Oh, my! Celiac disease/gluten sensitivity adds quite a wrinkle to the mix!
Has your son “made it” to the point of being “gluten free?” Gluten in a food can reduce the effectiveness of insulin for anywhere from 12 to 36 hours (my data, not data from a published study). It is sometimes difficult to recognize gluten in a food because it is in an ingredient like “modified food starch,” “monosodium glutamate,” “mono and diglycerides,” “caramel food coloring,” and a host of other substances made from wheat. Getting to the “gluten free” stage requires hours of study and tremendous vigilance. I have been “gluten free” now since about 1997.
And, by gum, you have to be suspicious of everything! Recipes change without warning. Gatorade, for example, was gluten free about 10 years ago. Now it has a wheat product in it. Mountain Dew, too, has some flavors that are safe, but others that are not. Diet Coke and Diet Pepsi are not gluten free. And on the list goes. You have to be careful of everything that goes in your mouth. Even flavored coffees are often not gluten free.
The symptoms of celiac disease/gluten sensitivity can vary from one person to another. Gastric distress (cramping diarrhea and gas) is very common. Some people get “head-splitting headaches.” Still others can develop hives and/or what look like fever blisters. Many people develop blister-like sores on their gums and inside their mouth. And then there is the “ineffective insulin” issue.
So, Amanda, how close is your son to “gluten free.” That may be part of this continuing puzzle.
He is definitely not 100% gluten free. We are trying really hard though. Having type 1 and celiac thrown at us at the same time has been hard to adjust too. I think we have been focused more on his diabetes and slowly changing his diet for the celiac not realizing that one affects the other. He doesn’t really have any major symptoms with the celiac other than a mild upset stomach. After reading what you wrote I am having him eat only the things that I know for sure are gluten free “which is not many” for the next couple of days and keeping my fingers crossed that it will make a big difference with his bg. Hopefully over the next couple of days I will be able to find other gf meals to add so he doesn’t get tired of eating the same few meals everyday.
There are two faster acting insulins that can bring blood sugars down. Fiasp is one and the other is an inhalable insulin. Please ask an endocrinologist about what to do and whether these insulins could help. It takes forever for Humalog and novolog to work once blood sugar has gotten that high. It also requires more insulin to bring down a high blood sugar. Also, it’s conceivable that the insulin is bad. It spoils if it’s too hot.
Another thought on this. Insulin shots can be made ineffective in higher doses like this. I’ve followed a recommendation that any SINGLE insulin injection should not be more than 6 units. Problem this causes is that the insulin forms a pool that is absorbed much later than expected. It’s encapsulated in scar tissue because of it’s size and held there to be absorbed very slowly, which plays hob with our patterns.
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Still, taking Metformin may stabilize him better IF his glucagon output is oversized.It reduces output of Glucagon so that he can treat ONLY his food input with insulin, which may well reduce his dosage tremendously. If, but possible. SUre worked for me in days gone by.
My son had the same problems when he first started the pump. Turns out he was getting to much insulin. He was in a rebound loop. Ask your Dr about reducing his insulin load in small amounts so you won’t bottom him out. This worked well for my son. It took forever it seemed but after about 6 weeks he was in normal range. He’s on humalog by the way and it’s working. Can’t hurt to ask. Hope this helps and bless you and your family