Today is the 1-year anniversary of my open heart surgery to replace an aortic valve and check out a growing aneurysm (left that one in there, unfortunately). Looking back, it's been the most amazing year! I knew surgery was needed, but I didn't realize how much I'd slid and given up until I had a healthy heart again---healthier than it ever was, actually, since I was born with a bad valve.
I still have over a week with my family before we all return to Fall routines of school, orchestra, work travel, softball, and more. This week, instead of a proper blog post, here's a collage of all of the fun places and experiences we had this summer---actually, these are JUST in August!
Photos are from hikes along Bluemont Junction, Potomac Overlook, and the C&O Great Falls trails, the National Zoo, swim days and berry picking days with friends, and a weekend in the Shenandoah.
I'm so very glad to be here, and I'm even glad to be reworking our foods yet again as allergies in our house change. I've learned a lot from being a heart patient and from having OHS. One thing I'm going to remember to hold on to:
Always say yes to (allergy-safe) cake.
I've been away from posting and media for a couple of weeks. After all of this time getting comfortable with allergy-friendly recipes, we are adding more restrictions: no yeast, poultry (maybe all types, maybe just chicken), or wheat (notice, not gluten).
When a medical condition is diagnosed, patients usually need some time to absorb the news and adapt---to regroup. It's a normal adjustment period, when expectations are reset and new habits are started, but normal doesn't mean it isn't scary!
In these early weeks, writing out recipes is the last thing on my mind. Instead, I'm just trying to keep a nutritional balance while I explore different products, ingredients, flavor combinations. Brown rice and lean sausage, a salmon and celery salad, a sweet pineapple sheet cake, and some oat and almond flour pancakes have been fairly successful meal and treat attempts so far. (Plus I threw in another loaf of zucchini raisin bread, with a nearly perfected wheat flour recipe---coming soon!---for the kids.)
Despite all of my family's allergies, I consider us very fortunate. We haven't had to cope with severe physical or mental impairments, or bigger health crises like cancers. Removing or replacing a food (even an entire group or subgroup) isn't without its challenges, for sure, but it's bounce-back-able. That's even truer because of the enormous online support system.
This latest hibernation and reset was a bit different than our first foray into food allergy living: Unlike my daughter, who has anaphylactic reactions to many top allergens, I can be around mine, and around wheat in particular. Rather than have the entire family adjust to the allergy, I can adapt my meal safely from theirs.
That means I'm not eliminating all of my wheat-based treats, snacks, and breads. But I am going to have to get creative to make some of my own safe options. I also don't want to eliminate all gluten just because of a wheat allergy---why remove healthful ingredients and limit my diet even more?
As I add this journey to our well-tread dairy/egg/nut-free path, I'll be sure to include the resources and tips I start to rely on in my coming blog posts. And I'll grow my family cookbook even more, in a direction that I never expected.
If you have any great resources for cooking and baking without wheat---but with other gluten or non-gluten sources like oats, barley, and bean flours, I'd love to hear your ideas!
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.
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!
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.
Easter week is coming up, and it’s a reminder of our great blessings, but it’s also when I recall that we shrunk our world for food allergies when our kids were young. And that’s okay.
We still get a lot of questions, usually of the nice variety, asking what we eat for holidays. More than most days, holidays are heavily food-centric, and people just can’t imagine celebrating in freefrom ways: birthdays without ice cream, Easters without peanut butter or milk chocolate eggs. Not to mention dinners without rolls smothered in butter, creamy potatoes and gravy, and the like. In my childhood, these dinners were replaced with Italian soup covered in romano cheese or eggy gnocchi and pizzelle, but still.
For years, holidays weren’t fun, they were functional, when I was learning to make foods without eggs, dairy, nuts, seeds, and sometimes soy. It was work, and I missed my favorites, and I hated seeing my older daughter start to miss her favorites. But we are a family, and we built our holidays back up together. Now I can’t imagine why it seemed so daunting, or how much time has passed.
Here’s our Easter menu this year. Not only is it free from all of our many allergens, it’s also fairly well balanced for heart health and macronutrients (maybe a tad heavy on the sugar now that Lent is over, though!). And the best part is that it’s all make-ahead/stay-out-of-the-kitchen foods, so I can join in our DC tradition of spending the day together outdoors before coming home to our meal.
It's not at all like what I grew up with, and I do miss those meals and the big family gatherings sometimes. But we have so much to be thankful for and enjoy in life now, and that is definitely my focus.
Happy Easter, and have a lovely 2017 spring.
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