All FPIES parents eventually have to ask themselves the all-important question: What do we trial next?
It’s an important, vexxing, terrifying question.
Early on, Darrel and I came up with a list of foods we wanted to trial. We picked highly nutritious food to get the most bang for our buck, and Zac reacted to all of them. Broccoli, carrots, swiss chard…all no good.
We compiled a new list, and eventually Zac started passing foods off our second list.
And now here we are.
Now we’ve learned that Zac not only has to pass FPIES food trials, but must also deal with Histamine Intolerance and Fructose Malabsorption. Considering his mother and his brother also deal with Salicylate Sensitivity, it’s a decent bet that he’ll also have issues with that, too.
Suddenly finding foods to trial is harder than ever.
For families only dealing with FPIES, the best way to decide what foods to trial is fairly straight-forward, though subject to personal preference.
I’m sort of “thinking out loud” right now, so let me just share my opinion on how to find foods to trial on an FPIES kiddo.
First, take in to consideration what foods your child has reacted to. If their early reactions were to grains, you would be justified in your decision to hold off on any grain trials for a while. If their reactions were to veggies or fruits, likewise, you’d be wise to hold off on any veggies or fruits until you have at least a few trials under your belt.
Then, it’s smart to consult the surveys that have been taken. There’s one very good survey a brilliant FPIES Mama put together that reveals, through data, which foods tend to be successful passes for FPIES kiddos, and which foods are generally more problematic. (The original is here, and a compilation of the data is here.)
The caveat, as always, is that every child is different. Some kiddos will react to generally “easy passes”, and some will be totally fine with “typically tricky” foods (Zac passed goat milk and eggs, both semi-tricky FPIES foods, as an example). Still, it’s a good place to start making your personal list.
The last consideration is a combination of nutritional value and versatility. If there is a choice between trialing two similar foods, and one is clearly nutritionally more complete than the other, then it would be a good idea to trial the powerhouse food first. With FPIES, the kiddos have such limited diets that their food must fill as many vitamin and mineral slots as possible, since their needs won’t be met through variety.
Versatility is important, too; also due to lack of variety, foods like quinoa (which function as a flour substitute, an oat-like flake substitute, and a rice-like grain substitute) are preferred.
Balancing all those things with your own personal food preferences will easily net you a ten or more food item list to start your early food trials.
For us, it’s gotten more complicated.
I think we’re honestly at the point where it’s worth it for us to trial our known reaction foods to determine if Zac truly has outgrown FPIES. Proceeding with our current restrictions – trying to find foods that will be safe for FPIES, Histamine, Fructose and Salicylates – is so restrictive as to be maddening and almost impossible.
We have salmon in our freezer; salmon purchased from a source that catches and immediately preps and flash-freezes the fish right on the boat so the histamine content is almost nil. Having an additional histamine-safe protein for us would alleviate some of the strain on our limited chicken supply, and potentially open up a beef trial on Zac.
If I can eat pork, chicken and salmon, we can risk trialing beef on Zac because if he reacts I will still have plenty of protein sources for my diet. Adding beef to Zac’s diet would be AWESOME because we can much more cheaply and easily procure beef.
Other than the salmon, though, I really feel it’s time to move on to our scarier foods: rice, oats, and – gulp – corn.
I’m scared of all three, but encouraged at the same time. This summer Zac has snatched pieces of Jed’s rice crackers off the floor and eaten them with no reactions. He also ate almost an entire corn chip – with no reaction.
And I just discovered this week that the bottle of lanolin I’ve been using while pumping milk for him at work has a new ingredient: oat.
He’s been drinking that milk with no reactions; two years ago, he reacted for a day to the minute amount of oat in my Aveeno hand cream!
If all goes well, and Zac has no reactions to rice, oats, and corn, Darrel and I will be 99% sure that he has finally, completely outgrown FPIES.
I’m not sure how long it will take for us to gain that extra 1% of confidence. Maybe another year with no new reactions? But for now, I’d be thrilled with 99% confidence in FPIES being history!
Without FPIES hanging over our heads, we will be able to lump Zac in with Jed in the world of eating. It’s a subtle thing, but it is huge.
For Jed, our mindset is “he can eat anything except…”
For Zac, our mindset is “he can eat nothing but…”
The former is much easier to live with than the latter, by far.
We probably won’t completely abandon all traditional FPIES food trial protocols immediately; probably we’ll adjust them a bit to fit the new reality. Instead of a single food for nearly 2 weeks of trialing with a built in break, we’ll probably do a single food for a few days of trialing with no break. That’s pretty much how we do trials for Jed, now.
And we won’t be nearly as cautious about the sourcing of all our foods. In fact, we may decide to trial more easily obtained versions of some of our special foods before truly gaining our 99% confidence that FPIES is gone. Example: regular store bought bananas instead of the shipped-from-Florida bananas.
Whatever happens, there is one thing I DO know for sure: I will continue to do my dead-level best to avoid GMO’s and pesticides in our foods.
That means we will still be incredibly limited in our ability to eat out, and I will still be preparing a lot of our food from scratch at home.
But it will still be so much easier than what we’ve been doing that I am downright tingly at the thought!
Much of this post was simply ordering my thoughts on the subject, so thanks for indulging. Now I’m curious, though: for those of you who handle multiple food issues, how do you decide what to trial?