In the fall of 2003, I had a gastric emptying test done to confirm that I had gastroparesis. Gastroparesis is delayed stomach emptying due to nerve damage in the stomach. The results did not come as a surprise to either my doctor or myself because I had tests done prior to the gastric emptying test that showed I had food in my stomach even though I had not eaten in over 12 hours. What did come as a surprise to me was the lack of understanding/knowledge by doctors in managing blood sugar for someone with gastroparesis.
With gastroparesis, blood sugar can bounce all over the place because if your insulin hits before your food starts to digest, your blood sugar drops. You never know when your food is going to start to digest and chances are, you don’t have insulin in your system to cover it when it does. Even though doctors knew I had gastroparesis, I was still treated as though I must be doing something to cause my blood sugar to bounce all over the place. Once when a doctor was criticizing me, I said, “tell me what to do, I will do it” and I was met with blank stares. I was in the hospital for a week, and as usual, my blood sugar was bouncing all over the place. My last day there, the doctor told me that my blood sugar baffled him. I said “welcome to my world.” Although he did not help me, he was the first doctor to actually believe me that I was not causing it since he was controlling both my insulin and diet.
I talked to someone on a message board that went to the Mayo Clinic. She was told that with gastroparesis, she would never be able to get her A1c’s below 7. I know that is not true because I have done it – my A1c’s have been consistently below 6 for the last two years. You would think that if anyone would “get it,” doctors at the Mayo Clinic would get it! Like me, she was not offered any advice on how to manage.
Besides the lack of information about managing insulin with gastroparesis, most people are not even given information on what kind of diet they should follow. I was very fortunate in that respect because my gastroenterologists’ had a gastroparesis diet on their website. You can find that diet at www.gicare.com, just click on “Diets” to take a look at what kinds of foods are off-limits with gastroparesis. I was also fortunate that my PCP at the time suggested using Glucerna – which is a liquid shake fortified with vitamins and nutrients that we need. I have recently switched to Boost Glucose Control. I don’t know if Glucerna changed something in their formulary, or the digestive issues I am currently having because of an out-of-whack thyroid is causing it, but Glucerna and my stomach don’t get along anymore. A liquid diet is a major staple in my diet and I buy it by the case.
One note about Glucerna is that it contains both soy protein isolate and soy lecithin. Boost only contains soy lecithin. A lot of diabetics also have thyroid problems and soy can create havoc with your thyroid. Isolates are faster absorbing so it is better to avoid soy isolates if you have thyroid problems. There is even concern that soy isolates can actually cause thyroid problems. I don’t want to get into a big thyroid discussion here, but here is something interesting to read if you are interested.
Your stomach is not normal and you cannot eat like a normal person. If you want to get your blood sugar under control, you need to accept that fact and quit trying to eat foods that are difficult to digest – otherwise, you will continue on the blood sugar rollercoaster. I know the diet is boring. A lot of the foods on the diet are also not blood sugar friendly so you need to skip those. I also follow a gluten-free diet so there are not too many foods left to pick from when you start crossing things off the list! Don’t look at the diet and think you have to eat stuff loaded in carbs – I eat about 90 grams of carbs a day. Although that is not the Bernstein-recommended diet of 30 grams a day, it is not a high-carb diet either.
People with normal stomachs that are opting for tight control split their mealtime insulin up when they are eating hard to digest foods. People using pumps have an extended bolus feature to handle their meals. Why wouldn’t a person with gastroparesis split their mealtime insulin up to try and match digestion? That doesn’t sound like rocket science to me but that was never suggested to me. The only thing that doctors ever suggested to me was to wait until after I ate to take insulin but that didn’t work either. As soon as I started splitting my insulin up to match digestion, I saw a huge improvement in my A1cs.
A great book for managing insulin is John Walsh’s Using Insulin. This was not written for gastroparesis but he has some great tips on insulin usage. He also wrote Pumping Insulin for people on pumps. Another book that people recommend is Think Like a Pancreas by Gary Scheiner. I haven’t read it but it is my understanding that it is not as technical as Using Insulin but still has a lot of useful advice.
I also switched my fast acting insulin to Apidra. Out of the current fast acting insulins on the market, it has the shortest duration and is out of my system in about 2 ½ hours — that is important when you are taking about three shots per meal so you don’t have a ton of insulin tails floating around in your body! A lot of people seem to think Apidra is also the fastest insulin on the market – there are charts published that show it starting to act in 20 minutes, which is actually slower than Humalog or Novolog. That is consistent with what happens for me. When I wanted to try it, I was concerned that it would be too fast for my stomach and my doctor thought the same thing also, but he gave me a sample to try. That was two years ago and I have had no regrets in switching to Apidra.
I have had quite a few people try to tell me that I should take Regular insulin because it is the slowest insulin on the market. My problem with that is that Regular insulin hangs around in your system for about six hours. When I eat, I don’t know if my food will digest in 4 hours or 24 hours so I don’t want insulin hanging around in my body for 6 hours with food sitting in my stomach going nowhere. With Apidra, I can take some insulin that will cover the food that does digest right away and it is out of my system fast. I take more when my food starts to digest. Once my food does start to digest, I need something that will start working right away, not an hour from now. Besides your food not digesting, it is hard to get your blood sugar to come back up when you crash because the treatments for low blood glucose don’t work either (except a glucagon shot). John Walsh does have a small section on gastroparesis in Using Insulin and he recommends using Regular insulin. I disagree with him on that, but I would still recommend his book!
Most importantly, you need to test a lot. Even following a gastroparesis diet, it is impossible to tell when your food decides to start to digest. With gastroparesis, trends don’t happen and every day is different. Prior to getting a CGMS (and I am back to doing that since my Navigator died), I was checking my blood sugar about 18 times a day. I literally checked every hour. It is easy to go from 80 to 180 in an hour, and if you aren’t paying attention to when your food starts to digest, you can end up at 400 instead of 180. It is very important to catch your blood sugar when it starts going up instead of trying to bring it down after it gets high. The only way you can do that is by frequent testing or using a CGMS.
Don’t ever let anyone tell you that it is not possible to get decent A1c’s with gastroparesis! It won’t be easy, but it is very possible. The work is worth it because you can get off those blood sugar roller coasters, quit being sick in your stomach all the time and save yourself from even further complications.
I was amazed to find your post while surfing the Internet. I’ve had diabetes since 2003 and I can’t begin to tell you how many doctors have accused me of not trying to do the right thing to control my erratic blood sugar. Thanks so much !!! Now I don’t feel so guilty anymore.
Thanks Kathy. I just started on a pump and they signed me up for a blood glucose management program. I told them that I wasn’t interested and when I explained why (because of the lack of help I received in the past figuring stuff out and had to figure it out on my own), the trainer told me that it is easier to blame someone as being non-compliant than to figure out how to fix a problem. I can definitely see that. But I do understand what you are going thru – been there, done that!
Kelly, I wish I was in PA because your article was so much right on target with me… I am in upstate NY. I have had type 1 diabetes for 24 years. You are the only person who understands what I am going through. I was diagnosed with gastroparesis 6 months ago. No one was giving me any infomation at all about it, any time I asked questions about this condition it was like pulling teeth….I was told to try Reglan, I couldnt handle this medicine, so my doctor switched my insulin pump from Humalog to Humilin R. My sugars are simply all over, and I get frustrated everyday with this stupid gastroparesis. I am tired of throwing up and definately sick of all the rollercoasters with my sugars….I am on a strict no fat/no fiber diet and still find that I have a hard time with almost everything that goes in my mouth! So … liquids are pretty much the safest with me. Anyways, I just wanted to tell you that I appreciated your post soooo very much. I was extremely relieved to know that it IS POSSIBLE to get my A1C’S back down in the 6’s, as I was also told that it would’t be possible to get my sugars that low again. Thank you so much for all your great info, and the websites. I felt so alone dealing with this before I read your post. Thank you thank you thank you !!!!
Julie, I found absolutely no help from doctors and pretty much had to figure stuff out on my own so I know exactly what you are going thru. Boost, peanut butter & yogurt are pretty much staples for my diet.
If you don’t have a CGMS, I highly recommend getting a Dexcom – it will really help & gastroparesis is one of the qualifiers for getting one. I have my high alarm set for 120 and when it goes off, I know my food is starting to digest & it is time for insulin.
I would also dump the regular insulin and use Apidra. As far as duration, it is out of your system the fastest. When you have no idea when food is going to digest, I would think that regular hanging around for six hours would be a nightmare. Everyone seems to think that Apidra is the fastest, but I find that it takes 20 minutes to start working – not too fast for gastro. Web MD has a chart that shows Apidra takes 20 minutes to start and I have seen that same information elsewhere. I have that chart listed under “Information for Diabetics” on the right-side of my blog.
TuDiabetes has a group for gastroparesis that you might want to check out. It is not real active, but a good place to read and you can ask questions if you want. Or, if you just need to vent and have people understand what you are going thru.
Hey Kelly – just noticed the link on the T1 board and read the article. I think it is really well written and I’m certain that someone with gastro issues is going to read it and have an “Ah ha!” moment. Keep it going!
Excellent post Kelly. I never quite understood gastropareis, but I knew that it effected a diabetic blood sugars in wacky ways. You’ve written a really informative way of dealing with it (really – Dr. B is under 30g of carbs a day). I love to learn new things about diabetes, and how to manage this wacky disease of ours. Can’t wait for more posts from you (I’m following you now!). I’ll spread the word about you my PWD friend!