Tigers In Our Midst: Groupthink, Anxiety and Allergy Communities

When my son was around four, he started developing "mystery" reactions to foods he had eaten all his life. My husband and I were absolutely panicked; in addition to the stress of the reactions, many of the suspect foods were staples in his somewhat-limited diet.

We pursued allergy testing, but the doctors' conclusion was something called "idiopathic anaphylaxis", meaning reactions with no known cause. They told us it might be food, but it also might be exercise...or something environmental...or a combination of things. So, basically, go forth and live your life with the snarling tiger of an out-of-the-blue reaction always focused on your shoulder blades. Pounce!

Understandably, it was at this point I sought out an on-line help community, thinking that someone else must have gone through this. Luckily, some of you had. While no one had been through our particular flavor of crazy, you gave me enough tips and experiences that we finally did identify what was going on: an allergy to a seed-pod protein found in almost the entire legume family. Problem solved! Reactions averted!

However, there was a price.

I stuck around the community, on and off, for years. Eventually, I ended up running it for three years. What that meant from a practical perspective is that I was there every day, reading as many posts as possible to identify potential problems/trolls.

Little by little, as I spend more and more time there, I felt the eyes of a different tiger drilling into my shoulder blades: groupthink anxiety. Some of you may know what I'm talking about:

• What do you mean you give Benedryl at the beginning of a reaction? Epi-Pen, right away, no matter what!

• Your child is having so many reactions! Maybe you're taking too many chances.

And, always underneath every surface-helpful but ultimately-judgmental post:

• What if you wait too long/take a chance/do something wrong and your child dies?

I've read the list of everyone who ever died from a food allergy. I've emailed with the parent visitors whose children passed away. I'm not saying this is a zero-risk situation.

However, it got to the point where I was questioning whether I was a bad parent to allow my child to attend a sleepover. Questioning whether I should be forcing the school (ha!) to institute a peanut ban, even though my son had never had a contact reaction. Whether touching the outside wrapper of a peanut-containing candy bar was really a risk. And, through every discussion, ran the tiger of what if you do something wrong and your child dies? The groupthink always gravitated toward the most extreme comfort zone and constant immersion made it very hard to keep my own boundaries.

Our on-line communities serve an information and support purpose that's very difficult to find in the physical world. However, for me, it also reinforced anxiety in a way that was not healthy.

It all came to a head when we started re-introducing some of those foods to my son to which he had showed an allergy at age four. The inevitable consequence of food challenges and re-introductions is symptoms. Itchy mouth. Funny feeling in the throat. "Push through it," said our doctor. My God, what are you doing, give a fricking Epi-Pen and stop this high-risk behavior before your kid is another statistic was the voice I heard in my head.

I quit the community over a year ago in the hopes of taming the anxiety tiger. However, I still hear its voice every time I hand my kid a food containing baked milk (which we were cleared for last summer). It's what makes me hesitate to keep the dosage consistent. It's what makes me obsessively worry every time he coughs or clears his throat after he eats it.

So...I'm back to where we were in preschool, feeling the eyes from the tiger of random reactions (this time from problem foods I'm choosing to give him) drilling into the back of my shoulder blades. Facing off with Random-Reaction Tiger is Constant-Anxiety Tiger, who I've knowingly fed for over 10 years in exchange for invaluable information.

And right in the middle is my son, who watches my face each time I give him his milk-containing food. And each time he considers going out with friends...or asking a girl to a dance...or trying to figure out how college is going to work for him. He sees the tigers. He's anxious and afraid and really, really angry, and I don't blame him one bit.

Tigers suck.

College with Food Allergies...Maybe?

My son will turn 17 in a few weeks. That means we're entering the "College Chute." Where we live, 90+% of the kids go to college and the school is very directive and disciplined about getting them there, so junior-year college tours are strongly encouraged.

We did our first tour this weekend at Carthage College, a very nice little liberal arts school about an hour south of Milwaukee. The draw of Carthage is its proximity to Lake Michigan, which is...well, if you trip going to class, expect to have to change your wet clothes. It's only about 2500 students so we didn't know what to expect: would its small size make it less or more accommodating of students with special needs?

The good news is that we did find some awareness on campus. Our tour guide indicated she had a friend with gluten allergy and that the head of food services meets with kids with special dietary needs and then provides special food for them throughout the year. The challenge is that it isn't going to be carefree. My son will have to plan his meals in advance and notify the cafeteria. However, if they can truly prepare safe meals with just a little notice, that's a huge win and relief for us.

The school also has an alternate eating facility, made up of several food modules including a Baja Fresh. I am not familiar with this chain, but it does seem similar to a Chipotle, so we're hoping this might be an option for him as well.

Finally, the school is only 40 minutes from where we live, so it would be possible to drive groceries or frozen foods up. There are no cooking facilities (the dorms are VERY old and small), but kids are allowed to have cooking appliances in their rooms if they do not have a coil. That means microwaves, hot pots and even electric frying pans are o.k. As my husband and I have discovered in countless hotel rooms over the years, you can do a LOT with a crock pot and an electric fry pan. (Heck, we even used an iron once in a pinch.)

So, all in all, not much to bitch about this weekend. Well...a few things (after all, it is the point of the blog). The hospital is farther than I'd like, there's no on-site nurse most of the time and their response to emergencies is "call 911"...but I think that's probably going to be par for the course wherever we look.

I looked in vain through the folder for the pamphlet entitled "Parent Dorm Options", but there was only stuff for him in there. The more I think about it, the smarter I think our high school is to push these early visits. He's fine with the concept of leaving home, but God knows I need some time to process it all!

Want To Avoid Allergies? Keep Your Kids Poor and Dirty.

What is it with newspapers and their crazy (one might even say prejudiced) conclusions about food allergies?

The latest study "summary" I read was entitled "The Downside of a Good Education: Food Allergies." The article opens with the following shot over the bow:

"People from well-educated families are almost twice as likely to suffer from some dangerous food allergies as others — possibly because their bodies’ natural defences have been lowered by rigorous hygiene and infection control, suggests a new Canadian study."

Really? The article seems to be saying that those with less education are somehow dirtier than the rest of their brethren, and therefore better protected. Can that really be true? And is it really what this study said?

To find out, I looked up the original study, which has a much less incendiary title of "Demographic Predictors of Peanut, Tree Nut, Fish, Shellfish, and Sesame Allergy in Canada." What does the article actually say, you ask?

"Peanut, tree nut, and sesame allergy were more common in children, while fish and shellfish allergy were more common in adults. Tree nut and shellfish allergy were less common in males. Shellfish allergy was more common in urban settings. Higher household education was associated with increased likelihood of allergy to peanut, tree, fish, and sesame although it reached significance only for tree nut. All food allergies were less common in immigrants although large CIs preclude definitive conclusions except for shellfish." 

The study goes on to speculate as to why this might be the case. Some of the reasons given are those oft trotted out: more antibiotics, more hand washing, less overcrowding. You know - poor people being dirtier. However, the studies cited at the end of this paper give an intriguing peak at other identified risk factors:

• Vitamin supplementation in exclusively formula-fed children. 1
• Cutaneous (skin) sensitization. 2
• Common epitopes from soy formula triggering peanut sensitization. 3
• Fungus on walls at home and renovation/painting in the house during pregnancy. 4

A final study I've never forgotten is the markedly regional skew (to the northern states) in the number of Epi-Pen(r) prescriptions. As the paper's brief summary notes, this may be linked to Vitamin D deficiency.

So...besides overcrowding and dirt, how might these interesting tidbits tie together with parental (and specifically maternal) education level?

• Better educated (and therefore presumably wealthier) parents can better afford vitamin supplements.
  

• They may choose more expensive skin products for their children that contain sensitizing plant proteins.
  

• They may try more expensive soy formula options if milk-based formula causes sensitivities.
  

• They may paint and remodel more prior to their baby's birth (due to availability of money/home ownership).
  

• They may be more likely to use sunscreen (potentially causing or exacerbating Vit. D deficiency).

Are any of these the smoking gun? We'll never know if researchers and news outlets stop at the cultural conclusion that poor people are simply dirtier.

"Unwittingly." I Do Not Thing That Word Means What You Think That Word Means.

I had a whole other topic for today, but then I ran across this article from JAMA: Treatment Rather Than Avoidance May Be Within Reach for Children With Food Allergies. There's a section in there that really burns my butt:

"A number of hypotheses attempt to explain the rise in food allergies in the United States and other developed countries. One is that parents may have unwittingly [my emphasis] made their children more prone to food allergies by delaying the introduction of potentially allergenic foods in their babies' diets and following World Health Organization guidelines to exclusively breastfeed for the first 6 months."

Are. You. F-ing. Kidding Me? Why are the parents the unwitting (which I am choosing to define as "wit-less")  ones? Where's the line that says "oops, sorry, we doctors and scientists may have given you the wrong advice." 

Our doctor told us, straight up, avoid peanuts and tree nuts with subsequent children. Having done quite a bit of reading on the topic, I did not follow the advice, and I still do not believe the "window of introduction" for foods has anything to do with food allergies. Mother Nature is not that fickle and too many of us recognized reactions in our children to allergens in our breast milk long before these allergens manifested in full-out reactions to solid foods. But it just makes me crazy that now another entire generation of food-allergic moms is going to question whether their children's allergies are their fault. 

Repeat after me, scientists and doctors: correlation is not causation. There are hundreds of other possibilities for why Israeli children do not exhibit peanut allergy at the same rate as American children.

The smoking gun that I see is the difference in "living foods" and the subsequent colonization of gut microbes. Americans have lousy guts because we no longer eat a traditional diet, using foods that aren't processed or so long from the farm that they're already "dead" by the time they reach us. Don't believe me? Consider this study from 2011 that shows MicroRNAs from the foods we eat pass intact through our guts and reach our blood stream. 

I've been pulled down some odd paths in my life, and this (admittedly somewhat granola) belief in the power of foods to heal is one of them. Unfortunately, it's a road our physicians and scientists have little reason to travel. 

Buried in paragraph eight of this article is this line: "Bacteria in the gastrointestinal tract aren't regulating allergic immune responses as effectively as they did in the past, so children are reacting to more potential allergens." Funny how that never ends up the headline.  

Gluten-Free, Aisle 9...wait, WHAT?

We've all heard the stat: 7% of kids in the U.S. now have a food allergy. My calculator doesn't even have enough digits to figure this out, but I think that translates to 21 million children. Since cooking with food allergies is a family affair, it presumably affects their parents and siblings as well, so let's say, conservatively, 50 million people.

You would think 1/6th of the country would give our merchants pause. However, I can assure you it does not.

We've lived in the same small town for almost 13 years now. There is a family-owned grocery store right around the corner. They make their living by specializing in foods you can't get anywhere else and charging through the nose for them. When we moved in, my husband was ecstatic. He assumed our special food needs and this little store were a match made in heaven! Little did we know our kind weren't welcome there.

After several requests for specialized chocolate, I finally stopped in one day to talk to the manager to see if there was any hope. "We already have 50 different kinds of chocolate," he replied. "We aren't going to carry another one when there isn't enough demand."

"But they ALL have nuts!" I sputtered. "And surely, with all the peanut- and milk-allergic kids in this country, there's demand out there!"

Several "sorry, lady" mumbles later, I gave up. Over the years, a small shelf at the store, wedged between "Oriental" and "Olestra Products", did eventually fill with a few allergy-friendly things, but no chocolate. Never chocolate.

Fast forward to last year. I rarely turned down Aisle 9 because, unfortunately, the few allergic items they carried also contained other allergens my son could not have. But...hope springs eternal, so one day I turned.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!GLUTEN-FREE HEAVEN!!!!!!!!!!!!!!!!!!!!!!!

Everywhere I looked, DOZENS of products without gluten. There were cakes, cookies, candy, sports drinks, pasta... Apparently I had unknowingly followed a trail of gluten-free breadcrumbs and now I was Gretel, staring at the witch's candy house.

The allergen-free shelf? Now two rows down and condensed to one corner.

Don't get me wrong. I understand celiac disease is a very debilitating disease. But I also know that, best guess, it only affect one in several hundred people. This aisle was not about food sensitivity. This aisle was about trendiness.

(Trendiness. Allergies. Trendy. Allergy. Why can I not make these words go together by repeating them over and over? Must. Keep. Trying.)

I've since learned that peanut allergy was OUT for 2010 and celiac was IN, courtesy of the Washington Post. (Ranking what's out, what's in as 2010 dawns)

Food fashion. At least I have an explanation. I'd hate to think my grocer was just an insensitive asshole.

Fantasy Dinner Party

There's a special circle of hell reserved for adults with their own food allergies who do not support our children.

One of the worst cases of this in my own life was my son's jr. high principal. By the middle of 7th grade, my husband and I were fed up with all the places food was showing up in the supposedly "mostly food free" school, so we requested a conversation with the principal. Her response: "I know exactly how your son feels because I, too, have an allergy." To what, you ask?

Kiwi.

Really. She was equating avoiding kiwi with avoiding milk, soy and peanuts. When we pointed out to her that our son was habitually excluded from school activities because virtually all the foods used contained milk, she shrugged and said the equivalent of "it will toughen him up for 'real life.'"

Which brings me to my fantasy: the end-of-year teacher banquet. Know what's on the menu?

• Fruit soup
• Kiwi and peppers sweet and sour chicken
• Summer lettuce salad (pre-dressed, of course, with a light, fruity, tropical dressing)
• Tropical fruitcake
• Kiwi lime pie

Doesn't it sound lovely? Oh, I'm sorry, what's that you said, Ms. Principal? You can't eat any of this food? Wow, that's a shame. However, I did save out this pack of PRETZELS for you. You can munch on it while you watch all your colleagues dig in. 

Yucking It Up: Hollywood and Food Allergies

The other day, I happened to catch a preview for the second season of a television show called "Portlandia." It was 30 seconds designed to be hilarious enough to inspire you to watch the series. And what's the go-to 5-second visual gag they knew the entire country could get behind?

You guessed it. Making fun of food allergies.

http://www.youtube.com/watch?v=PiNXXM2mn9Y

Hysterical! Always good for a laugh from everyone!

I see this everywhere I turn. Somehow, the possibility that our children could drop dead is the funniest thing people have ever seen. When I point out that dozens of shows use food allergies as the go-to laugh, people look at me blankly. Occasionally someone will say gently "perhaps you're oversensitive, dear."

Really? Would they feel that way if I laughed hysterically about leukemia? Snorted about cystic fibrosis? WHY is is o.k. for Hollywood to consistently portray our children as objects of fun?

The blown up face! Hysterical!  http://www.youtube.com/watch?v=aCDm_kI9p_g (Courtesy of "The Big Bang Theory")

The wuss who talks funny when he has a reaction! What a riot!  http://www.youtube.com/watch?v=X50SFJn3LD4 (Courtesy of "Friends")

The incredibly overprotected kid who also just happens to have multiple allergies! (Thank you, iCarly)

I see one of these at least once a month. And guess what? The laugh track is always, always Volume 10.

Funny.
 

A Little W(h)ine With Dinner?

Before my kids were born, my husband and I used to plan elaborate dinner parties with multiple courses. The desserts! And the wines! Oh, the wines...

Now the only whining happens before the guests arrive. I have never failed to issue a dinner invitation that isn't followed by "what can I bring?" from the invitee. You all know where I'm going with this. In a normal household, there would be the predictable exchange:

"Oh, you don't need to bring anything. Just yourselves is enough!"

"No, no, I insist!"

"Well, then, if you really must, how 'bout a [insert thing you least like to cook or that you think is least likely to screw up your menu]."


Of course, we don't live in the real world. My conversations always go like this:

"What can I bring?"

"Oh, please don't bring anything. I don't know if you remember this, but our son has multiple food allergies, so  we really prefer to prepare all the food ourselves. Really - just your company is all we need."


But it never ends there. Does it?

"Oh, no, really, I INSIST! What can we bring?"

"No, really, there isn't much that you could bring that I would feel comfortable serving him. It's so hard to know what ingredients are a problem. Please - just bring yourselves."

"I could pick something up! Should I pick something up? How about chicken? Does he like chicken?"

"No, really, there are very few prepared foods he can have! We really would prefer to make the entire dinner. We love to cook - we wouldn't be inviting you if we weren't prepared to cook."

"How about dessert then? I can make these awesome peanut butter cookies...oh wait, he's probably allergic to those, right? Shoot...I make them all the time."

"REALLY. Just bring yourself. You don't need to bring a thing."

"I just wouldn't feel COMFORTABLE unless I brought something."

"Fine...what about a salad?"

"Great! How about Thai peanut salad?"


Even if I manage to hold strong and head this one off, there's inevitably the "surprise" dish. So now I have the choice of serving a dish with unsafe ingredients that we'll have to corral all night, watching all the serving utensils to make sure people aren't double-dipping or accidentally dropping little pieces of nuts everywhere, followed by a Decon 5 level clean-up after they go.  Or, I can choose not to serve the dish and offend them.

And you wonder why I don't socialize as much anymore!

Christmas With Food Allergies and the Ho Ho HOs

Yeah, I know, it's several weeks after Christmas, but I'm still fuming over the comments. You'd think after 16 years of dealing with food allergies I would be used to this, but I'm not.

For you newbies out there who still need a translation guide...here you go:

• I don't know how you do this!
  Translation: I'm not going to do this.

• It would drive me crazy to have to read every ingredient. 
  Translation: what I brought will probably kill your kid because I didn't read every ingredient.

• Will he ever outgrow any of these food allergies?
  Translation: it's a pain in my ass to have to deal with this so I hope this isn't going to be forever!

• I just read in/on the [insert paper or website] that they have a treatment for food allergies now. 
  Translation: This article I happened to glance at confirms that you could do something about them if you wanted to and you must want to keep him "allergic" for some reason. Hypochondriac.

• So many kids seem to have allergies these days! We never had these kind of allergies when we were growing up.
  Translation: you're a helicopter parent and your kid's allergies are fake.

• How's he going to get along in the real world?
  Translation: you're making your kid into a pansy.

Do you have others you've heard? Feel free to add them in the comments!