The Sensitive Gourmet

Most religious celebrations include a feast or two.  Christmas is no different.  Christians around the world usually celebrate with a big family meal on Christmas Eve or Christmas Day (or both).  The feast typically includes special “only served on Christmas” dishes traditional to the particular celebrant’s geography.  Poland is no different.  And Christmas in Poland takes the inclusion of traditional foods to another level.  Depending on the region, the table for Christmas Eve’s Wigilia feast (from Latin vigilare,"to watch") may include as many as twelve unique dishes.  We never had that many dishes at our house, but my mother always made all the staple dishes.  The evening would begin with the sharing of the traditional oplatek, the Christmas wafer, traditionally exchanged by all present as a symbol of love, friendship, forgiveness and as a reminder of the importance of Christmas, God and family.  Then the feasting would begin.  Until recently the Polish Catholic Church designated Wigilia as a strict Black Fast, so back then meat was not allowed.  All the dishes were meat-free.  The  meal would start with two or three fish dishes, typically breaded or braised carp or some other white fish and pickled herring, the latter an acquired taste for anyone whose palate hasn’t been trained to tolerate it since childhood.  Next we would have barszcz (clear beat soup, in the United States spelled borscht) with traditional uszka (“little ears”) dumplings or mushroom filled flaky pastry, then the meatless version of Poland’s traditional hunters’ stew bigos a savory mélange of sauerkraut and dried Boletus edulis (porcini) mushrooms, spiced with black pepper and bay leaf, and finally, for dessert, aromatic makowiec poppy seed cake or yeasty sweet bread with raisins and other fruit confit, similar to the Italian Panettone.  Our Freethinker family kept to the fast for the main part of the dinner according to tradition, but typically bent the rules after, so we did enjoy typical Polish meat products, like ham, various types of kielbasa, including my personal favorite, the skinny kabanos (plural, kabanosy).

Since the more traditional version of bigos includes beef and kielbasa, my mother would typically make a meat-free batch for dinner and a “regular” meat and more batch for the next day (or rather week).  I love bigos.  I love kielbasa.  And I was really looking forward to Wigilia and Christmas goodies since most (if not all) dishes are free of the allergens I am avoiding. 

Kielbasa is a big deal in Poland.  We sourced our kielbasa and kabanosy for the occasion at a small local Polish food store, oddly enough called Kielbasa Euro Deli.  I didn’t even think about it as I bit into my kabanos with gusto, remembering as I did so the many times I’ve had it before, since early childhood in Poland.  Some six or eight hours later Max started arching like he had a tummy ache and he broke out with eczema and a telltale (stop reading now if you’re squeamish) diaper rash with pus filled bumps.  I had seen that rash before.  And it showed up every time I ate soy protein. 

I felt betrayed and angry.  Who dared to mess with *my* beloved kabanos?  What a travesty!  I knew that soy protein isolate (SPI) and milk in the form of whey or dry milk powder were frequent ingredients in processed Deli meats in the United States.  And now it has apparently snuck into my kabanos.  I was mad.  My child was suffering, my own stomach ached, and since kielbasa comes unlabeled, I no longer trusted the other piece that was still in the fridge waiting to be incorporated into the bigos.  I went out hunting for “safe” kielbasa.  Finally found one by Smithfield, but I had to go to three grocery stores.  Every brand I checked included the dreaded soy protein.  At one point I really feared that I was about to miss out on the central dish of the traditional Christmas dish.

So who put the soy in my kielbasa and why?  The “why” is easy.  Soy protein isolate (SPI) is used in Deli meats to increase their protein content, add texture, emulsify and as a fat replacer in “diet” or leaner cold cuts.   As the name implies, soy protein isolate is isolated protein, 90 percent minimum content.   It is a highly refined  or purified form of soy protein made from defatted soy flour.  It is produced through a multi-step process involving high pressure, several “washes”, extrusion and heat, so the resulting protein can no longer be considered natural.  The production process is more similar to the production of textiles, packing foams and plastics.  Like dairy and its derivatives and corn, soy protein has become ubiquitous and is an ingredient in 6o percent of foods in the United States.  Soy protein is big business.

The “who” is harder to answer.  The website of Alibaba.com, the world’s leading B2B e-commerce company whose online marketplaces represent a community of 36 million registered users from over 240 countries and regions includes what is probably the most accurate information and statistics on major suppliers of soy protein isolate.  It seems that SPI is manufactured in twenty different countries or regions.  Not surprisingly, China is at the top with 288 distinct manufacturers.  The United States has 17.  But there are some unexpected countries on the list, including Iran, United Arab Emirates, Brazil and Venezuela.

So if it’s in everything we eat, it must be good for you, right?  Not according to Mothering Magazine which has a great review article looking at research about the benefits and dangers of soy protein overconsumption.  Titled Whole Soy Story: The Dark Side of America’s Favorite Health Food, it discusses the many uses of soy and looks at research which debunks the “good for you” myth.   Most notably, soy protein acts like a phytoestrogen, potentially disrupting the natural hormonal cycle of infants (both male and female) and affecting the development of embryos of mothers who consume too much soy, potentially leading to early puberty and reproductive problems later in life.  Other “bad” health effects possibly caused by overconsumption of soy in infancy in the form of soy formula is the accumulation of toxic amounts of manganese in the brain (tied to ADD/ADHD) and its toxic impact on the thyroid.  And those are just a few of the negative health effects of soy.

So as much as it pains me to have to say that, I guess I’ll be avoiding kielbasa from now on, unless I can verify with the manufacturer that it’s free of soy protein isolate.  I just hope that I can find some so I may enjoy my Polish heritage without worrying about an allergic reaction.

How’s that for a parenting book title?  Or how about Sleepless parenting?  Well, they obviously don’t exist.  But they should.  What I really need is a book titled Practical parenting advice for the sleep deprived parent parenting the sleep deprived sick child on steroids.  Yup.  That about captures our reality.  Instead I’m left leafing through my library copy of Hal Runkel’s ScreamFree Parenting and feeling defeated. Being the calming influence in the household is a noble ideal, and I want to get there.  But why is it that this, like all other parenting books I’ve skimmed, was apparently written for a family where everyone gets eight hours of sleep a night, has the time and bandwidth to read parenting books, and is otherwise healthy and content?  (And why, for that matter, this book, like the majority of parenting books out there is written by a white male with a successful career built around parenting advice?  In reality, how many fathers are the primary caretakers, dealing with most of the day to day challenges of parenting a child?  I bet Mr. Runkel’s wife was doing the doing while he was (is) doing the writing and lecturing.  But I’ll leave that for another rant.)

Let’s get back to our situation and that, I suspect, of many families of food allergic, asthmatic, refluxing kids.  It’s a different ball game when you are dealing with a kid on steroids and other drugs who wakes hourly, five to six times a night  (Annika’s record was every twenty minutes) in pain from acid reflux, coughing, snotty or wheezing or with (possibly drug side effect induced) nightmares.  It’s your job to calm your hysterical, kicking and screaming child down, make them comfortable, soothe them back to sleep and do it all with patience and grace.  And you do it once, twice, three times or more, night after night.  But eventually you become so trashed from sheer exhaustion that one night you break down in tears and snarl at your spouse as you argue whose turn it is to deal.  Worse, you do it in front of your child, adding to the trauma.  That’s night time parenting at its finest.  In the light of day (sometimes even just a few minutes later) you regret it and feel like the world’s worst parent and the world’s worst spouse.     

There’s a reason sleep deprivation is considered a form of torture.  It breaks you down.   It makes you crazy.  You can’t function and be a patient parent or a patient spouse or a patient human.  You’re stuck at the bottom of Maslow’s Hierarchy of Needs like a hamster in a wheel. 

When you are sleep deprived to the breaking point you go into this brain stump mode and you say and do things you later regret saying and doing.  And if you lose your cool you feel resentful and guilty for having most likely psychologically damaged your child.  So it’s tantamount to get your child’s symptoms (asthma, reflux, whatever) under control so you all get some sleep at night.  And so you medicate your child. 

And that brings me to the daytime parenting challenge.  When short on patience from sleep deprivation, how do you then gracefully parent and effectively discipline a child on drugs, and steroids in particular?  Annika takes the standard asthmatic child cold season dose of two puffs of Flovent (Fluticasone) twice a day.  I hate this drug.  It has bad side effects.  It causes children to grow more slowly.  It may cause glaucoma or cataracts and increase the risk of osteoporosis in long-term users.  And those risks are on top of a long list of side effects, which include headache, sore throat, cough, (ironically) shortness of breath, hoarseness and psychological effects such as depression and anxiety. I cannot know for sure what Annika feels, but while on Flovent or oral steroids like Prednisolone (one brand name is PEDIAPRED®) my sweet girl turns into the Tasmanian Devil on meth.  She becomes contrary about every little thing.  She challenges me at every step, saying “No!” no matter what she’s asked, and she pushes boundaries with gusto.  She goes manic, tantrums, cries a lot and frequently goes into what we’ve dubbed “death and destruction” mode.  She turns into a textbook ADHD child.  She rampages through the house, grabbing and throwing random objects on the floor, banging things together, screaming and shouting loudly, ignoring every request to stop.  She’s constantly hungry and wants to eat all day, all the time and tantrums when not given what she wants.  She always gains weight after being on steroids for a week or more.  After three days on Flovent she gets to the point where she works herself up into a frenzy and can be so out of it that she is not capable of making eye contact, never mind focusing or listening.  She just whines and cries and trashes.  In the midst of this she sometimes has moments of self awareness and covering her ears with her hands says “I can’t take this, I can’t take this” over and over again.  It’s hard to watch. 

So how to discipline a child like that without feeling (and often acting) like a bully?  After all, it’s not really “her”, it’s the effect of the drug.  But you have to do something since you are witnessing damage to property, sanity and risking injury.  Annika in that mode has hurt herself, falling, tripping and running into walls and furniture.  She currently sports a big bruise on her right cheek from hitting herself on a chair at the allergist’s office after tripping over while running all over the room.  I often end up physically restraining her or yelling and then feeling bad about it.  And then how to determine where the drug induced behavior ends and the “normal” three and half year old antics start?  When I asked Dr. B. about this, she confirmed that most children experience behavioral side effects from steroids.   And said that’s why they (the doctors) try to give them (the kids) “a break from the steroids over the Summer”.  So effectively I’m expected to accept that my child will be like that for a minimum of nine months out of the year?  That’s not acceptable.

So that’s why I’m on a mission to eliminate steroids out of her body and out of her (and our) life.  And that means understanding all the alternatives and doggedly pursuing all the research out there on non-steroidal management of asthma.  So if I seem obsessed about this topic, I am.  I am pursuing better health for my child, better sleep for my family, and better parenting for me.

Today was a day full of surprises, good and bad.  I took both kids to see Dr. B., a Pediatric Allergist with an impressive resume.  We got the referral from Dr. P., our “miracle maker” Pediatric Gastroenterologist.  Dr. P. got Annika’s GERD under control, something our prior Pediatric GI failed to do for nearly three years, and we love her (OK, not really, but almost) and very much respect her and trust her recommendations.  Dr. P. suggested we go see Dr. B. to atopy patch test (APT) Annika for her suspect foods in order to zero in those causing her GERD and contributing to her asthma, since we were still just guessing at that point.  She told me that in recent years several research studies were published demonstrating that APT testing was useful in identifying and predicting the potential severity of immune response to food allergens in pediatric patients like Annika who had gastrointestinal symptoms.  Based on Annika’s prior SPT and RAST results (mostly negative) and her symptoms, we were assuming that her allergies were cell-mediated rather than IgE-mediated.

Bottom line, I decided to bite the bullet and get it done, even though I knew it would be a major PITA.  First, it was difficult to get an appointment at all.  When I called in October I was told the earliest (and last in 2008) opening was in mid-December.  I took it.  Making the appointment required a lot of pre-planning.   I had to get flight reservations to the East Coast ten days before Christmas.  I had to pull Annika out of school one week early.  Since Marc could not take early vacation from work, I had to fly solo across the country (two four hour flights) with two small children (something I always swore I would never do and now swear will never do again).   And then I had to pack the car and take a three hour road trip with two kids that hate long car rides, dragging my poor mom along with us. 

But we made it.  And so when within the first thirty seconds of chatting with Dr. B. I found out that she did not do APT testing, that two of her colleagues in the department did that, I was not happy.  Dr. B apologized for the misunderstanding and told us that if we really wanted to do APT, we would have to start from scratch (no pun intended), with one of the other doctors, come in on a Tuesday for a “first” appointment, then again on Friday for the testing, and the following Monday to get the tests read.  And of course, both doctors were gone for the remainder of the year, so we were out of luck.  So that was surprise number one for the day.

Surprise number two was also not a good one.  As it turned out, since the lab that did Annika’s RAST test did not do the Gold Standard ImmunoCAP RAST test, “the only specific IgE assay to receive FDA approval to quantitatively report to its detection limit of 0.1kU/l”, the results were useless and poor Annika getting poked with a big needle and having three tubes full of blood drawn was all for nothing.  I was very upset about that (and made a mental note to berate our Pediatrician’s office for using a laboratory that does non-standard testing), because I had promised Annika she would not have to be poked again after that time, and certainly not at the visit today.  Well, it turned out that I had lied.  Not only did Dr. B. suggested we skin prick test (SPT) both kids for the top eight, she suggested we also ImmunoCap RAST test them for any possible false negatives or borderline positives, to make sure we don’t miss anything.  Oy!

This is what skin prick testing (SPT) looks like once the “pricking” is done.  It hurts when it’s done and itches after.

After brevely enduring much poking (she flinched every time, poor kid) of her back while watching 101 Dalmatians on video, Annika started complaining about feeling itchy.  Her back became covered in red blotches and raised welts and more surprises for us.  She tested allergic to peanuts, but only moderately so (surprising since it was her major reaction last time we did this).  Her most extreme reactions were to tree nuts (not too surprising), but also shellfish and tuna, a big surprise, since neither of those allergens were even on the radar for us before.  She also tested allergic to soy and apparently did not test allergic to dairy (something I forgot to ask about).  We were advised to eliminate all nuts from the house and to very strictly avoid any foods that may be cross-contaminated with tree nuts and peanuts, so nothing with “shared equipment” or “made in a facility that…” processes tree nuts or peanuts warning labels.  We also now have a specific food allergy action plan to help us decide what symptoms should lead us to using the EpiPen (we carry the “Junior” version) in case of a bad reaction.

Dr. B. favors an aggressive approach to the treatment of asthma, so she strongly recommends the use of steroids like Flovent and nasal sprays like Veramyst (fluticasone furoate) or Nasonex (mometasone furoate monohydrate) over NasalCrom (cromolyn sodium, a mast cell stabilizer that has been used for the management of asthma in patients sensitive to steroids).  She told us that recent research has shown that cromolyn sodium was no more effective than placebo.  I am not sure how I feel about that. 

Annika’s Naturopathic Doctor suggested we try NasalCrom in addition to Singulair, and I see no risk in continuing to use it if it can reduce our dependence on the steroids.  I hate to see Annika on Flovent.  She reacts so badly to it, she’s so out of control she actually talks about not being able to “stand this”, as she said midst fit today (she’s been on Flovent for three days straight).   The asthma and environmental allergy management protocol Dr. B. shared with us unfortunately would have us get rid of our kitties.  I am devastated, but will do what I have to do.  A friend offered to take them, so it may make it easier, but I’m very sad about it.  I still have some hope, since after drilling Dr. B. on this matter (I brought up all my PubMed research on the issue), she did not have a clear answer for me, except to say that there’s research supporting the argument for and against having cats at home.  But realistically, we have to at least test this, so at least the kitties need to take an extended vacation somewhere.  I wish there was a better way.

Max tested all negative for the top eight allergens, but his immune system is still developing, so given that he definitely is reacting to egg, soy and cow’s milk proteins in my diet, Dr. B. said that they are most likely false negatives.  She did confirm that the scaly patches on his body and head are indeed eczema and instructed me on how to care for it.  I know that strict avoidance of the suspect allergens clears it up, so will just have to be good for his sake.  No cheating allowed.  Sigh.  And Dr. B. felt that he was likely allergic to eggs, so prescribed an EpiPen for  him too.  Oy!

In the end it seems most of Annika’s reactions are IgE mediated, so the APT may not make sense for her after all.  Tomorrow we’re doing the blood draw to test for the other allergens.  I’m nervous, but was assured there is staff dedicated to doing Pediatric blood draws.  I hate seeing my kids poked and prodded like that, but hopefully better data will lead to better prevention and better treatment for both.  Dr. B. took a lot of time with us and communicated with Dr. P. to make sure they (and we) were on the same page.  She also made concrete recommendations on how to go about finding a good allergist closer to home and took the time to mention some of the top allergy researchers’ names for me to look up.  I did learn in the process that there are several “schools of thought” as far as food allergies go, so plan to investigate further to optimize the kids’ treatment plan. 

So in the end I feel like the visit turned out to be very useful despite the original mix-up, and that was the final (and good) surprise for the day.

A few days ago in a moment of bad judgment  I fed Annika some sorbet sweetened with corn syrup.  I use mango sorbet to hide her Cal-Mag Citrate plus vitamin C supplement, which comes in powder form and is very sour because of the 250 mg of vitamin C in each dose.  Annika’s Pediatrician recommended we give her 1000 mg of vitamin C  every day because vitamin C lessens the severity of an allergic reaction by reducing histamine release from mast cells and it breaks down existing histamine faster.  The supplement fizzes when added to water or apple sauce and Annika doesn’t do fizzy, period.  So I have found that the mango sorbet works best.  It is sweet enough to overpower the sourness.  And while I’m at it, I also add to it her Probiotic and  the Singulair she takes for her asthma.  Those also come in powder form with a suggestion that it be given in apple sauce, but mango sorbet is way more fun.  Plus, it’s Annika’s favorite treat since the first time she tasted it on our Hawaii Thanksgiving vacation two years ago.  And when you have a kid who takes as many drugs and supplements as she does, it feels good to do it in a way that turns it into a treat. 

It was past time for Annika’s evening dose of vitamin C, and I realized that I was nearly out of our favorite Ciao Bella mango sorbet that uses cane sugar (the ingredients are mango, water, sugar and lemon juice, got to love it). 

I should have skipped the dose, but instead I grabbed the mango sorbet I bought by accident which was sweetened with corn syrup, thinking that a couple of teaspoonfuls wouldn’t be a big deal.  Annika did test allergic to corn, so I really should have known better.  And as it turned out, it was a big deal.  A few hours later Annika threw a temper tantrum of epic proportions.  She was so worked up, she expelled all air out of her lungs with a cry so powerful that she nearly passed out.  Now, she’d done this before, but both those times it was as a result of a bad bonk (stitches followed one of those times).  So I was checking her over for signs of a dislocated shoulder or elbow or a gaping wound, or something to explain why she was crying so hard.  As it turned out, she reacted in this extreme way to my request that she stop washing the glass shower partition with my mother’s pricey facial cleanser.  Oy!  She was tired because it was past her bedtime and already more hyper than usual due to the corticosteroid still in her system (she was on Flovent during a recent cold) and by adding the corn I had created conditions for a perfect storm. 

I currently don’t have data on hand (I do plan to find some), but I have come across a lot of anecdotal evidence from parents that corn syrup seems to make kids hyper, more so than cane sugar or other forms of sugar.   And that’s just “normal” kids.  Many parents of children with food allergies know for sure that their children have behavioral reactions to allergens.  And with corn the allergy and sugar aspects seem to reinforce each other in terms of behavior.  I’ve previously linked hyperactivity and behavior issues in Annika with the consumption of corn, and lately it has been getting worse.  A smaller amount now seems to cause her to react.  I also recently picked up at our local library Dr. Doris Rapp’s Is This Your Child? Discovering and Treating Unrecognized Allergies.  While Dr. Rapp’s treatment techniques are considered controversial by some (I don’t know enough to have an opinion at this time), her exhaustive 627 page book overviews possible allergens, allergy symptoms with photos and includes example cases and comprehensive references.   Dr. Rapp believes that allergies and chemicals in our environment can cause behavioral problems and is convinced that most children medicated with Ritalin (methylphenidate) and other stimulants for ADD/ADHD are actually suffering from allergies.  From her website:

Dr. Rapp believes it is imperative that both the public and physicians recognize that multiple body areas and a wide range of symptoms can be produced in allergic patients who have unrecognized and atypical forms of allergies. Symptoms can be much more than hay fever, asthma, coughing and itchy skin. The appropriate allergy treatment for dust, pollen, molds, foods and certain chemicals (chlorine, fluoride, etc.) appears to be surprisingly helpful in relieving many acute and chronic physical, emotional and learning problems in both children and adults.

She also talks about allergy-related temper tantrums, describing the glazed-eye look and an inability to register what the parent says.  I’ve seen Annika in a “regular” tantrum and one that would fit this description, and they are different beasts.  During a regular tantrum I can still get across.  In an allergy tantrum, it’s like I’m dealing with a possessed child.  She’s just not herself at all.

So now I know we have to try harder to avoid corn and it derivatives, and corn is an allergen that is even more ubiquitous than dairy and soy.  One corn allergic individual created a website on which he lists many of the corn derivatives in what-passes-for-food out there.  Some of the products we consume that contain corn include breads, cookies, sauces, spices, vitamins, aspirin (as binding agent), toothpaste, baby powder, cereals, peanut butter, snack foods, glue on stamps and envelops, ethylene used to ripen fruits and vegetables, hairspray, deodorants, make up, play dough, wax on the fruit at the grocery store,  food additives such as xanthan gum, citric acid, maltodextrin, dextrose, ascorbic acid, crystalline fructose, lecithin, grain alcohols and vinegars, and the list goes on and on and on.

Why is corn in everything?  Well, it is cheap, mainly because the corn industry is a domestic powerhouse (revenues approached $19 billion last year), protected by subsidies.  That’s also why high fructose corn syrup (HFCS) is cheaper than cane sugar which is subject to import tariffs.  But with the growing demand for ethanol (which is neither better for the environment, nor more economical, and in fact, quite the opposite, but I digress…) corn has become an even hotter commodity.   There’s money in corn, and the corn lobby is pretty powerful.  It is comprised of associations of corn growers and refiners and food additive producers such as  Archer Daniels Midland Company (ADM ), one of the “wholesome” companies involved in the lysine price-fixing conspiracy in the 1990s.  The corn lobby is so powerful that even the Food Allergy & Anaphylaxis Network (FAAN), instrumental in getting the allergen labeling on foods, officially denies that corn is an allergen.  One concerned corn allergic blogger who dug deeper into the matter suggests in his post that it’s because Kraft Foods Inc., a major donor to FAAN, uses corn in their products.  Almost everything is sweetened with HFCS, which is a major ingredient in carbonated soft drinks, juices, sorbets, cookies, breads… you name it.  It has been linked to our nation’s rising problem with obesity, type II diabetes (my soda loving husband is a sufferer) and other health problems. Studies show that unlike table sugar, HFCS goes straight to the liver, releasing enzymes that tell the body to store fat.  This in turn may elevate blood triglyceride levels and overall cholesterol levels, slow fat burning and accelerate weight gain.  Other research indicates that HFCS fails to stimulate insulin production, essentially turning off the body’s “I’m full” signal, leading to overating and contributing to obesity and type 2 diabetes.  Not surprisingly, the gradual replacement of sugar with HFCS in the American diet in the 1970s correlates with the rise of obesity.

The recent dishonest and downright insulting $20-$30 million “Sweet Surprise” marketing and advertising campaign by the Corn Refiners Association is an attempt to push back against the negative rap of high fructose corn syrup (HFCS) and suggests there is no difference between HFCS and sucrose (plain sugar) and in fact that HFCS is “natural” and “nutritious”.

Say what!?  One problem is that even referring to HFCS as “corn syrup” is a misnomer.  It has nothing to do with the corn syrup you can buy at the grocery store.  Instead, HFCS is an artificial additive whose production is a multi-step chemical process (thus corn refiners)   that turns corn starch into a liquid, how is that “natural”?  Interestingly,  under pressure from ADM the FDA has reversed its earlier stance and issued a letter stating that HFCS is natural.   And it’s no wonder the HFCS refiners  are trying to misinform the public.  Just follow the money and you’ll know why.  The average person in the United States consumes 63 pounds of HFCS in a year. 

The revenues for HFCS alone amount to nearly $6 billion.  If more people think it is bad for them and avoid it, then it is bad for the industry’s pocketbook. 

And don’t even get me started on how bad corn growing is for the environment…  I’ll save that for another post-tantrum rant. 

For now, it’s time to read labels even closer and again, vote with my wallet.