Gluten Withdrawal

Folks, it is still working. Eating gluten-free is allowing my blood sugars to be very stable (for a Type 1 Diabetic, not a non-diabetic) while still eating 30-50 carbs at a meal. I find this amazing.

I tried to document my first couple days in my last post, but it is confusing. There are so many numbers!

I have not been limiting my carbs other than not going crazy. At each meal, I eat what I want and the portions I want. I just make sure they are gluten-free. I have not taken my fast acting insulin since Tuesday, April 25, 2017. Not a drop. My body is able to cover the carb load at every meal.

Since Tuesday, I had been taking my long acting insulin. I thought I might still need it, but on Wednesday evening (4/26/17) I started to go low in between meals. So on Thursday, I lowered my long acting insulin dose from 7 units to 5 units. I had low episodes that afternoon and evening. In fact, I found myself at 86 BG right before bed. Rats. I might go lower through the night! This incurred a late night call to my lovely sister-in-law who is holding my hand through this whole ordeal. I fixed that level through juice but did set an alarm to check my BG in the middle of the night.

On Friday, I lowered my Toujeo dose again to 4 units. Here’s where I get super frustrated. I was low at 10am, 11am, and 12:45pm. By lunch I’m feeling like I need a juice IV! In the middle of those lows, I was at Costco. I know I’m not supposed to drive if my BG is below 100. So me and my two children are just sitting in the van, do-dee-do, waiting for my BG to go up. So frustrating!

Saturday, April 29, 2017, I decide to not take any insulin. Repeated low episodes are so annoying and potentially dangerous. Here is where it all falls apart…

Saturday was not a normal day, Dan was brewing with a friend, and my friend and I were going shopping while the hubby’s watched the kids. I rushed my breakfast and lunch, not eating the carb or calorie load I normally would. While I’m out shopping in the afternoon, I’m feeling progressively “off.” I repeatedly check my BG, but it’s not low. I began around 1:30 with a BG of 148, and I proceeded to check is every 45 minutes or so as I grew shakier and shakier (the lowest reading I had this entire ordeal is 96…not low at all). I also had shortness of breath and the feeling I was about to vomit.

As we are driving home, I start to pass out. I start shouting, “I don’t feel good. I don’t feel good!”

My sweet friend calmly pulls over (bless her heart!). She gets juice ready (the feelings are like a low even though my BG says otherwise). I quickly take 2 units of Toujeo (It seemed like the right thing to do. My BG wasn’t low, but I thought maybe it would stabilize me somehow) and recline my chair.

I start to feel better so we continue on. We decide to pick me up a protein bar at a grocery store, and by the time we are back at the car, I’m feeling like I’ll pass out again.

We try to decide if we should go to the hospital, go home, or call an ambulance.

The feeling hits again a few minutes later so we pull over and call an ambulance. While waiting for it to arrive, I start to feel better again, but I think it’s too weird to not seek medical help.

The ambulance arrives and checks me out. I’m fine. Blood pressure, blood glucose, heart rate (so odd to me, I felt like my heart was racing!) everything looks fine.

Weird.

We talk my symptoms over with the EMTs. They scold me for changing my dose of insulin on my own, and we leave the ambulance.

We were stopped at a meat market. We decide to go in to get ice cream for dessert. I don’t even make it to the front door, and I start to feel faint again.

Dan and I decide to go to the hospital.

I feel so bad walking in to the ER that I just lay down on the ground while Dan checks me in. Ha!

The ER runs all kinds of tests: EKG, chest x-rays, blood work, urine tests, blood pressure in different positions, etc. I’m fine. 100% clean bill of health. Absolutely nothing wrong with me.

Right. As I lay on the bed visibly shaking. Of course there’s nothing wrong with me.

I’m super scared at this point. They are discharging me, and I can’t calm down. They say I can just come back if I feel bad again. AGAIN??? I STILL feel bad. I’m still shaking!!!

I really feel like I’m going to die, and the hospital has no idea why. Looking back maybe I should’ve taken comfort in this. The Lord knows my time and there’s nothing a hospital or team of doctors can do to change that.

I’m really just scared stiff to leave. The last doctor asks me about my anxiety level. I begin to wonder if it’s a panic attack. I decline any medication and decide to head home.

As I’m talking to the last doctor, I ask Dan to start researching what happens when people stop eating gluten.

We get back to our friend’s house. I still fee rotten. They serve me up dinner quickly, and I start to feel better very quickly. The shaking is still present but the faint/ill feeling subsides. Yay!

I spend the next hour trying to get a hold of my endocrinologist just to run everything by them. Could not using insulin cause this? I really thought the fault lied with me not taking the Toujeo that day.

We get home, get the kids in bed, I get off the phone with the endo, and Dan says, “So it looks like gluten withdrawal is a real thing.” What?

We read several articles that night that tell personal stories of gluten withdrawal being very similar to drug withdrawal. We couldn’t find any medical articles, but there are PLENTY of personal stories floating around the internet.

I’m now one of them. I think I exacerbated my symptoms by not eating enough, but gluten withdrawal is a real thing. I’m a believer. It felt awful, like I was dying.

I’m now 2 days from the episode. The shaking is nearly gone but gets worse if I wait too long to eat. I’m eating every 2-3 hours and feeling fairly normal now. I have not taken any insulin (fast or quick acting) since Saturday, April 29, 2017 at 3:45pm. My endocrinologist agreed with my assessment of my BG and subsequent reduction in insulin. She is completely on board with 0 insulin unless my BG spikes. I have only had 2 readings higher than 150 since I started my GF diet.

1. One was because I loaded my system on juice before arriving at the hospital (215 BG…not THAT high really).
2. The second was last night. I was 197 before bed. I had a snack mix that evening. I’m wondering if there was gluten in it. Not sure what happened there.

Another example, for lunch today I was 90 BG pre-meal. I ate a lower carb (for me) lunch at 20-25 carbs (all gluten free) and was 126 BG 2 hours post-meal.

Amazing. Everything I’ve read about gluten prohibiting the carbs from absorbing correctly in my gut (instead heading straight for the bloodstream) appear to be correct. Another note, I think the reason this is working too is that my pancreas is not 100% dead yet. I am still producing some insulin and not having gluten in my diet is allowing my body to use that small amount of insulin better.

Cuh-razy. Right?