Beware of the Barley in a Pretty Purple Pouch

So after we discovered W's wheat allergy I had several people ask me if we were going to go totally gluten-free.  I wasn't sure at the time, but knew that we would likely lean that direction since the options for gluten free living are so much more abundant these days and it seems like wheat cross contamination can be prevalent with other types of grains.

And then...there was a beautiful purple baby food pouch that called to me.  I know that this sounds ridiculous, and it is. It can be frustrating when you stand in the baby food isle and consistently pick up the same three or four pouches, but still look at every single one because "There have to be more that he could eat," or "Maybe they changed the ingredients." When so little is available to your child, excitement takes over when you find something new that contains none of his current food allergens.

Read the label and there it was, barley.  The main grains that cause issues in Celiac and gluten intolerance are wheat, barley, rye and spelt (as discussed in my earlier post Wheat vs. Gluten).  We have the wheat allergy confirmed, so do we try it and see? How much like wheat is it? He can have oats, so why not barley? Questions, questions, questions! Doubt, guilt, fear!

I am quite often psyching myself out of so much when it comes to W, but fear that all my incessant worries will indeed end him up in a bubble, a la that horrid Jake Gyllenhall movie. So I allowed the newness and purpleness to win over (really people, they spend countless dollars on making the packaging appealing enough that I would eat it!)  W really love it, but I am afraid that it just didn't love him, and back up it came within minutes.

Since all of the other ingredients were things that W had successfully eaten in the past, I am pointing the finger at barley until we can confirm with our allergist. In light of all of this and deciding to embrace my sometimes neurotic intuition, we will be going gluten-free and for now we will beware of the barley!

Wheat vs. Gluten

I myself have been very confused since W's wheat allergy diagnosis. Does he have to go gluten free?
Is something that is labeled gluten-free guaranteed to be wheat-free by definition? So I got to reseaching.

What is Gluten?

Gluten is a protein that is found in wheat, but is also found in other grains such as barley, rye, and spelt. There seem to be differing opinions as to whether or not oats belong in the gluten category as well.

The difference between Gluten-free and Wheat-free

W's diet will require food items to be wheat-free as his allergy is to wheat, not to gluten. Good news for us is that he can eat foods labeled gluten-free as any gluten-free food will also be wheat-free (ingredient/label reading will likely still prevail). The reverse, however, is not true in that wheat-free may still contain gluten from additional sources listed above.

The recent influx of gluten-free items into the food market have made the lives of those living with Celiac disease rejoice, and I have just jumped onto their bandwagon! It has certainly seemed easier to find substitutions and alternatives to wheat by looking to gluten-free products.

The Controversial Oat

Before I even began to look at gluten-free products for W, I searched and searched for a wheat-free Oatmeal on the regular store shelves to no avail.  They all either listed wheat as an ingredient or included the dreaded bold, "OATS MAY CONTAIN TRACES OF WHEAT" at the bottom.

As I started to search online for "wheat-free oats" I came across lots of information about oat/wheat cross contamination. "Pure Oats," which seem rather hard to find, are those grown, milled and processed exclusive of any other grain types and are thus able to be certified as gluten-free (and thus, wheat-free!)

I found Glutenfreeda Oatmeal at our local Whole Foods Market.  It is available in six different flavors such as Maple Raisin with Flax, Banana Walnut with Flax, and also in a variety pack.

With its fabulously simple ingredient list (gluten-free oats, brown sugar, freeze-dried strawberries, ground flax, salt) that was devoid of any other allergens, we chose the Strawberries and Brown Sugar with Flax Oatmeal.

Not only did W love it, but I sneaked a bite and was impressed.  I am an old fashioned Quaker Apples and Cinnamon girl myself, so I wondered if it would hold up to the standard. I know that oatmeal is not usually something to write home about, but what I liked was that this oatmeal did not skimp on the fruit and it didn't have any of that artificial flavor/sweetener taste that you get with others. The sweet taste came from the strawberries and brown sugar alone. 

Happy boy with his oatmeal!

brown sugar, freeze-dried strawberries, ground flax, salt - See more at: http://www.glutenfreeda.com/our-products/oatmeal/strawberry/#sthash.yuMFwTCZ.dpuf

Ingredients:

Certified gluten-free oats, brown sugar, freeze-dried strawberries, ground flax, salt
- See more at: http://www.glutenfreeda.com/our-products/oatmeal/strawberry/#sthash.yuMFwTCZ.dpuf

Ingredients:

Certified gluten-free oats, brown sugar, freeze-dried strawberries, ground flax, salt
- See more at: http://www.glutenfreeda.com/our-products/oatmeal/strawberry/#sthash.yuMFwTCZ.dpuf

So this was step one into our wheat-free world, and so far, it seems that this might be one allergen with good options for replacements and substitutions.  My next plan of attack will be to make some gluten-free/wheat-free granola.  I'll keep you posted. 

UPDATE:
I must make a confession, that when I get excited about a food with safe ingredient list, that I jump on it.  While on this new journey, I am constantly having to take a few steps back, stop and re-check.  Twice this week I have found foods in my cabinet that could be unsafe.  The first, a baby food pouch of fruit and grain (oats) that also contained trace amounts of wheat. Fortunately, we didn't feed that to him.  The second, unfortunately was the oatmeal.  It is processed in a facility that also uses tree nuts, dairy, eggs and soy.  Luckily for us, there was no reaction with the bit that he ate. 

Like with anything new, we make mistakes and learn. We try our best to keep W safe, and I hope that any lesson learned will never be learned the hard way.

All for one and one for all

This morning at breakfast I watched my older children lick icing off their fingers, now empty of cinnamon rolls, and commented, "Enjoy them now, because in a few months we won't be able to eat those."

My comment was met with blank stares from the kids and a "What? Why?" from the husband.

"Well, W can't have them, " I retorted.  Apparently, I was in the minority in thinking of family solidarity and the only one that had been secretly panicking as the days of separate meals for him vs. us dwindle.

At first it irritated me to think that any member of our immediate family would balk at the thought of ridding our house and diets of all of W's allergens.  Then the more I thought about it, the more I realized how much my children and husband had already given up and I wondered how realistic was it to have my entire family go egg, peanut, dairy, wheat, and everything-else-free for every meal, all the time.

Egg-Free
Because the egg allergy is an ingest/inhale/contact allergy, our house has become virtually egg free.  We no longer enjoy daddy's weekend breakfast tacos or my Mother's Day staple of eggs benedict in bed.  My daughter's favorite meal on earth, fried rice, now has to be ordered without eggs, for which we get very odd looks and even had one restaurant serve all of our meals except hers because according to their chef, "Fried rice takes longer to cook without the eggs." Really?

One weekend we all wanted my husband's famously wonderful waffles for breakfast (which are only famously wonderful because they include whipped egg whites) so he took everything outside and cooked waffles for us on the back porch. 

Peanut-Free
We are not yet sure of the severity of W's peanut allergy, but at the suggestion of our allergist, have rid the house of all peanut products.

While I thought this one would be much more difficult, given my kid's affinity for a PB&J, we transitioned to almond butter quite easily.  In fact, my older two were offered a peanut butter sandwich while staying alone with their grandparents one weekend and they refused because of W's allergy.

I do miss Reese's Peanut Butter cups, and I let out an audible sign as I pass by Trader Joe's Chocolate Covered Peanut Butter Pretzels (found here on amazon so that I can eat them vicariously through you.) But all in all, those are just things that serve to add to my hips, not my nutrition.

Dairy, Wheat, and Everything-Else-Free
Because none of his other allergies seem to be contact or inhaled as of yet, we have not eliminated them from the household diet. I know that there will come a time when we might have to, and that meals made for the entire family will need to use soy milk, rice flour and such, but for now we just take it in baby steps. I bought gluten/wheat-free oatmeal yesterday instead of our run-of-the-mill Quaker brand (I will review it here shortly), so we will see where this journey takes us as a family day by day.

Either way, I know that it will break my heart to see my sweet boy staring hungrily at his big brother and sister as they enjoy some yummy, dairy/egg/wheat -filled treat, so I am hoping that we can find substitutions and alternatives for all of us by the time we get there.

The Death Cookie

Whether his lack of reactions made us lower our guard or whether it was just a hope that W would finally be able to eat with some sense of normalcy, W was given a toddler biscuit on Christmas Day.  W, shortly after putting it in his mouth started breaking out into hives around his mouth.We gave him Benadryl, which helped to eliminate the hives.  He was still fussy, and within about 15 minutes, the hives returned dramatically and increased in number.  Then came the vomiting.  Again, it was Linda Blair on steroids. 

What many people assume about allergies is that an Epi Pen is only used in cases where someone's throat is closing up and they can't breathe.  This is not the case.  Our allergy action plan, provided to us by our allergist, lists SEVERAL instances where the Epi Pen should be administered.  Of course in circumstances including swelling of the face and/or throat, but also when there is a combination of symptoms, such as...

You guessed it! Vomiting and extreme hives!

We had to administer the Epi Pen to my sweet, 11 month, baby boy.  And when I say "we", I mean that his pediatrician grandpa and grandma did it while I hide crying in the laundry room. I am not quite sure where my hubby was in all this because again I was hiding. From my spot a safe distance way I did hear the click of the Pen and then the shrieks of my sweet boy. While the epinephrine did rob W of all his coloring, make him very sleepy and clingy, he was dramatically better almost instantly.

There wasn't a need to administer a second Pen as is sometimes the case, but we did have to give him a steady does of Benadryl for three days following.  If we came close to missing one of his doses, the hives would start to pop up again.

After it was all over, four different adults in my family looked at the ingredients list, surmising what the culprit could have been. They cut out the ingredient list and gave it to me to take to the allergist. When I finally took a look at the list myself, I saw it...Whey.  Whey is milk and W has a milk allergy.  Some foods will have allergens bolded or included in a separate place at the bottom following the words "Contains allergens...".  This label had neither, but following the word Whey it did say "(from milk)" which can be confusing.

Not 100% sure that his milk allergy would have cause such an extreme reaction, we took the list to the allergist who suggested testing for wheat and sunflower oil.

Both were positive.

Out of the four main ingredients in the toddler biscuit, W was allergic to three of them.  Thus the reason why the toddler biscuit is hereto-after known as the death cookie.