Autonomic Neuropathy

Hi, Wondered if anybody has had or is having experience of Autonomic Neuropathy. With the help of my Dexcom CGM my hba1c is now better but for 20 years have continued to struggle with foods, intolerances, bloating, uncontrolled b/sugars etc. Previously view was candida/cfs but read last week of this condition fairly common in long trms type 1s that can cause long term fatigue and above symptoms. Alcohol also a prob which is a pain. Been type one 31 years. Many thanks, Chris

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Hi Chris, I too have autonomic neuropathy, but came about it in a different way. I am T2, have NEVER had very high blood sugar and not for very long, A1C under 5.4 for 4 years now with diet alone most of that time, a little metformin added recently. I actually have 3 types of neuropathy: autonomic, peripheral, and amyotrophic. The all came on within 6 months. I have these effects from the autonomic neuropathy: I don't sweat, my pulse and respiration don't raise with exercise, my blood pressure is either very low (99 % of the time) or pretty high (in the doctor's office, of course). I'm either constipated or have diarrhea, seldom anything between. I've seen a neurologist twice. The second time he seemed surprised I was still alive. Personally I think I'm doing pretty well, most of what's wrong with me is annoying, but I can deal with it. I could deal with it better if I had a doctor who didn't blame it all on "uncontrolled high blood sugar for a long time," which I know is not true. I seem to have more in common with people who have other autoimmune problems, but they're left to deal with their own problems, too, so I guess it makes no difference in the long run.

My comments probably don't help much, except you might consider a different cause for your problems than T1 diabetes. Maybe a simple food allergy? Just wanted to let you know there are other possibilities.

Hi Chris, have you been tested for Celiac Disease? It can cause all sorts of symptoms including bloating, fatigue, digestion problems.

I'd agree with getting tested for Celiac disease or seeing if you have a gluten intolerance. I've had Type 1 for 18 years, I thought I had gastroparesis (a form of autonomic neuropathy) because I had what I thought was delayed digestion, but it turns out it was actually gluten intolerance. I stopped eating gluten and I no longer have any of those issues. It might be worth checking out.

Hi, Thanks for helpful responses. I have had caeliac tests as well as many others and all negative. Notice with high carb meals i am particularly struggling - will have low sugars for 5 or 6 hours after big meal then i will have sudden rise that will result in having to take massive and frequent insulin doses in attempt to lower normally through night. Its sounding like auto neuropathy from what i have read although been putting down to CFS that i have also been struggling with for 18 yrs. Complex to make sense of. Chris

Have you considered slow digestion/Gastroparesis? The fat, protein, fiber can slow down the release of the carbs. Your bolus then is taking effect too early, leading to a low; later when the glucose from the carbs are released, there is no insulin left, causing highs.

I have slow digestion, and my biggest problem comes with dinner. What works for me is to take half my bolus in (fast acting) Apidra, half in Regular, two different syringes. Some people with a bigger problem than I have take all their boluses in Regular. Liquids are more quickly digested than solid food, and can be a help in getting back to normal.

Whatever the actual problem, I hope that you find an answer soon.