After months of Gastric emptying scans, CT scans, MRI, 2 endoscopies, autonomic testing, I have my diagnosis of Diabetic Enteric Neuropathy. Anyone else dealing with this?
I was puzzled at first with your use of the term, “diabetic enteric neuropathy.” A quick google search leads me to believe that this term is another name for gastroparesis, a form of diabetic autonomic neuropathy.
I’ve been dealing with my gastroparesis (GP) for almost six years now. I’ve been T1D for 34 years. When I received my GP diagnosis, I made a radical change in my diabetes care and treatment. I knew from the landmark Diabetes Complications and Control Trial (DCCT) that keeping blood glucose closer to a normal range had a beneficial effect on retinopathy and nephropathy. Better glucose control was shown to slow down and sometimes reverse symptoms of these two diabetic complications.
I made a major change in my way of eating when I received that 2012 diagnosis, opting to reduce carbs in my diet down to less than 100 grams/day and now less than 60 grams/day. This change in diet alone led to a significant drop in my average blood glucose (as measured by a continuous glucose meter) and more importantly, my glucose variability. That change took much less effort than I feared and the results, in terms of better glycemia, exceeded all expectations.
I also started taking probiotocs in pill form every day. I added mixing up and drinking potato starch with water to my daily routine, too. I’ve read that uncooked potato starch resists digestion in the stomach and small intestine and feeds good bacteria in the colon. I have seen enduring tangible results from this practice.
I still have digestive symptoms but they have not gotten any worse in six years and in some ways the symptoms have eased.
I am happy with this routine and it has worked reasonably well for me. My GP symptoms are mild when compared to their more severe form and what I believe the direction I was headed when I took aggressive action back in 2012.
I advise you to treat this diagnosis with the respect it deserves as the cost to quality of life can be severe if left to progress. Good luck!
Thanks for your reply. Ive had T1 for 35 years. I too changed my eating habits and had been eating less than 30 carbs a day for over a year. My A1c has been 6.6, 6.9. I think the reason I didn’t get a gastroparesis diagnosis is because of the GES results were “normal”. Anything greater than 10% was abnormal, I was 8%. It’s been very frustrating.
I received my GP diagnosis from the Mayo Clinic after I passed another gasto-emptying study conducted at a local hospital. The Mayo clinic doc said any study that lasted less than four hours was not valid in his mind. My first test, at a local hospital, only lasted about two hours or so.
I’ve had T1 for 55 years and have had GP for at least 25 of those years. GP is a real pain to deal with. My diet is considered White. Really high carbs. No or low fat and fiber. On pump or injections it doesn’t seem to matter the BS levels are about the same. I also take Domperidone before each meal. Helps somewhat. So my question is what is you guys diet? pump or injections? Thanks for any help you can offer. I’ll try anything at this point. Thanks
I’ve been in an insulin pump for 22 years. My diet is well, different daily it seems. I was on Reglan for about a month and had to stop 2 weeks ago due to the beginning of some side effects. Now I’m on azithromycin and it’s not working to well. So my diet has mainly been liquids and saltine crackers for the past week and a half. I do ok with baked sweet potato and grilled chicken when my stomach feels ok. Before all of this GI trouble I would not have eaten the carbs but at this point it’s about survival!
I’m not a doctor but I think this is an antibiotic. Are you dealing with an infection, too?
Yeah, you have to do what it takes to survive! I’m sorry, I don’t have much to offer you as I’ve not had to deal with this level of autonomic nerve impairment.
Have you sought out any support groups dedicated to gastroparesis? I’m so sorry you’re dealing with this.