Today, I am 9 days into my new food restrictions and just about 1 year past my upper GI to widen my esophagus. I was warned at the time that it wasn't a permanent fix, and it does seem like I've probably put my own health (in this respect, at least) on the back burner for a bit too long. Summer might be turning into "upper GI procedure" season for me!
In addition to foods I already knew were problems (bananas, melons, yeast), we added chicken for sure and a long list of possibles, including squashes, peas, and wheat. Which got me thinking about wheat allergy---not gluten intolerance (commonly seen as celiac disease but also including some skin manifestations).
Wheat is one of the top 8 IgE-related food allergens in kids; many outgrow the allergy by adulthood. Its gluten proteins are the trigger of IgA (not E) and other immune cell reactions in gluten intolerance conditions. And wheat is one of the common causes of eosinophilia (build-up of yet another type of immune cell) in the esophagus of EoE.
It's easy to confuse the different types of food reactions and just call them all allergies. And the treatment for all of the different conditions is the same: avoidance. The physiology differs, though, and I think the psychology does, too:
Tell me that any of those options wouldn't mess with your head!
As I learn more about my food triggers of EoE, though, I'm feeling more comfortable with the idea of managing it and living with it. I'm still worrying about things:
But I'm also appreciating an odd contrast with my daughter's anaphylactic allergies: her risks are clearly defined (and potentially lethal), whereas mine are less clear-cut (and sometimes emergent) but not nearly at the same scariness level. Jo's treatment: always avoid all forms of her allergenic foods. In EoE, I'm just starting on the trial elimination of foods, based on symptom timing and skin test results. I'm glad that it's me who has a condition that needs invasive procedures to assess and improve, too, and not my child.
Figuring out this funny food allergy-but-different-immune response condition really takes a trial-and-error approach. My particular plan with the allergist is to eliminate only the definite causes, take another look at the esophagus, and hope that the inflammation and cellular responses improved enough to stop there. If not, we'll re-assess (as I bounce between my allergy and GI specialists) until I get to a manageable place. This tactic is opposite a more-common approach to early EoE treatment: total elimination of top culprits (similar to anaphylactic culprits) and careful individual re-introduction to detect symptoms. But our baby steps are a measured approach that fits my already restricted meal planning for my daughter as well as my aneurysm risks with repeat GI endoscopies.
I was reminded pretty quickly this week that my allergy-friendly recipes are heavily snack based, because it's those baked goods that rely so much on butters, oils, and eggs. We just stopped including nuts and cheese in meals and called it a day.
Now I'm thinking deliberately about daily nutrition, not just fun foods. It's something new for me and makes me grouchy, because I'd really still rather just have Gram's lasagna. All of the time. Last night was a success, though: pork tenderloin marinated with salt-free spices, steamed green beans with olive oil drizzles, and couscous with fresh mint leaves and a Greek spice mix. Tonight, leftovers!
But I do hope that, once my brain gets over this extra food hurdle (with a lot of help from supportive, clear-thinking friends!), our dinners will have the same result as our vegan-like baking: healthful, mindful foods to share all around. I'm sure that we'll have nights when my family eats chicken or breads and grains without me, but I am still going to aim for big, inclusive family meals as often as I can.
And I'll probably dream of lasagna. Chicken cacciatore. The yeast-iest pizza ever.
Good thing I like quick breads.
I posted early this spring about advance planning for my tween's food allergies: updated 504 accommodations, learning to self-inject EpiPens, and the like. As we face growing older with food allergies, I find myself unable to rely on the basic parent-centered tenets I used in the playdate phase of life:
Now, we are shifting to tenets of self care, so soon and too suddenly (for me, at least!):
Mostly, this is going well. I have found myself searching out resources again, though, much like when we first found out about the severity of these food allergies. This time, I have a ton of great places to go already---from Kids With Food Allergies to the AAFA, FARE, ACAAI, and more. Still, I sometimes come up short with just where we need help (like when we looked for role-playing examples of how a child can speak with an adult who really isn't understanding the seriousness of her food avoidance needs).
My latest search is for a pocket card about when to use the EpiPen.
We figured out quickly that Jo needs not only to know HOW to use the pen correctly but also WHEN. And, truly, that's something that is still unclear to a lot of adults, especially when we are in the middle of a scary situation. To ask a child of any age to do it too weighs on my shoulders. Knowing how and when to do this goes hand in hand with her independence, though, and the card has to be small enough to go with her pens but in clear enough language for anyone of any age to understand it quickly. That's a lot to ask from a 3x5 piece of paper!
I've found some great posters, action plans, and other full-page resources from the usual amazing sites:
This 2013 ACAAI anaphylaxis card via Kids With Food Allergies comes close to what I'm seeking, but it doesn't give as much clarity as I'd like for our specific needs. Something between these medical basics and the details of the posters would be ideal, really.
So, for now, I decided to make our own personalized, plain-language "When to Use Epi" card and try it out for the summer. After talking through scenarios with Jo and her allergist, I decided to include more common food experiences that might not need epinephrine but might be confusing to a tween with food allergies when a parent isn't nearby. We'll laminate a copy of this for her new purse-pack and for the swim bag.
I've added the downloadable PDF version of our front-back card here in case any of you are seeking similar* portable cheat sheets for your growing kids with food allergies.
*Medical disclaimer time: The instructions I put on OUR card are instructions from OUR allergist to my daughter for her particular situation at this particular time. Although anaphylaxis does have some consistent presentations, its triggers, speed of onset, and treatment plans vary slightly for every person and situation. Please feel free to use this card only as an example of how you might formulate your own card with your allergist's help. I highly suggest taking any example of your own to the allergist for approval, too.
An extra post this week, as my brain edges toward imploding from the logistics of feeding multiple people, all with different food allergies.
In my opinion, health maintenance, as with all things in life, needs to be attended to in moderation (with the exception of NEVER forgetting to take along an EpiPen set). So when I have food allergy skin testing to confirm some possible triggers of an immune condition diagnosed last year that causes my esophagus to swell shut, I'm prepared for some answers that I can live with and some that I can sort-of adapt to my current life.
After all, my family has made it through huge health challenges already: changing our entirely dairy-based diet, learning to remake every baked good without eggs, finding protein sources that don't include nuts or many legumes. And then revising our diets yet again for low-salt, low-cholesterol options as an extra protection against family genes and repeat open-heart surgeries.
And that's just us. We live in a more urban setting than I ever grew up in, and we've met people who struggle with so much bigger problems, health and otherwise. It's easy for me to get frustrated about how health dictates much of our choices, but it's easier for me to get a grip and remember how lucky we are, too, pretty much every day.
But I'm struggling with that frustration again today. On top of so many other things, I'm now adding chicken---in any form---to my don't eat list. Really, chicken? Yeast was already there, halfheartedly, and my skin test reaction confirmed that I should really do better to avoid that, too. But chicken caught me off guard. It's such a basic and malleable source of protein, especially when we are limited with soy and stuck without so many other good high-protein foods.
This is not as huge as our past changes, I know...but it does mean rethinking my family's meals AGAIN. And sometimes I just wish that I could have a meal plan, make it, and keep it, no changes needed except for preferences.
On the plus side, I do have a wonderful allergist who takes extra time to make plans, not just diagnoses, and he really makes an effort to understand how food changes affect the rest of our lives. I might seriously consider moving into the office with my girls this summer, as we cluster-start their allergy shots, and bringing the team chocolate treats for a thank you---because chocolate is still on the safe list, and that is a huge positive!
In honor of the Wonder Woman movie release this weekend, here's a post on a wonder pulse: the chickpea.
Have you ever heard of a low-nickel diet? It's yet another dietary restriction in our house, this time for me because of my severe metal allergies that lead to infections when I blister after metal contact. Knowledge and research about low-nickel diets are not as clearcut as for some other food eliminations or replacements. And, I feel, it's harder to see the benefit of reducing food contact with metals, too. Still, I give it a decent effort; I've changed a lot of food choices, from canned tomatoes for sauce to boxed, from canned black olives to glass mixed olives or giardiniera. I try to balance my fiber intake so that I rely less on supposedly high-nickel foods like figs. As food avoidance goes, it's not too bad.
I only bring up low-nickel eating because it's been a surprise factor in a new food allergy favorite: aquafaba. We have a lovely group of supportive friends across the country. When the wonders of aquafaba---the liquid that suspends canned chick peas---appeared in media last fall, many people sent the articles to me for use in baking for my egg-free daughters. I got excited; then I got realistic.
So, I love chickpeas. My mother would laugh at that---I hated them when I was younger. I worked my way backward from hummus to falafel to the actual bean (scientifically, a pulse). I like them raw, with lemon juice in salads, roasted with smoked paprika. I use the chickpea flour to coat our chicken, thicken my sauces, and make homemade sesame-free hummus (still working on that one).
Also, I hate food waste, so the idea of using the liquid with the chickpeas sounded great as a healthier egg replacer than root starches. But this is where I drew my nickel-diet line; using the liquid that coated a can (probably for awhile) just seems like a bad idea for me, especially after being diagnosed with an immune/allergic esophageal condition last year.
The garbanzo truly is a wonder pulse, though: full of fiber, protein, iron, calcium, magnesium, potassium, and more. Mashable, toastable, spreadable, easy to pop a few into your hands for a snack---portable, even. Also firmer than a lot of similar bean alternatives, which is nicer for picky kids. You can probably guess that I make an exception to my no-canned-food diet for---copiously rinsed---canned chickpeas. It's just too convenient, and they're just too healthful and tasty to avoid.
It's hard for anyone to balance eating carefully with enjoying the food, and that's especially true for people with any kind of modified diet (#customeaters!). Allergies and immune conditions have long existed, but we're more connected now than ever before. You might be surprised who, even in your small circle, might be avoiding or replacing foods for health reasons.
Today, instead of a dairy-free/egg-free/nut-free recipe, I'd like to connect you with some great resources on using pulses in general, and chickpeas in particular, with whatever diet you follow.
We can't use aquafaba, but we can maximize our creativity with the legume itself---one of the oldest cultivated foods on the planet. Try a few of these ideas for your summer cookouts, or start with some hidden flour to get the nutrition in for picky eaters.
And don't forget to share your ideas, recipes, and successes with me on Instagram or Twitter!
It's been 3 weeks, but I am still baking anything and everything with strawberries from my picking bonanza. My family, our neighbors, and even the allergy office staff have been supportive taste testers for me, and I think we finally have a new recipe to come back to over the years: a strawberry quick bread that isn't overly sweet and makes enough to share.
Like other quick breads, this one relies on baking soda and powder instead of yeast, and it bakes without kneading or proofing in under an hour. The recipe makes two full-size (9x5 or 8x5) loaves; if you cut it in half, it's a great way to use up the very last bit of mashed strawberry on hand after jam is done.
This recipe is our third try. The first relied only on lemon curd for the sweetness and liquid, but the texture wasn't quite right. The second was a best-guess version I settled on without any guides except my long-time love of veggie (like pumpkin or zucchini) quick breads. That attempt was shareable, but I find the aftertaste too bitter for my liking---that's a reflection of the baking powder---and too dry to enjoy without a spread. I kept all of my second-try ingredients, but I increased the applesauce and reduced the baking powder. Quick breads, especially ones with acidic fruits, are forgiving for egg-free bakers: they naturally react with small amounts of chemical leaveners to rise. Our final version still had a nice crackly dome even after I cut the baking powder in half.
For our low-key, at-home Memorial Day, we'll slice the strawberry bread and top it with some fresh blueberries and some SoDelicious coconut nondairy whipped topping for a red, white, and blue dessert. I hope that you have a wonderful long weekend with family, friends, and good food! If you try the recipe, don't forget to let me know here, or on Instagram, too.
Sometimes I feel like the writers for SNL. I have a great blog plan. Just need to wrap it up. And then life happens, and I just write about that instead, because it’s too good to pass up.
This week’s example: Birthday phone call with my brother.
Him: What are you up to?
Me: I’m making egg-free key lime bars, like pie but without the allergens.
Him: So you still cook all weird and stuff, can’t crack an egg?
Me: Yep. No signs of change yet.
Him: Well, I’m allergic but I eat eggs anyway.
Me, thinking about how his possibly high blood work from 1983 that worried a doctor enough to delay one MMR shot but came with no history of a problem eating eggs ever does not constitute a food allergy: Well, that’s nice for you.
Later in the week, at my brother’s house for a birthday party.
Me, taking out Jo’s vegan/nut-free chocolate cookie cake with peppermint icing that I made 2 weeks ago and froze just for these types of occasion: Are we just about ready to sing and have cake?
Him: Ew, what’s that?
Me, after going through this same scenario for every holiday and party and cookout for the past 9 years: Jo’s cake so that she can have a treat to celebrate, too.
Me, putting away the extra slice that I brought him because he likes brownies and cookies better than store cakes with lots of icing: [nothing, because I learned my lesson after 9 years of aiming for education and ending up with debate, arguments, hurt feelings, emergency treatments, and more].
This past year has been tumultuous for us in health but we have found that, sometimes, extended family members surprise you with their helpfulness and that, sometimes, family becomes the important, kind, trustworthy people around you instead of just the people you share genes with. That’s not always how you think life will turn out, but the support we do find is still a blessing and a source of strength. We made it through the birthday party. I'd like to say we made it through carefree, but that might be a bit of a stretch. Jo liked her cake, though. :-)
There’s no real point to this blog. Except maybe that, throughout the week, this has been on my mind: Doctors and other professionals who insist that kids with food allergies can safely participate in sports, hobbies, sleepovers, and more don’t really think beyond the actual safety risk of touching/eating allergens to the larger social issues. No one is comfortable for long when they are misunderstood (at best), insulted, or excluded. Sometimes I think those social issues like the birthday party moment happen much more often than anaphylaxis, or even milder allergic reactions. These "soft" problems shouldn't be overlooked.
It's food allergy awareness week, and I've watched the amazing professionals, advocates, parents, and others support food allergy safety, education, and research. They are movers and shakers, and I'm always grateful and often in awe of their nonstop efforts. I think, perhaps, the larger community of allergy and asthma health professionals often overlooks the role that dieticians, psychologists, and counselors can play in their practices for their young patients, though. I’d like to see that partnership grow to help kids of all ages navigate life with a limiting, but not debilitating, condition.
Hi, I'm Nicole.
ABOUT THE BLOG
An apothecary is a person or a place. Either one implies healing and relates to pharmacy in its truest sense, as a source of treatment and advice.
This blog is my way of uniting my pharmacy training with my efforts to provide a healthy and safe lifestyle for my family. In true apothecary form, I research and prescribe alternative ingredients that work just right in each specific recipe, and I would like to share the results with anyone who needs help making their own family’s kitchen allergy safe and heart healthy.
Nicole Van Hoey's books on Goodreads
Bakery Bites: Breads and Treats Without Dairy, Eggs, Nuts, Seeds, or Soy
ratings: 1 (avg rating 5.00)
Kitchen Adventures With Multiple Food Allergies: A Recipe Collection for Celebrations Without Dairy, Eggs, Peanuts, Tree Nuts, Seeds, or Soy