A Cancelled Lab Test, an Unexpected Diagnosis, and a New Diet

I mentioned a few weeks ago in my discourse about my ER visit that I was curious about the possibility of alpha-gal syndrome. Recall that I asked for an AGS test to be done along with the extra labs my docs wanted.

Yeah, about those tests…

I went in for the draw, waited the normal amount of time, and only saw a couple of results, not the ones I was expecting. Before I left for the family reunion, I messaged my care team asking if they knew anything.

“Someone in the lab cancelled the test. There is no note as to why so I have reached out to see why.”

That’s perplexing. And annoying. Why would the lab cancel tests?

A couple of days later, my care team made contact with the lab tech who said that since I’d been seen in the ER, they didn’t think I needed the test.

Why can a lab tech cancel a test?

Seriously. The only person who should be able to cancel a test is the person who ordered it in the first place.

Turns out that when the Yellow Team ordered the new tests (to see if my kidney function had recovered at all), the phlebotomist looked at my chart and saw that I’d been discharged from the ER, so assumed there was no need to go down there and look for a patient who wasn’t there.

We figured this out when I went back up to the lab and I made an off-hand remark to the tech who was checking me in.

What Did I Do About It?

I had a nice talk with the tech who fixed things for me (which involved re-ordering three tests). I opined that I didn’t think phlebotomists should be able to cancel tests. She said they could, but they weren’t supposed to. She also said she’d talk to her supervisor and/or the tech involved.

I headed down to the patient advocate to bring this to someone’s attention. I had it in my head that I didn’t want anyone to get fired or even really officially disciplined. Tell them they screwed up, sure, but that’s all I wanted to happen to them.

On the other hand, I really wanted the policy to change. A phlebotomist generally doesn’t see a patient’s history, so they don’t know why a particular test was ordered. They just see a draw order and go poke the patient.

The patient advocate’s office took my information and said I’d get a phone call to get more details in the next couple of days.

I got a call about half an hour after I left the VA. From the assistant lab manager.

I was impressed.

He was very apologetic, especially when I made it clear I wasn’t looking for anyone to get fired over this. The upshot of the call was that previous policy required a supervisor to okay the cancellation of a lab order. He’d lifted that requirement a while back but said he was going to reinstitute it after what happened.

Works for me.

The Envelope, Please

I have alpha-gal syndrome, sometimes referred to as AGS, the red meat allergy, or “the tick disease.”

My total immunoglobulin E reading was 240. My IgE for the alpha-gal sugar was 61.5, or about 25.6% of my total IgE. A positive result is anything over .3 IgE AG.

The basic treatment is what’s called an avoidance diet. Sounds simple, right? “Eliminate all mammalian meat—beef, pork, lamb, goat, venison, rabbit (“any animal with hair”)—plus lard, tallow, gravy/drippings, beef broth, pork casings on poultry sausage, and mammal-derived gelatin (marshmallows, gummies, gelatin desserts).”

The reality is somewhat more difficult, because there’s no requirement by the FDA to clearly disclose these kinds of things on ingredient lists. “Natural flavors” could include beef or pork products.

You know what else contains mammal-derived gelatin?

Certain medical supplies, like heparin, which is used to decrease blood clotting. What’s the risk? Extremely rapid onset of anaphylaxis, which can kill people if it’s not treated quickly enough. When you eat mammal meat, it takes a while for your body to process it, and the concentration ramps up fairly slowly.

But when it’s injected directly into your bloodstream, like heparin is, or absorbed via a clotting agent (which can contain mammal-derived gelatin), the reaction is faster and more pronounced.

Or at least, it can be.

And lots of capsules are made with mammal-derived gelatin.

Much like the way different diabetics can respond differently to the same food, AGS patients may not have the same reaction to the same food. Even with a high IgE like I have, I may not react as badly (or as quickly) as someone with a low IgE.

Fun Times Ahead

In the overall scheme of things, avoiding certain foods isn’t going to be that big of an adjustment for me. I already avoid large quantities of most pork products because of my gout. That means too that I probably can’t eat the GalSafe pork created by Revivicor for xenotransplant. Although the primary distributor of GalSafe pork also sells things like emu and ostrich. Then again, at US$15.50 a pound for ground emu, it’s not something I’m going to be eating regularly.

The problem, though, is as I mentioned above: it’s not as simple as avoiding beef, lamb, pork, and venison. There are plenty of foods flavored with beef bouillon, and not all of them list it in the ingredients. It’s going to be a long path of trial and error, and I’ll probably end up carrying an EpiPen when I go out to eat.

And as I look back, I wonder just how long I’ve been dealing with alpha-gal. Several times in the last couple of years, I’ve run into a violent nasal itch after eating at certain restaurants. Antihistamines cleared it up and even prevented it if I remembered to take them beforehand. It was very frustrating, though, because it was obviously an allergy of some sort, but I never made the time to set up allergy testing.

And alpha-gal doesn’t always show up in a skin-prick test like most allergists use, which makes diagnosis all the more confounding.

It’ll be fine.

Elseread

Ever played an online game, like WoW or Halo? Ever gotten really involved in the community beyond the game? What happens when the servers shut down and the game goes away? The end of the world: how players mourn the death of their favourite online games at The Guardian looks at that question.

Kansas Lawsuit: ALPRs Turn a License Plate Into the ‘Functional Equivalent’ of a ‘GPS Tracking Device’ at Reason looks at a lawsuit taking a novel approach to ALPR systems.

The soundtrack for this post has been Bob’s Jazz Favorites on Spotify.

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