Adverse Effects of the Rare and Unusual Kind

confused-smileyIt was the burping.

There are a lot of side effects that you hear about with medication. Headache, nausea, vomiting, gastrointestinal distress, mood changes. Death. (I still can’t figure out how that’s a side effect.)

But for me, it was the burping.

Actually, it wasn’t just the burping. It was the gastrointestinal distress that really set it off for me last August. It came, quite suddenly, and it was miserable. And I couldn’t figure out what the hell was causing it. I hadn’t started anything new. I wasn’t eating anything new. Was it just “one of those things”? Had I suddenly developed a food intolerance? I had no idea.

So I did what anyone with a confusing stomach problem and an autoimmune disease would do: I gave up gluten. For three whole months. I only ate it a couple of times, to see “test” it out and it seemed to confirm that I was now intolerant if not completely allergic to gluten. Celiac panel was negative, but lab results can lie. Right?

Even with no gluten, I still had symptoms. But there was a new one.

Burping. I don’t know why, but my body decided to react to whatever it was I was doing with burping. All the time. Like, every five minutes. Another little burp. I would wake up in the middle of the night with stomach pains, get up to go to the bathroom, only to reason I needed to let out a belch. It was Horrible.

I googled the shit (sorry, bad pun) out of burping to see what it meant, and it really led me to absolutely nothing useful. But I kept up with the gluten-free diet, because it was the only thing I had to go on. My symptoms were less than they were before I was gluten-free, and no other nutrient had consistently bad effects.

I had almost come to accept that I was now one of the many people who had to live a gluten free life. And for the most part I was pretty okay with. Gluten free bread? Kinda tiny, but not bad. Gluten free cookies? Pretty tasty. Gluten free pasta? I’ve been eating it since before gluten free was cool. Gluten free pizza? Well… like I said, I was pretty okay being gluten free. I wasn’t totally okay.

My late December endo appointment arrived and I checked in with my endo about my new dietary habits. She thought it was kind of weird. She didn’t think I suddenly had a gluten intolerance. She thought it was the Victoza.

My precious, darling Victoza.

Which I had gone up in dose in late July.

She suggested that the higher dose might be affect my gut motility so much that I could handle certain foods anymore. Eliminating the gluten protein might just be mediating the effects.

“We really don’t know that much about Victoza in type 1 diabetics,” she explained. “It’s not working the same in you as it does in a type 2 diabetic because you don’t have a functioning pancreas.” She suggested that because it couldn’t do anything to my pancreas, that the drug might be focusing its action entirely on my digestive track. She recommended that I lower my dose to what I was taking at the beginning of the summer, when I wasn’t having the symptoms.

She told me to wait a month. Then add gluten back into my diet.

Well, I made it two weeks. Because I’m going to Mexico next week and I’ll be damned if I needlessly avoid flour tortillas and cinnamon-coated churros (hey, it has cinnamon — it must be good for me!).

So I had gluten one night at a dinner with a local book club. Nothing happened. A few days later, a muffin. A couple days after that, a Quiznos sandwich. It’s been one week. So far, nothing has happened.

In fact, everything seems to be quite normal.

Of course, with the sudden appearance of gluten back in my diet, I’ve, um, indulged a little too much so I need to work on not going crazy with the junk food. But it does seem that my body might do well on Victoza, but it doesn’t do well on too much Victoza. And that to me makes sense because there are other medications, like anti-depressants, that can do wonders on the right dose. But if you take too much or too little, things start to go a little crazy.

I’m back down on a 1.2 mg dose of Victoza. It doesn’t suppress my hunger quite as well as 1.8 mg did, but I’m also not crazy ravenous as I was before. So far I haven’t seen the need to change my insulin doses at all. As long as I continue to watch what I eat and exercise regularly, I don’t imagine that I will gain any weight but I know I have to keep a close eye on things to make sure the reduction doesn’t have any negative impacts.

But at least the burping is gone. Burping is the worst.

Top Posts of 2014

I thought it would be fun to reflect on last year’s blog posts!

1. My favorite post was The Case of the Possessed Dexcom Sensor.

“That’s strange, I thought. When it was powered up, it prompted me to enter the time and date. When it got to the trend graph, there’s was nothing. There was nothing on the graph. The entire day had been erased. All my data was gone.”

2. My most popular post was Omnipod & Freestyle Users: Test Strip Recall! 

“Attention fellow podders!! Abbott has issued a recall for its Freestyle test strips that are used with the Omnipod PDM. According to Abbott, the strips may be reading erroneously low blood sugars. You should contact Abbott to receive a new supply of 400 test strips.”

3. My most helpful post was The Story of the Insulin Onion.

“Layer by layer of insulin starts to work, but the inner layers can work until the outer layers have dissipated. The larger the dose, the bigger the insulin onion.”

4. A post whose success surprised me was On Being Diagnosed With “Juvenile” Diabetes As An Adult.

“Your tests showed a large amount of glucose in your urine and you’re producing ketones. You have diabetes, it’s a pretty serious situation and we need to send you to the hospital. Do you have anyone with you?”

5. A post I feel didn’t get the attention it deserved was Walking A Mile.

“We are so focused on our own arduous path that we rarely look over to see if someone else needs help. We judge people based solely on a few sideways glances, never really looking to see what they’re working against.”

6. My most beautiful post was Casting Stones.

“The grass isn’t always greener on the other side. Sometimes it’s just another shade of crap.” 

7. The post I was most scared to push publish on was Cool Kids.

“But I also want people to understand that the people you are jealous of also work their asses off for this and it’s not an accident that things are the way they are. This happens in almost every blogging niche — from fashion to home design to food to other chronic diseases. There are people who dedicate themselves just a little bit more to doing what they are doing and they become more well-known, and companies take notice of that.”

8. The post I am most proud of was God’s Country. 

“I couldn’t believe it. No, really, I couldn’t believe it.”

New Year, New A1C Result

Technically my endocrinologist appointment was on Monday, so not exactly in the new year, but close enough.

And as I predicted, my A1C went up.

I just can’t — okay, okay, never say can’t — I pretty much have the hardest time ever keeping my A1C stable. Never mind getting it to drop down again.

Okay, so what did my A1C go up to? you might be wondering. Well, I don’t normally like to talk about A1C results, but since I talked about my last one (6.6%!), I might as well share this one so you have some kind of context.

My A1C was 7%.

I know, right? I’m upset (not really) because it went up to 7%. A year ago I would never have even dreamed that my A1C could ever rise to 7% because at that point, I was simply trying to get down to 7%. So clearly you can see that in 2014 my entire vision of what my diabetes management could or should look like turned on its head.

And I like that.

It was sort of cool to be a little miffed, a touch chagrined, a pinch nettled at the thought of having an A1C resting at 7% because OMG HOW MANY YEARS DID I FIGHT TO GET OUT OF THE 8S?!

ABOUT A BILLION THAT’S HOW MANY.

What? Exaggeration is my spiritual gift.

Anyway, I knew it was going to go up. I overcompensated a bit with some lows in November and it took me awhile to dig myself out of my penchant for overzealously changing my basal rates every goddamn day. Seriously I either don’t touch my basal rates for two months or I’m tweaking with every new blood sugar reading, and usually multiple basal rates at once. Oh I went low in the morning? Well then I should change my overnight basal rate, my bolus ratio at dinner, and heck, maybe my bolus ratio at breakfast too just to make sure I won’t drop? And that does not really make for a very happy diabetes, let me tell you.

I also talked with my endocrinologist about my gut problems. Basically I’d had gastrointestinal distress (that’s putting it delicately) for awhile and decided to go gluten-free. It helped. Except for not quite. I still had “episodes” and I couldn’t figure it out because I definitely was not getting cross contamination for some of them. She said that it’s possible that going gluten free was just moderating the side effects of Victoza, and that perhaps increasing the dose in late July was the reason. Victoza in type 1 PWDs is still a bit of a mystery, after all. So she recommended I go back down to 1.2mg, which I did during June and July with no problems, and then after a few weeks, if it seems like my mystery episodes have subsided, then I can try reintroducing gluten. If the mystery episodes still happen then we’ll know it’s not the Victoza. And if reintroducing gluten doesn’t cause any episodes, then we’ll know I’m not really gluten intolerant. And if reintroducing the gluten does cause problems, then we’ll know it’s not the Victoza and I have a gluten intolerance of some kind, since I have thus far tested negative on the blood test for celiac. (Yes, I know there can be false positives.)

As with basal rates, I tend to want to try everything all at once. Throw the entire pot of (gluten free) spaghetti against the wall to see what sticks. So having my doctor give me some guidelines for pacing things and setting expectations is really helpful. I don’t really mind being gluten-free. It’s a little annoying but I like most everything gluten-free that I’ve had, except for pizza.

Gluten free pizza is horrendous. I wouldn’t subject even my worst enemy to gluten free pizza. It’s just terrible.

But overall I’m feeling pretty good. If I could resolve my tummy troubles and get my A1C back under 7%, that would make for a great start to the new year.

 

How are you feeling these days?