hi Karol,
Thanks for your feedback. My experience has already shown, as has listening to a number of other people w/ T1D (e.g. ep. 216 of the following podcast: Juicebox Podcast: Type 1 Diabetes), that licensed endocrinologists actually may have very little understanding of the ins and outs of how T1D works w/ respect to insulin needs, and may give very poor advice which, if followed, would leave a patient w/ overly high or too low blood sugars. Endocrinologists who have T1D themselves, or who care for or live w/ someone w/ T1D, will likely have a much greater understanding than someone who just studied a textbook and gives standard, cookie-cutter advice to every patient (like many doctors do).
Getting feedback from people w/ experience w/ this disease is what these message boards are for. Obviously being attuned to your own body, taking into account what medical professionals and professional medical boards say, and using common sense, are also required in balancing all of the info that can be thrown at oneself (regarding anything in life, but especially a diagnosis like T1D that requires constant self-management).
So those are my thoughts, at any rate. Thanks again!
1 Like
I am sorry your experience with endocrinologists have been so poor. I have had the opposite experience. I have talked with many MDs not licensed endos that are not schooled in insulin needs. Hopefully you can find a competent endocrinologist. Thanks for your view.
Welcome. And, to echo and add some thoughts…
- They seem cumbersome, yet insulin pumps can really be freeing. One feature that came to mind is the dual wave/combo bolus where you can basically set a timer and stagger your bolus insulin. For example, if you are eating a high fat vegan nutter butter meal :), you can deliver 2 units of insulin with 0.5 units for the first hour and 2.5 units spread across the next 3 hours, etc. It can also keep track of all of the “math” of insulin on board and if you need varying ISF’s and IC’s throughout the day, in addition to the well known varying programmable basal rates.
- From my own life, I am finding intense food sensitivities that play out glycemically. Rice, pure carb rice with no fat, will require about 5x’s more insulin and spike me 5 hours after eating it. Carb-free greek yogurt and other dairy does the same. This weekend it happened when I licked a brownie batter spoon to see if I could get away with cocoa. Maybe see if there are any food patterns, even if they do not follow the typical guidelines, that cause your delayed and severe spikes in glucose.
- You are likely still finessing the basics, and accounting for any lingering Honeymoon Phase of insulin production, yet you may like a Symlin like product. It dramatically reduces mealtime insulin, yet I am uncertain if it will lower your glucose too much in the initial hours after your bolus. You may find that you don’t need to take a bolus of insulin if you have Symlin, or something like it, and a lower carb lifestyle. The vegan I knew was very into Fruit Loops, so who knows?? :). It also really curbs hunger. Which for me, is excellent.
Good luck…and I’m going to look up the additional tests you completed. I was such a resilient/hearty/unaffected one for so long, these past few years are trying to make up for lost time. No bueno. Good luck!
I too have had very good endos who are quite knowledgeable although they do not have diabetes themselves. Having a physician who can relate from personal experience could be ideal, but the numbers make that unlikely; so the key is to find one who is willing to sit down and work with you to achieve your numbers and goals. Endos treat a variety of medical conditions but may have an area of specialty. One who is board certified in diabetes would be best.
As you’ve found, management of diabetes involves periodic “tweaking” or adjustments; so while a doctor’s recommendation may not give you the result you directed or hoped for, it may not (probably, hopefully does not) mean they don’t know what they’re doing but rather that they’re working cautiously to help you get where you want to be. Your feedback will help them fine tune the tweaks; and with experience you should be able to make them on your own.
Thanks for the info regarding pumps. I’m still at the point right now where I want to try to see how good I can get my management using multiple daily injections, but will keep pump info in mind as this may change over time. For higher insulin meals (which for my body is more than 5 units) I split the dose (otherwise I go hypo) and do a second injection after the meal when my numbers start to rise again. So I see how that pump feature would be really helpful. (Just as an aside - oh how I love nut butters, nuts, seeds, tofu, tempeh, seitan - what wonderful low carb things! For breakfast I have a bowl of nuts and seeds and don’t need to bolus at all - although about 50-60% of the time I do have to use a bit more insulin for lunch to bring down a modest rise from them. Again, continuing to work things out and tweak…)
I have totally found food sensitivities, and indeed noticed this almost as soon as I started insulin, and the patterns continue. For me wheat breads especially cause my glucose to go high, so I count these carbs (as well as carbs from processed foods like tortilla chips) as 1.5 carbs. Still trying to work out the numbers - maybe 1.75 would be better. Anyway it’s really helpful to know that you too can spike even up to 5 hours after a meal, and that this isn’t necessarily abnormal. My attempts to remedy this, for me, are going to continue to try to get my bolus timings (and of course dosage) better, keep on the lookout for patterns, and see how various tweaks may help prevent that late rise.
Yes still finessing. My problem is I want perfect control NOW… but (as one learns) getting better at managing T1D takes time, the important thing is gathering your data, doing analysis, and doing the best you can going forward e/ day, w/ a positive attitude.
Thanks for tip on Symlin, and for your response - it’s much appreciated! Good luck and happy insulin-ing to you as well… 
Hi Becky, I use a pump now, but before that, I was injecting Lantus. At a certain point, my Endo decided I wasn’t getting good 24 hour coverage. She had me split my dose, and inject twice daily. It helped me knock down my late day highs. Also, breads, rice and pasta have a lagging glucose delivery. It might be a factor. And, as others have stated, talk to your Endo
before making changes.
If you have access to one, you might attend a diabetes education course. You talk to diabetes health pros, and get to talk to other T1’s. I’ve been T1 for 53 years, and found it very helpful.
All the best to you.
For anyone interested in the issue of meal spikes, pre-bolusing, and how to minimize spikes, check out ep. 217 of the following podcast (thanks again to Leeleemo for this suggestion!): Juicebox Podcast: Type 1 Diabetes
This ep., and the podcast generally, has helped me a lot to, first, know that what is happening to me is normal despite never finding anything about this stuff on diabetes websites or from my endo (not that I’ve had a lot of experience w/ my endo yet, to be fair, but for ex. twice I’ve emailed her a question and her response is either “I don’t know” or a copy-and-paste from her diagnostic manual, rather than personalized info based on her experience w/ other patients).
Good bolusing = correct TIMING + correct AMOUNT. So for now I’m working on the theory that my large post-meal rises, even hours later, are issues having to do w/ these two things (seems a pretty reasonable an assumption, in hindsight!). The issue of carbs “running away from” insulin in particular is something I have thought was happening, but could never find any info or confirmation on, and now I know that yes it’s a thing and I should have taken that insulin sooner (for ex.)…
A few more thoughts…
1). I suppose almond butter can be enjoyed without a fistful of baby carby carrots
2). I am newer to realllllllllllly trying with the kinds of protein I still digest well. Prior to this, I remember manly men mentioning that their blood sugar would spike quite high around 2 a.m. from a verrrrrrrrry thick steak. It’s something about metabolizing the fat, even though there’s no carb. I would think the same would be true of nuts and seeds, like you are finding with needing a higher lunch bolus after nuts and seeds for breakfast.
3). This is basic, yet with the wheat reaction, many T1’s of course have celiac with the clustering of autoimmune conditions. That apparently isn’t true for me, yet I adhere to quite severe food restrictions according to several protocols. Except this past weekend and slightly today…brownie batter licking and bacon!
3). Some places initiate patients on IPT, not MDI…yada yada yada numbers more numbers…and they just do better. Most adults can handle basic math. The principles are still being learned, yet more precise and accurate tools are being used when using pump therapy. A “healthy” pancreas doesn’t produce a flat basal of insulin like a Lantus shot. That’s really the power of the pump–its ability to go down to 0.025 units of rapid acting insulin per hour, that you can adjust for at any half hour of the day. I’m sure you know that. Yet, after starting MDI while being an “A” college chemistry student and volunteering at the hospital, I was beyond overwhelmed, frustrated, and a complete disaster trying to manage my life on MDI. A pump, as much as I fought every endo and CDE in town about it, and then left to another town for care, was truly life changing for me. I now need something that kind of powerful of a change in my life again. Maybe someone will mention it to me in return on here. Hopefully it’s not to do with my adrenal system…I googled the tests. Good luck. Enjoy Symlin if you try it. And, I am holding tightly to almonds digestively and wanting all of my seeds, beans, and nuts back
Hi @BKN480. I just wanted to say, while pumps are great and some of us would not want to go back to injecting, many people do quite well on shots - and there’s a lot to be said for “going old school” of you’ll pardon the term (which isn’t quite accurate). Anyway, don’t feel pressured if you find shots work for you. It will take some time to find out.
Thanks again for info and thoughts. I am sorry you are having issues w/ food allergies - that is really annoying and must make diabetes management 10x harder. As far as I know I don’t have food allergy issues, so I can’t offer you much advice, though I wish I could. Of course a standard response is to say, “see some docs” - e.g. not just your endo but maybe a rhemuatologist who specializes in allergies, or perhaps an ENT (since they deal w/ allergies as well). It’s usually worth at least seeing what they say since it’s possible they’ll find the culprit and be able to help. I suppose you could also try splitting your bolus so that some of it kicks in later when you have that later spike.
Anyway I hope you find some answers!
Thanks Becky. Ya, it’s more than food allergies. Maybe more like trauma to my body in addition to allergies, etc. The gastroenterologist isn’t overly concerned after the testing that showed I won’t die from cancer. And, the primary care provider isn’t seeing it as urgent when I asked about seeing an allergist outside of nasal congestion. I am in the care of an Ear, Nose, Throat (ENT) specialist, too, yet I had not thought of asking them about digestive sensitivities. I am doing my sinus rinse faithfully from their suggestion on nasal allergens, though :). A rheumatologist may be in order as it has almost felt like what I imagine rheumatoid arthritis to feel like at the height of its pain, complete with peripheral swelling to the degree that I couldn’t even fit my feet into my regular sneakers. More poignantly for here, my wrists were so “frozen” and aching, as were my fingers, that I couldn’t even open my test strip vial. I did a crazy biting off the lid and pouring out of strips maneuver. Crazy intense for an otherwise quite physically healthy, athletic, sort of resilient T1. Thankfully, I do have a food list patched together. It’s quite restrictive, yet was powerful in reducing what I presume was inflammation in me. That may be why there is less concern for me. When I bring up my sensitivities, I am now at least acknowledged, yet also told, well then don’t eat that. Things like not eating vegetable oil make that dicey for enjoying any kind of more normal life with restaurant exposure, etc. It seems to be getting less intense, though, if I only expose myself temporarily to harmful items. Thanks again for the idea/reinforcing a previous suggestion.
Hi @mamamaegs. I met a woman a few years ago who had some very severe food sensitivities/allergies. As I recall from her desctiption hers were so severe she literally could not eat out and had/has to prepare her own foods. Even minor ingredients in a list of items could cause an adverse reaction - I think she puts us to shame when it comes to studying labels.
All of that is to say, she was able to find her triggers and determine what she needed to do, so hopefully the same will be true for you.
Thanks. The ground work was already laid for me with a few diet protocols that I patched together. Sadly, the reintroduction phase hasn’t gone very well, though. The restrictions were supposed to be for only 30 days, and it has been years. I wouldn’t be so bothered if they were restrictions from unhealthy, or even higher carbohydrate food. But, cauliflower? Onions? Beans? Greek yogurt? Chicken breast? Dextrose, as in glucose tabs and dextrose IV’s? Those seem silly to be avoiding as a T1. Yet, I have my list of about 20 food items. At least there’s those, I suppose, yet I’d gladly take a medication or surgery for a more normalized and safe experience Back to the newbie, though…I thought some of her odd glucose patterns might be due to food sensitivities outside of the classic celiac autoimmune clustering type.
Yes sounds like a potential rheumatological issue (no expert here, of course). Unfortunately there are so many issues that can plague our bodies for which the medical community, or at least the majority of doctors, have no clue what the causes are. When causes are known, and especially treatment, modern medicine is amazing (I wouldn’t be alive without it, not just w/ T1D, but w/ having no thyroid due to oblation in adolescence). It’s when the diagnosis is unclear that people really struggle. My sis has a lot of systemic issues for which she’s never been able to find an answer to, let alone much relief, so I sympathize. (I also have chronic neck issues which have been chalked up to Ehlers-Danlos syndrome (and this may indeed be the cause), and which significantly affect my daily well-being, but which there’s no answer to in terms of treatment or possible remission - anyway I still consider myself pretty lucky health-wise, considering).
On the other hand, sometimes there really is that doctor who is like, “yeah could be this,” and a diagnosis is made and relief (hopefully) follows. You never know if some other doc won’t have an answer w/out trying. The key is to try and not waste your time w/ ones that have bad reviews/poor record/poor credentials/etc. Travelling farther to one that is highly respected and knowledgeable is a pain, but perhaps another option. Also, wierd issues can plague the body and then disappear at some point, w/out ever knowing the cause. Anyway I hope again you get some answers and/or relief in the near future…
Oh just saw this - I will keep food allergies in mind. Right now I’m testing the theory that it’s a bolus timing + amount issue. Will see how things go…
Thanks again for the input. Yeah I agree - my desire right now is to try and figure this out with MDIs. If a pump seems like a better option in the future, I’m open to trying it at some point. But if MDIs work, I’ll stick with that (for now at least)…
Hi Paul, thanks for the input. Yeah from my (limited) experience, it sems like esp. breads and pasta have that lagging glucose delivery. Do you know why that is? Because it seems counter-instuitive, given that bread is (supposedly) high glycemic, and even pasta and whole-wheat breads are medium-glycemic. So why a spike/rise many hours later??..
Thank you for the acknowledgement and encouragement. Happy you are in good medical hands yourself!