Histamine Intolerance Too?

Last week I was inspired to try something new for Zac. On one of the message boards, someone had mentioned making meringue and piping it into shapes for a safe Easter “cookie” for their FPIES kiddo, and that sounded intriguing to me.

We don’t have sugar or vanilla as safe foods yet, but I thought a whipped egg white topping could make an interesting, fluffy topping to his quinoa & egg muffins.

So I whipped up some plain egg whites (that’s exhausting to do by hand!) and dumped them on top of the leftover muffins I’d already made for him that day. I tossed it in the oven for about ten minutes and popped them back out – they were gorgeous!

Zac LOVED it! He scarfed down the remaining three muffins and was licking the egg whites off his fingers. I was thrilled to have discovered something new to offer him!

Then I went to get him out of his high chair and saw that around his mouth, down on his chin, and up one side of one cheek was bright red!

Hmm. I’d heard of the “red around the mouth” rash thing during food trials before, but I’d never heard of it showing up from a safe food. So I posted about it on the FPIES boards. (Note: the red doesn’t show up very well in the photo for some reason. I promise you, it was everywhere I described.)

Immediately I started getting responses: “Looks and sounds like a histamine problem to me.”

When I reported back that in less than an hour the redness had faded completely away, most Mama’s responded with “Oh, yes, that definitely sounds like a histamine problem.”

Just. Great.

Now, I respect the hell out of the other Mama’s “in the trenches” of FPIES, FructMal, IgE allergies, and food allergies in general, and I believe them when they say they have experienced things. I believe them when they discuss what their children are going through. And I believe them when they offer sincere advice about my own kiddos.

But I don’t necessarily issue a diagnosis to one of my sons based on a single Facebook post!

I read and ask questions, and review my food journals to decide if the suggestion actually applies to us. If possible, I ask the doctor for a test to prove or disprove the theory – or do an elimination diet to prove or disprove the theory, if no test is available or offered.

You have to do your due diligence when dealing with unusual symptoms, folks!

So I hit the internet to read more about Histamine Intolerance (HI) and let me tell you, it’s JUST as confusing as Fructose Malabsorption, in terms of what information you can find online about it.

One website says citrus is high in histamines, another says citrus is low in histamines. These aren’t just your average “someone had an opinion and posted it online” websites saying this, either – these are medical-type websites completely contradicting each other!

ACK!

I’m still no expert in HI, and I still haven’t decided with absolute certainty that Zac has HI…but I admit I’m leaning in the direction of thinking he might.

The symptoms of HI are wide, varied, and insufferably vague. But I have noted in the food journals that after Zac eats pork, he consistently has a few of them: diarrhea, short and unhappy naps, and sudden “tantruming” that comes out of nowhere and is extreme in comparison to the tantrum stimulus. Now add to it the red flush on his face, and that’s four symptoms.

If we were to do a test for HI and his DAO markers were in the low range, having two symptoms would be enough for a diagnosis.

I’ve been writing the tantrums and sleep disruptions off as “just his age”, and “we had a change in routine” (even if the change in routine was two days before), and the diarrhea as a simple “pork must be a little rough for him to digest”. As he was having NO FPIES symptoms whatsoever with pork, and we are so desperate for foods, I was willing to accept a little “off-ness” in our quest.

But I had noticed it, even before the red face incident. Noticed it, and been concerned enough to pull pork for several days and make careful notes after reintroduction.

Then he had the red face from the egg whites, and, in reading more about HI, it seems that – at least anecdotally – pork and egg whites are “histamine releasing foods”. They liberate histamine that is floating naturally in your body and send it into overdrive, rather than creating histamine themselves.

But where is he getting all this histamine to be liberated?

Well, I suspect two places as of now. One is from the world at large – nature is fighting to turn to spring! That means lots of histamine loaded goodies floating in the air right now. (Don’t you take Benadryl – an ANTI-histamine in the spring when you sneeze a lot?)

The other place is from the pork itself. While pork IS low in histamine, all meats become incredibly high in histamines once they have been cooked, smoked, cured, aged, fermented, or cultured in some way.

I follow “safe” meat handling procedures, but while thawing a pork roast in the fridge overnight, grinding it into ground pork the next day, and making patties from the ground pork over the next three days is considered “safe” handling…it also is a fantastic way to exponentially increase the histamine load of the meat.

Since that is essentially what I do with ALL our meats, in some form or another, that’s where a lot of histamine is coming from.

So, what to do next?

Not a dang thing, y’all.

Zac has three foods. THREE. FOODS. that he can eat, thanks to FPIES. I have no choice but to give them to him. He needs the nutrition.

I’ll change the way I handle the meats we eat to see if that helps lighten the histamine load of our foods, and avoid using straight egg whites from here on out.

But I spent a few days last week feeling like I was going to go crazy trying to find foods to trial next for Zac that fit all the bills: corn free, fructose free, and histamine load decreasing.

Something has got to give. It’s time to triage our approach.

1. Our first priority is FPIES and Corn-free. Those are clearly his biggest, most dangerous problems, as he won’t be able to eat a food he reacts to via FPIES.
2. Second is FructMal. We saw clear physical effects with Jed during his time of undiagnosed FructMal; consider the word – malabsorption. When you don’t absorb some of your foods properly, it causes other things to not be digested and absorbed properly, and nutrition suffers. Zac hasn’t been tested for FM yet, but based on family history, it is highly likely he has it. We’ll be smart to hold off on fructose foods until we have a more complete diet for him and can trial those foods without danger of inadvertently causing any kind of malnutrition.
3. THIRD is HI. From what I’ve read so far, Histamine will make him uncomfortable, make him behave badly, and be miserable to live with…but it doesn’t carry nearly the same danger as FPIES and FructMal. I simply can’t stress over HI at this point.

One day I can get Zac tested for both FM and HI (and probably the rest of the family, too, when you get down to it). Until then, though, we’ll avoid fructose where we can, I’ll practice better meat practices to reduce the histamine load from the pork, and we’ll keep moving forward on our FPIES path.

This may not be the right approach for every complex FPIES kiddo, but right now, it is the right approach for us. One day when Zac has 40 foods I can rotate through, we can be more strict about avoiding things that may cause problems and trial foods that might be tricky for his body.

Right now we don’t have that luxury. Right now we need to find enough foods to keep him alive.

Alive and red faced on occasion, maybe, but alive is the most important part.

Have you experienced HI with yourself or your kids? Where’d you find your best information on it?