Musings on the Suddenness of Death and Hiding Food Allergies

I'm kind of a mess today.

I was all set to write a perky post about discovering my former supervisor has food allergies! I shared the news this morning with her that my son had passed the pea challenge. She, in turn, shared that she has an anaphylactic nut allergy, autoimmune urticaria and idiopathic anaphylaxis. Who knew!

I launched into several minutes on FAHF-2 and how it will benefit her if the researchers are able to bring it to market. I could see her eyes start to glaze and her uneasy glance around the office. Even when you have these conditions — perhaps especially when you have them — you have to be careful talking too much about them. People judge.

The reason I'm a mess, though, is that I sit right next to a guy who died today. No, he didn't die right in front of me. It happened off-site, at a hotel where he was staying overnight. (He commuted from a town some distance away and kept a room at a hotel for nights when he didn't drive home.) He and I had also had conversations about allergies, as his wife has an anaphylactic allergic to milk. He referenced it quite often, brought food from home she couldn't have, wanted to share the pain and frustrations...but also not. There was always a point where he would shut down and stop talking.

It's so hard to get what we need. We need to talk about this stuff. And yet, almost all the adults I've ever talked with who have an allergy seem to hide that fact from others. In almost every case, I've found out by accident because of some random passing comment that only someone "in the club" would understand.

And now he's dead. Probably a heart attack.

My thoughts have been so random today. I thought "I should go to the funeral and take her an Epi-Pen. I know he said she wouldn't carry one. Now that she's the only parent, she really needs to have one." I thought "I should send her that box of milk-free chocolates for Valentine's Day that he isn't going to be able to send her now. I'm the only one who knows where to get them."

Of course that would all be really weird and inappropriate. Food allergies are not a secret club. I don't get to claim some special bond with this guy just because I had those conversations. I especially shouldn't be talking to a woman I don't even know, about her health condition that she may not have wanted her husband to share.

Relief and shame, all at once. It's what I think adults feel when they recognize someone understands their food allergy. They don't really want to talk about it, but they need to. It's sad to watch the conflict, and to see the self-censorship win almost every time.

I wrote a long, complicated post about the reasons food allergies attract this stigma. I promise that I will edit it and post it at some point. But today, I just wanted to reflect on how sad it is that the stigma is there.

I'll miss my work buddy. I'll miss that possibility of sharing and support. And, of course, I will think a lot over the coming days about the fleeting nature of our lives, and how we need to value every moment with our families.

We need to just have those supportive conversations and stop caring so much about what the judgers of the world think. Time isn't limitless.


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Another Food Allergy Bites the Dust

I think you can plot my Seasonal Affective Disorder by the number of blog posts I write in winter. I've been meaning to give you guys an update for weeks now, but then Christmas happened...and my daughter got pneumonia...and work got hard... And, here we are.

But I had to finally get a blog post up because I have happy news. My son passed yet another food challenge on Friday. This time it was green pea, notable because he failed a challenge for this four years ago. It's also in the dreaded legume family, all of whose members have has been really problematic for him.

The challenge itself was completely uneventful. Two peas, four peas, eight peas, then a cupful and he was done. He had no symptoms. I don't think cold peas for breakfast will be a common occurrence for him. However, it was wonderful to make him a Swanson chicken pot pie for the first time for dinner the night after the challenge. Being able to tolerate peas will also significantly broaden the soup and stew options he has.

I'm sure I seemed ungrateful when the doctor came in to discuss his pass and next steps. "Yeah, yeah, great, peas. Yadda yadda. But what about milk?" Last time we saw her, she said the plan was to do the pea challenge and re-run the milk numbers. This time, either she could tell how anxious we were to do the milk challenge or she really thought a sea-change in his immune system had occurred. Whichever it was, we're scheduled for an open milk challenge at the end of February. In the meantime, the instruction is to stop babying him. Not just a piece of cheese pizza or a spoonful of lasagna - he should eat what we eat. (Never mind that all of us are trained by now to avoid cooking with milk - we know what she meant.) Babying him. Point taken.

While we were walking out the door of the office, I admit it: I got a little weepy. I explained to my son that, while it may be his allergy, the precautions and lifestyle to avoid milk have affected all of us.

"If I passed, maybe you could focus on my sister for once," was his pithy reply.

Ouch! Serves me right for projecting my feelings onto his allergy. But sadly, he's right. I've tried my best to not make him the fragile child, but I suspect that I've failed. The time I spend on food allergies is much greater than any time I devote to my daughter's issues. It's always been that way. When her field trips and class parties rolled around, I was burned out and off duty. But it's hard to hear that the over-attention has negatively impacted my son. Pass or fail on milk, it's time to work harder on cutting the apron strings.

One other thing I wanted to mention: while we were waiting for the final timer to ding, we had time to review all the current RAST scores with his doctor. I wanted to know what the heck we do about all the other varieties of beans now that he's passed two."Go ahead and try them at home," was her answer. Even the Class 2 black beans? "Yep, give it a shot. I really think something has changed for him and all of these Class 2 and maybe even Class 3 levels are going to turn out to not be a problem."



From her lips to God's ear.

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Beans, Beans and More (or Less) Allergenic Beans!

We have a little good news this week: my son passed a home bean challenge for both pinto and cannellini (white) beans last night. Hooray!

At our last allergist visit, they ran the numbers on a number of varieties of beans and many were Class 0, with values like 0.68. My son's doctor thought it was reasonable to try these at home.

Going to stop for a moment and interject: DON'T DO THIS WITHOUT YOUR DOCTOR'S DIRECTION. A lot of things go into whether home challenges are a good idea for your child: how serious the allergen typically is, how far the hospital, how experienced the parents are with recognizing reactions. Many doctors are not comfortable with this at all. But, in our case, it makes sense to do some challenges at home because my son tests slightly allergic to dozens of foods.

He has avoided all beans since around age five, when he started developing new allergies. First it was tuna. Then cashews. Then (to our great surprise), he suddenly became allergic to garbonzo beans, something he had eaten very regularly through toddlerhood. Then it was sugar snap peas. Green beans. Baked beans (a particularly scary reaction that happened at his aunt's house, out of town, without medication in hand). The doctor actually thought it was possible he had something called "idiopathic anaphylaxis" at the time - reactions from unknown causes. However, after we kept a careful journal and did some testing and even in-office challenges, it became apparent he had developed a bean allergy.

At that point, we just started avoiding all beans and peas, which our doctor thought was reasonable. It turns out that 1 in 20 kids can have an allergy to a seed protein that's shared between bean species. If my son had that type of allergy, it was possible even more bean sensitivities would surface.

Fast forward to the start of high school. My son is a very healthy, adventurous eater and he wanted beans back in his diet, so we asked about home challenges at that time. The doctor said "sure."

We followed the same protocol as in the office: start with 1/4 of a bean and double the amount every 20 minutes until he reaches several Tbsps. of the food. The hardest part is that he has to discontinue his antihistamine for 7 days before.

We introduced kidney beans and my son had no problem during the challenge. However, the next day, he threw up after eating chili with kidney beans. A couple days following - exact same result. We all sighed and put it back on the list of foods to avoid.

This time, thankfully, things were different. Both pinto beans and cannillini beans went off without a hitch.

Did my son really outgrow beans this time? Might the FAHF-2 have helped? Or were we just avoiding two varieties that he could have tolerated all along? We don't know.

It's also early days with beans. We could have the same experience as several years back, where he succeeded in the challenge but really can't tolerate beans in his diet.

My husband had a gleam in his eye last night. He said to me for the first time "do you ever wonder if he's just not allergic to anything any more except peanut?" Yes, I wonder. It's time to do an open milk challenge and find out.

Even if he fails, even if the FAHF-2 had nothing to do with any of these successes, I'm still incredibly grateful. The clinical trial didn't just change his body; it changed how we all think about this stuff. We're just not as afraid. (I actually went to bed and SLEPT while his second set of bean challenges were going on!) We understand now that our fear was as big a burden as the allergens. And, we're pushing harder to work through this stuff, even when it's incredibly hard to find the time and emotional reserves to do it.

Yes, I'm grateful. Happy Thanksgiving to all of you celebrating this week!

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Taking The High Road With Food Allergies (Sometimes)

I was getting all ready to write a post about how grateful I am. You know...one of those count-down-to-Thanksgiving posts where I list all the people or things that have helped me along the way.

And I am grateful. Really. Having virtual friends who have traveled this same food-allergy road is a wonderful gift. I can name so many times when my panic and frustration were alleviated by someone I've never even met in real life, but who took the time to give me a tip, or to console me.

But frankly, my lovely gratitude post went out the window when I received this email from a relative:

What can we bring to share? I have some ideas: Sweet Potatoes glazed with Chutney and Ginger, Green beans with Dijon and Caper sauce, Creamed Green beans with Dill sauce, or whatever you request.   I am aware of [FAB's son] dietary restriction.

My son is allergic to beans. We avoid all beans. Even green beans. The doctor was surprised by this, as green beans are the least allergenic of the bean family, but we even went through the exercise of an in-office food challenge just to prove to everyone he really had developed an allergy. 

That was 14 years ago. 

This particular relative has been at most Thanksgiving and Christmas dinners over those 14 years. She has brought countless problematic dishes. She has said things like "well, a little won't hurt" and "oh, I don't think it has anything he can't have!" My son has been told repeatedly that her dishes are completely off limits for him, no matter what she says.

Nothing says Thanksgiving
like vegetable tofu lasagna!

But here's the kicker: the emails goes on to talk about HER dietary restrictions! You see, she's found the God of Dietary Control over the last few years. She no longer eats animal products. She no longer eats carbs. SO...you guessed it...this email was not really about accommodating my son. This was a not-so-subtle hint about ME accommodating HER.  

Which I will. 

I always do. I have a sister with diabetes who has to count all carbs and watch all refined flour, rice and sugar. I have a brother who doesn't eat carbs at all. I have people who won't eat fish, lamb, mushrooms, mint. I accommodate them all. In many cases, I am only paying back their own care and kindness to my son. 

In this situation, I am clearly not paying back, since she's been so gleefully unaccommodating over the years. So...I will grit my teeth a little and pay it forward, in the hopes that some day, there will be a person out there like me who will accommodate my son even when it's annoying and difficult and she really has a million other things to do than make a vegetable, carb-free tofu lasagna.

Earlier this year at a wedding shower, another sister-in-law (I have a BIG family) who has never attempted to accommodate my son announced how proud she was that people complemented her on her wonderful Christmas cookies. She went on to say "So-and-So even said they were better than your mother's cookies!" I gently reminded her that Grandma's cookies did not contain real milk and butter, and haven't in the 18 years my son has had a milk allergy. It wasn't much of a contest. 

I never want these people to feel how awful it is to stare at a table full of food and to know you can only eat the one thing you brought yourself. To know it's your life and even some of your relatives don't love you enough to ask how to help you, how to include you.

Can I mention the wine when we
all say what we are grateful for?

I am trying to be grateful that I have learned the hard lesson that not everyone is always kind, and we shouldn't base our own life choices on what others do or don't do.

But can you really blame me if I just have a tiny thought about spreading lard through those tofu lasagna layers? 

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Best Food Allergy Tweets/Posts From 2013 ACAAI Meeting

Sorry, guys...I've been very busy the last couple of weeks, but just over a week ago one of the largest allergy and asthma conferences, the annual American College of Allergy, Asthma and Immunology, was tweeting its brains out.

Here were the tweets and (virtual) presentations I thought were most interesting:

ACE inhibitors are often used to treat high blood pressure. I believe Lisinopril was the one specifically mentioned. This goes hand in hand with the idea that older patients, especially men, can see changes in the severity of their allergic reactions as they age.

Here's an answer on the question many of us asked about component testing. Just as with RAST, the number itself doesn't matter; just the positive result.

Gross! But yes, give your kids the bobber after the dog/ brother/ mailman licked it.

Conversely, tree-nut-allergic individuals have a 30% incidence of concurrent peanut allergy. 

So stop blaming yourselves, FA mommies! I've said this consistently - Mother Nature would not rig the game so babies needed to be given certain foods at certain times. Our existence on this earth has been too precarious to count on that type of consistency. 

Part two of STOP BLAMING YOURSELF! It doesn't matter what you ate. It doesn't matter what you fed your baby. We don't know how sensitization happens, but it doesn't seem to be through the food itself.

Other summaries and presentations you might like:

• Fast foods associated with an increased risk of allergy
• Climate change may be the culprit in allergy/asthma increase
• Defining allergy fact from fiction (this may be a helpful one to pass around with the turkey!)
• Egg allergy and the flu shot from Sloane Miller - get the word out! Everyone needs a flu shot!
• 13 things your allergist won't tell you 
• Myth vs. Fact: food allergies
• The high cost of food allergies
• Too few food allergies confirmed by oral challenge
• Great summary of literature and the specific food allergy research (thank you, as always, Ves Dimov!)

If you only read one, read that last one.

Happy Wednesday!

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Magical Thinking and Food Allergies

So we got our FAHF-2 clinical trial email notification this week.

No, it's not the trial results. It was just a brief little note:

We are pleased to let you know that study participants have completed all study visits and we are now able to inform you of which treatment arm you or your child were part of (active or placebo).

[FAB's kid] was on active treatment medication.

At this time we can only provide you with your treatment assignment.  We are unable to share any information pertaining to other study participants.  Once the data is fully analyzed and peer reviewed, we will be able to share the overall study results. 

So...good. We weren't crazy.

The problem is that history is always written after the fact. While you're living your way through something, cause and effect are never clear. When people ask us whether the medication has made all the difference in my son's life, I have to just shrug and say "I don't know." There HAVE been some major changes since last winter:

• He's now eating all soy (including soy cheese) without restriction. 
• He's eating baked milk in everything without issue. (The only thing preventing us from introducing baked cheese is our own fear and busy schedules.) 
• While I know some of you really do not like the concept, he is eating "may contain" for peanut without any issues at all, which has significantly increased the number of processed foods available to him, especially chocolate. 
• He's started to expand his list of restaurants. While we're still not at the point (and probably will never be) where he can just eat something without asking about it, we no longer worry about cross-contamination.

What we don't know is whether we can attribute all that change to the medication. Is it possible that he had already outgrown soy, that he would have tolerated baked milk at this level without the medication, that "may contain" was always o.k. for him, and that we overreacted when it came to restaurants and cross-contamination?

Of course it's possible. Perhaps even likely. 

On the other had, we did see a measurable, really significant change in his tolerance to peanut. It is just as possible that the process that created that new tolerance also affected his response to these other allergens. But we'll really never know for sure, because the other allergens were not measured as part of the trial. 

It's so easy to see how food-allergy families can have such a diverse approach. The actual evidence we have for severity and tolerance may consist of a single reaction when our child was very young. In the years that follow, some people choose to believe their child's allergy has magically disappeared. Others may re-write it as a completely out-of-control, always life-threatening monster.  Our doctors know nothing. We know next-to-nothing. But, being human, we make up stories to fill the gap. 

Thanksgiving is just around the corner again. The spread of food always prompts the inevitable questions: 

How are his allergies? Did the study cure him? Can he eat what I brought now? Will he be able to take the medication again? Do you want him to do it if he can? Was it worth it? Do you think it worked? Will it work for others? 

Our family will be challenged to write the story that goes with this clinical trial. People really hate the very short story we've told up until now: we just don't know.

Everyone wants a definitive ending...even if we have to make it up. It's human nature. 

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Inclusion and Food Allergies: How Far Is Too Far?

I enjoy hanging out on Reddit. It feels a little like going to a teenager zoo and I consider it an important study tool in the quest to understand my own teens. Yes, there are other people there who are 40+, but for the most part, Reddit is a collection of teens and 20-somethings with too much time on their hands and often a Lord of the Flies mentality.

So I was not all that surprised to run across this one:

The original poster went on to say:

I was the only one in the neighborhood giving out small goodie bags of bite size butterfingers, recesses peanut butter cups,starbursts and other assorted chocolates during halloween. This woman comes back to my house and got angry at me for giving her son candy with peanut butter in it. He ate some and he was having an allergic reaction. How the hell am i suppose to know what her son is allergic to. It wouldn't kill her to be a good parent and monitor what her kid eats instead of blaming me.

I read through some of the almost 2000 comments, trying to keep my anger in check. The oldie but goodies were all there:

"if touching a nut kills you, you’re supposed to die"

"I went to elementary school in the 1960's. I don't remember anyone having any issue at all with foods."

"Your niece might need to be homeschooled..."


Don't get me wrong: I think the mom who did this made a big mistake. I do understand; in the panic of the moment, I have done some crazy things, including calling a food manufacturer in the middle of a reaction to ask about the ingredients.  But suddenly, I had a small moment of insight of how that Roma family in Ireland might have felt after the police took away their child because she looked too blond to really belong to them. Just because one person in your community does something questionable, does that make it o.k. for the rest of society to pour out their hate on all members? Where does all this hate come from?

No, it's not o.k. that the mom blamed the neighbor for her child's reaction. But it's really not o.k. that so many people are willing to jump on the hate bandwagon as a result.

My Reddit comments to that effect were just drops in the ocean, and I suspect a larger response would only make us look crazy. What is the answer? How do we combat this prejudice without seeming over-reactive?

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