The Sensitive Gourmet

Normally, whenever we go out and know we’ll be away from home at mealtime, we pack along safe foods for Annika.  I usually take bread, ham or some other type of meat, a banana or two, a sliced apple, various berries, grapes, raisins, fruit leather, crackers, saltines, cookies or anything that is nutritious and easy to pack in a small lunchbox that accommodates a freezer pack.  If we plan ahead where we’re going to eat, I will scout something out that is safe for me by looking at the restaurant’s menu online.  Chain restaurants are often a safe bet, because they typically post their nutritional information on their website.

What’s more difficult is when we don’t plan to stay out past mealtime, but we get caught out with a kid in the back seat screaming at the top of her lungs “Mama, I’m hungry!”  What then? 

Today was one of those days.  It was rainy (imagine that, rain in Seattle!?), so we decided to take Annika to the Seattle Aquarium for some quality indoors family fun.  We stayed until closing and left with the intention of driving home.  We get in the car, start driving, and about a half mile down the street Annika informs us that she really, really, really needs to pee right now.  Oy!  The closest place on the way was family friendly Seattle Center.  Marc pulled up in the turnaround under the Space Needle and I (grumbling loudly) pulled Annika out of her car seat and we trotted off to the Center House, Seattle Center’s general gathering place which houses the Seattle Children’s Museum and a food court and has at least four bathrooms.

When we walked in, the place was packed.  The miniature old Seattle town train set was set up with two trains (Annika made sure to tell me), the entire place was decorated for the holidays.  We had forgotten that the Seattle Center Winterfest, one of the many annual festivals held there, had started this morning.  There was a live dance group on stage performing traditional music of Ghana and other parts of Africa (a continent).  Transfixed, Annika forgot how much she needed to pee, and instead wanted to sit down and enjoy the show.  I dialed my husband and told him that we were stuck.  There was no way I could have dragged the child out of there without a major tantrum.  Besides, there was no reason to do so.  He parked the car and joined us some short minutes later with Max in his stroller.  I soon realized it was dinner time, so I took off to scout out some safe eats. 

I decided to try the food court’s burger and fries joint, Quincy’s Charbroiled Burgers, first.  (Disclaimer:  I don’t claim burgers and fries are the most nutritious, just that in a pinch, it’s a simple, and therefore potentially safe option.)  I approached the counter and asked if they had nutritional information on hand.  The woman grabbed a three ring binder that was in a holder on the wall close to the register, and handed it to me asking helpfully “do you know what you’re looking for?”  I said yes, and dove into the binder.  It was a pleasant surprise.  Someone had painstakingly cut out the label out of every possible ingredient on the restaurants menu, from burger buns, to patties, to every spice, sauce or relish they utilized.  They labeled each by hand.  There were so many labels that I was having difficulty locating the burger bun information, and another woman (she looked like a manager) approached and asked if she could help me out and what allergen we were trying to avoid.  I was impressed that she was informed and that she cared and told her so, and she smiled and said that they saw a lot of kids with food allergies.  I explained that I needed to know whether there was dairy or soy (typically as whey or soy isolate protein, soy flour or some binding agent) in their burger patties, buns or fries.   She said no, but did tell me that a spice they used called E3 that they typically sprinkled on the burger and fries did have soy, yeast and dairy, but that it could easily bet omitted.  I ordered, and waited.  I was still apprehensive.  Worried that someone in the back could make a mistake.  But no, when our number was called, the man who handed us our burger and fries order said to me “we left off the spice on the burger and fries”.  I was impressed, so here’s my enthusiastic plug for Quincy’s Charbroiled Burgers for giving a hoot about kids with food allergies. 

My only complaint is that their fries portion was so generous that we could not avoid that tantrum after all, since Annika insisted on eating all of the fries, and when I took them away afraid she’d get sick or end up with a bad bout of reflux later tonight, she burst into tears trying to convince us that she was still hungry, hungry like a wolf! hungry like a big hawk!  hungry like an eagle!

That’s unfortunately not always the case.  On another occasion when we needed to make a pit stop, we had a very different experience.  Hoping for another safe burger and fries, I walked into Ruby’s Diner.

When I asked for nutritional and allergen information, the cashier looked distraught and said she needed to call the manager.  The manager arrived and said looking genuinely apologetic that it was company policy *not* to provide nutritional information.  I was very surprised, since I thought that by law restaurants had to provide nutritional information (I made a mental note to follow up on that).  She said she was very sorry, but the information was not even available on the company’s website, or she’d gladly print it for me.  She said it was recently taken off.  I checked the website, and sure enough, the “Nutrition” tab opens a PDF which is a bunch of marketing lingo about Ruby’s  commitment to quality with their usage of the best ingredients, etc., but nothing about nutritional content or allergens.  Well, so I’m voting with my wallet.  Not going there EVER again.  And telling others not to.  And by the way, there’s a feedback link on their website titled Ruby Wants to Know, so if you feel the same way, let them know!

Luckily for us, Kidd Valley, a local burger chain was just around the corner and their counter personnel was sympathetic and had a binder listing allergens in their burger components and fries.  So that’s another safe stop to add to our “quick and safe” list.

But while I’m big on supporting our local businesses, most typically when I get caught on the town without a snack for Annika, I look for the closest Wendy’s instead.  It helps that I happen to own one of them fancy iPhones with GPS, so I can Google map my route from whenever I am at the time.  And yes, I do mean Wendy’s, the fast food chain that is ubiquitous almost everywhere (ironically less so in our area). 

Wendy’s is very responsible about labeling.  On the website they feature downloadable PDF’s listing nutritional and allergen information for every component of their meals, from buns to sauces and dressings.  They also have several gluten free menu items.

So while in a pinch we may not always eat out gourmet, we can eat out safe.  Today we added Quincy’s to our list of local safe eats.  It is obvious that their management cares about their allergic customers.  I know we are going back there next time we’re out on the town without a lunchbox. 

To quote a famous last century lyricist, “you can’t always get what you want, but if you try sometime, you just might find, you get what you need!”  And if you can’t, vote with your wallet and your feet!

Today is (was) Thanksgiving.  Like many other families, we were invited to spend it with friends at a pot-luck style celebration of good eating, good drinking and good conversation.  We walked in late.  It takes one hour on a good day to get out the door with two kids, add one hour for food preparation, and you get the picture.  So, everyone was already eating, sitting at a table laden with dozens of dishes.  There was the turkey, and then casseroles, gratins, cookies, pies (I counted three pumpkin pies), a pecan pie, a roulade and lots of other mouth watering goodies.  I scanned all the dishes hopefully.  There had to be something I (and Annika) could eat.  Unfortunately most of the dishes were off limits.  Dairy is pretty much the ubiquitous ingredient in nearly every Thanksgiving dish, whether it’s the butter basting for the bird, cream in the green bean casserole, butter and milk in the cookies, pies and cakes, cheese in the macaroni and cheese and topping anything gratin style and whipped cream on the pumpkin pie.  Eggs are probably the second most frequent allergen and nuts are right up there, hiding in chocolate chip cookies and very visible in pecan pies.  I was just thankful that we were not allergic to wheat or gluten or other grains, vegetables of fruits, or that would have taken everything off the menu.  Annika and I were able to eat a few things, but mostly we stuck to what we brought, Marc’s famous Chinese chicken salad (today he substituted turkey for a Thanksgiving interpretation), with fried wontons and rice noodles, a recipe passed down in his family and my “special” stuffing (the secret ingredient is liver) that I had modified this year to eliminate allergens, so it was less than it’s normal spectacular.  The hosts made a special soup for Annika, they actually named it Annika soup.  It was free of all her allergens, and we were so very thankful that they made it for her (us – I had it too).  

And then there were the dogs.  In particular one dog that was very friendly and wanted to lick everyone.  The owner saw Annika looking at it and invited her to pet him.  I immediately stepped in to spoil the fun and told the woman that Annika was allergic to dogs.  She looked at me and cheerfully said “he’s a Bichon Frisé, he’s hypoallergenic, I got him because my sister is allergic too”.  I had heard of hypoallergenic (supposedly) breeds, specifically the Bichon Frisé(although I’ve never had contact with one before) so I let Annika pet the dog and watched for a reaction, like hives or wheezing, both reactions to dogs we’ve observed in the past.  That didn’t happen.  So of course I had to follow up on this when I got home. 

Here’s what I learned.  According to Wikipedia, “hypoallergenic dog breeds or crossbreeds are alleged to be safer for allergic persons than other breeds”, but that’s when things get complicated.  It seems experts don’t agree on the existence of “hypoallergenic” dogs and really most think it’s either chance, specific to each individual, or wishful thinking at best.  A dog allergy is an allergy to a protein secreted by the dog’s sebaceous glands that can be found in the dander (shedding skin) and saliva.  The theory behind hypoallergenic dog breeds is that they produce far less of that protein and spread it around less because they don’t shed (or shed little).  But a highly allergic individual should react anyways.  However, as in all things concerning the immune system, it seems the evidence pointing either way remains nebulous.  One expert noted that it appears that specific individuals may become immune to a specific dog (not a specific breed) for unknown reasons.  If that’s the case, I thought, maybe there is some hope for our kitties?  I have this (clinging to hope) theory that Annika is immune to our cats.  But that’s for another day.  Today, we are celebrating petting a Bichon Frisé and escaping unscathed.  There is hope then we may yet have pets in our life.  And that’s something – along with good friends, good conversation and (some) great food – that I am thankful for today.

I already know more than the average person about managing food intolerances, reflux, asthma and environmental allergies because I have been attacking these issues for 3.5 years now, but with Annika’s recent diagnosis I now know there’s a lot more we need to learn and understand about food allergies and the immune system. 

And then there’s Max, who started reacting to the same allergens in my breast milk when he was three months old.  He gets eczema, hives, cradle cap, diaper rash, gas, bloating, reflux (we suspect), diarrhea and constipation, so we expect that he’ll follow a similar pattern.  I’m currently avoiding peanuts, tree nuts, dairy, eggs, corn and soy and that seems to make his symptoms go away.

So I thought to myself, here’s something I can blog about and mean it.  I have been planning to write a food blog for the food allergic for a while now.  My husband and I both love to cook gourmet foods and eat out.  We wouldn’t go as far as calling ourselves foodies, but we do like a good meal, and our area (Seattle) has lots of great places to eat.  But once we realized Annika was reacting to so many foods, going out to restaurants as a family became a stressful endeavor.  We have to ask about ingredients, ask for substitutions and despite that we are aware that  every time we do this we engage in “allergen roulette” because of honest mistakes by kitchen staff, lack of care or simply cross contamination.  Even shopping for ingredients to cook at home was no longer straightforward.  We’ve become a family of label readers, checking every ingredient to make sure it’s all safe for Annika and Max.  So I had hoped to create a guide of local allergy friendly restaurants, food retailers and brands.   I thought, perhaps naively, that once restaurants were given marks for giving a hoot (or not) about their food allergic clients, they’d step up and try harder.  I still think that’s a good idea, but first I want to understand what we’re up against. 

I want to learn how best to manage Annika’s and Max’s symptoms and avoid the allergens to keep them healthy.  In order to do that I want to really understand the science behind food allergies, the theories about their origins and what solutions are out there to manage food allergies.  I also want to understand the laws and politics governing food labeling policies and get on top of the lobbying efforts by organizations like FAAN (Food Allergy and Anaphylaxis Network) and others.  

And as I learn, I might as well do it in a public forum.  Who knows, maybe what I learn and write about benefits another parent or family member of a child with food allergies, reflux or asthma?  I plan to locate, collect and link resources that I find useful so that others who come to this side may be better prepared should their child be diagnosed with food allergies, GERD or asthma.

That’s what Annika’s Pediatrician, Dr. H. said to us before she handed over the results of her RAST test.  RAST, short for radioallergosorbent test is a blood test that looks for IgE antibody mediated immune system reactions to specific allergens.  It helps identify Type 1 hypersensitivity, which means an allergy in which a reaction occurs within seconds or minutes of contact with the allergen, whether through touch or ingestion.  The most extreme reaction is anaphylaxis or anaphylactic shock, an acute systemic reaction involving the dilation of blood vessels, a sudden drop in blood pressure and swelling of bronchial mucous membranes leading to difficulty breathing.  This can result in death within minutes unless the patient is treated with a dose of epinephrine and taken to the ER for treatment.  

And no, I didn’t  freak out.  In part because I was surprised and confused.  Given Annika’s history of reflux and asthma and food sensitivities we expected something to come up.  She had previously tested allergic to peanuts and sesame seeds and dogs, but her other reactions were not even considered Type 1 “true” allergies a couple of years ago.  So sure, we expected to see a few high peaks in her results.   What we got instead is a whole mountain range, with several peaks.  That made no sense.  Essentially, she reacted with high IgE counts to everything we threw at her.  Beyond the obvious (peanuts, tree nuts, dairy, soy, sesame) she tested highly allergic to green peas and lentils and also corn and chocolate.  Her scores were all in the 3-5 range (0-2 is non-allergic, 3 and beyond is allergic, with a top score of 6).  Since the total levels of IgE in her system were so high, we were told to pay attention to only the 4s and 5s and for the moment avoid but not worry too much about the 3s. 

The cat allergy was a shocker, since she grew up around our three cats and never reacts when she touches or plays with them.  But there it was, she scored a 5 there.  Marc said right away “we need to get rid of the cats”.   Obviously, I will do what is right for my child, but part of me is not convinced this is the case, since she NEVER flares when in contact with them.  The kitties are my furry babies.  They were here before I had my children.  I can’t just “get rid” of them before understanding what this all means and what all our options are.  I have seen evidence (and read studies) about people who were allergic to cats in general but were immune to their own cats.  I’m a case in point, actually.  So until I get to the bottom of this, the cats stay.  As another parent of a child with allergies wrote to me when I asked for advice on the Parents of Food Allergic Kids (POFAK) forums on the Kids With Food Allergies website:

“Your child is the same darn child they were the day before getting results” and so “freaking out is not the answer”.