Photo by Rebecca Gould Photography

Thursday, April 2, 2015

The Chocolate Garden

More than a year ago, when we first reviewed the consents for the PRROTECT study in the Clinical Research Unit (CRU) -- knowing at that time that Susan was, in fact, eligible to be enrolled in the clinical trial (which was a very different feeling than it had been when we reviewed that same document in the comfort of our own home) -- one of the things that gave me pause was the condition that Susan not try any new foods during the course of the clinical trial.  

No new foods.
Honestly, while I feel like there is a foodie hiding inside of Susan (of our three children, she is the only one who is open to the idea of new things)...we don't do a lot of new foods...for in the life of a food allergy family, a single new food means research -- and a lot of it.  For children like Susan, trying something new is NEVER as simple as convincing her to take a bite.  

Any time we find a new food or product she wants to try, I have to first research it to be sure it is free of risk of cross-contamination with peanut.  Unfortunately, in the United States, our food allergy labeling laws are...loose.  We do not require our manufacturers to label if there is risk of cross-contamination with an allergen, although some manufacturers voluntarily label -- but even in those cases, I have to tease apart what their labeling means.  

Any time Susan wants to try something new, I usually start with some on-line research to see what others in the food allergy community have to say about the product -- what has their research told them?  What is the prevailing line of thought about the company?  I also visit the company's website to see if they have allergen information (I am ALWAYS thankful that Susan is allergic to "common" things -- peanuts, tree nuts and soy -- not harder-to-delineate things like...saffron or garlic or sesame or sunflower...I can only imagine how hard the process would be with lesser-recognized allergens).  And then, armed with research and general impressions, I call the company and grill whatever customer service representative happens to answer the phone about risk of cross-contamination with peanut (several years ago our allergist told us that we no longer had to worry about cross-contamination of tree nuts).  I try to determine whether or not the person I am talking to understands my concerns...and whether or not he or she really has the information necessary to answer my questions.  The process is hard, and always uncertain -- crazy-making, really...for how can I ever really know for certain that a product is safe?  

The truth is -- I can't.  Years ago, I called about a certain product and was absolutely assured that there was no risk of cross-contamination with peanut.  That night, I gave the product to Susan and she had a full-blown anaphylactic reaction -- EpiPen, Benadryl, ER.  The next day, a dear friend took it upon herself to try to get to the bottom of the exposure and discovered that a product made by the same company containing peanuts had the same plant code as the product I had fed Susan.


(And no, I won't provide the company's name.  We no longer use anything they make, but I am always thankful for the lesson I learned about manufacturing plant codes and the fallibility of the person on the other end of the phone.) much as the "no new foods" phrase gave me pause, when I thought about it, I felt we could live with it.  I could live with it.

And, in fact, I have embraced the "no new foods" policy repeatedly over the past year.  In some ways, it makes things easier -- if Susan hasn't eaten it before, now is not the time.

Then, during a clinical trial visit in late November, we commented that we had been having trouble finding the Blue Diamond Almond Butter Susan loves.  [Susan was cleared to eat almonds a number of years ago -- starting with almonds grown and produced by almond-only Briden Wilson Farm and eventually moving on to Blue Diamond almonds. (Blue Diamond almonds are made in a peanut-free facility, although they are potentially cross-contaminated with some tree nuts -- I no longer remember which ones, but I know that the tree nuts involved are not a concern for Susan)].  The conversation that ensued prompted me to poke around on line, at which point I determined that I did not think Blue Diamond was making almond butter any longer.  Huh.

Loss of almond butter was a disappointment -- and, since we are non-soy eating vegetarians whose only nut consumed is almonds, this was more than just a disappointing inconvenience -- it was a problem, especially since we WANT Susan to continue eating almonds on a daily basis.  

As we sat around during Susan's observation period, the doctor and clinical trial coordinator opined that "no new foods" did not mean Susan could not have a different brand of almond butter (she now eats Almond Barney Butter).  

Clearly, they had a different interpretation of "no new foods" than I did -- and while we embraced their interpretation for the introduction of Almond Barney Butter (which I felt was very likely to be safe), after we introduced the Barney Butter, I went back to the mantra, "if Susan hasn't eaten it, she can't eat it."  

Then, one day in December I was driving from Michigan to Illinois (toward home) with my son, who had had a disappointing weekend of speedskating.  I saw a sign for the Chocolate Garden (he's 10 and we joke that he'd like to consider chocolate a food group) and since it was just the two of us, I offered up a stop.

We have family in Ann Arbor, and I have seen the signs for The Chocolate Garden for years, but have never considered stopping because Susan has always been with us.  I never dreamed The Chocolate Garden could be safe for Susan.  That said, we occasionally let our other children eat things that are not safe for Susan (and, in fact, introduced them to peanut butter one summer while she was at camp in Canada), and since Susan wasn't with us, I decided to stop.

My son had a great time sampling chocolates and, while he was enjoying his samples, I struck up a conversation with the employee about food allergies.  I was absolutely shocked when the employee at The Chocolate Garden informed me that all of their chocolates are free of peanuts, tree nuts and coconut.  She explained that their Cinnamon Love truffle uses a cinnamon candy that they do not manufacture there, and that since they cannot guarantee that that particular candy is free of cross-contamination, they recommend that guests with peanut or tree nut allergies avoid that particular truffle.

I asked all of the usual follow-up questions and found myself so very tempted to buy some truffles for Susan -- for whom chocolate would most decidedly not be a new food.  I talked myself out of a purchase and then before we left decided to buy a "2 Fer" (a bag with two pieces of chocolate in it)...which my son gave to Susan when we arrived home.  

Susan was beyond surprised to receive a food gift -- especially gourmet chocolate...and she loved it!

Fast forward to our drive from a suburb north of Chicago to a suburb outside of Ann Arbor, Michigan for Easter this year.  I was driving so that my husband could work, and as the miles rolled by, I could not help but reflect on the events of the past year.  I remembered the blog I wrote on the way home from our Easter visit last year -- filled with hope (near certainty) that Susan would be in a far, far different place this year.  I reflected on the events of the past year -- Susan's steady certainty in the face of her intensely difficulty journey...and decided a treat was in order.

After all, chocolate is NOT a new food for Susan...and at this point, The Chocolate Garden truffles aren't new, either!

Because it is always important to ask about food allergens every single time (you never know when products change), after I casually threw out the idea of a stop at The Chocolate Garden, I cautioned Susan that we would have to check to be sure it was safe -- she totally understood...and I know when she hopped out of the car by the sign, she was hoping beyond hope that nothing had changed.

We checked with the owner, Tina Buck, who has been making chocolate truffles at The Chocolate Garden for 17 years.  I was beyond impressed with her understanding of food allergies and the way she explained why she would not recommend Susan sample the Cinnamon Love truffle.  She even explained (before I asked) that the Milk Chocolate Hazelnut is flavored with artificial, non-nut based flavors).  I was even more impressed when she told me that she is committed to remaining peanut, tree nut and coconut free because she recognizes what a treat it is for the 10% or so of her customers who would otherwise not be able to enjoy her products.

I told Susan she could try anything she wanted -- as long as she stayed away from the Cinnamon Love.  I cannot stress enough how incredible it is to be able to tell your food-allergic child she can sample with abandon.



They presented Susan's selections in a specific order -- from "lightest" to most intense -- starting with the Vanilla Rose, then the Salt & Pepper Caramel, and finally the Dark Chocolate Mint.

I was teary-eyed as I watched Susan savor her samples...

And I had to laugh at her pout when her samples were gone...

And I couldn't say "no" when she asked for a "2 Fer."  

Tina explained to me that she has been thinking about making products with peanuts
and/or tree nuts because she knows they would be enjoyed by many of her customers (after all, peanuts and chocolate go SO well together).  She explained that if she did so, all of the products containing peanuts, tree nuts and or coconut would be produced and packaged in a different kitchen -- but she wondered what it would be like for Susan if someone sampled a chocolate containing peanut at the tasting counter before Susan came along.  I explained the risk it would likely create for Susan (and then I felt compelled to try to explain, briefly, that Susan -- who has a history of airborne and contact reactions -- now eats 8 and 1/2 peanut M & M's a day) and was thrilled when Tina voiced understanding and compassion.  It isn't often that I find someone who "gets" food allergies as well as Tina does, and I am fairly confident that Tina is going to keep The Chocolate Garden safe for people like Susan.

When we arrived at our destination, I had to check out their on-line allergy statement, too.  It's pretty incredible.  

(NOTE:  I initially wanted to stop at The Chocolate Garden for Susan, because I wanted to do something fun and interesting and unusual for her -- a treat, of sorts.  I intended to blog about our fun outing, and then as part of my blog entry, I ended up writing extensively about The Chocolate Garden's food allergy practices.  I did so simply because I think it is important to recognize businesses that understand food allergies, thereby improving the lives of those living with food allergies.  If you or your child has food allergies, please read The Chocolate Garden's on-line allergy statement and then reach out to Tina to be sure their truffles are safe for you or your loved one.)

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