Monday, April 2, 2012

Are We Nuts To Ask About Nuts?

I am back from a Spring Break involving 800 miles of driving and six college visits. So, of course, this post is about the local coffee shop.

It does make sense. After 10 days of 24-hour time with my children, love them though I do, I had earned my occasional-because-it's-too-expensive latte. I had even earned the cookie. I peered through the case, trying to figure out what the little white lumps were. White chocolate? Or nuts?

To be clear, I do not have a nut allergy, or any allergy. I'm just a picky eater. Plus, after years of worrying about cross-contamination and peanut-butter breath, I still hesitate to pick the peanut/nut choice. So I asked: "Do the cookies have nuts in them?"

The startled look on the face of the woman behind the counter said it all. "Well..." she started. "I used to say they were nut free because that's what our supplier told us. We have two kinds, and one of them is supposed to be nut free. But then, the other day, a mom came in and asked if the cookie had nuts. I said no. Her kid started eating it..."

What happened after that point in the story had clearly shaken her up. However, she didn't want to go into details so I couldn't tell if the boy had had a terrible reaction or if the mother had just reamed her out following a minor reaction. I reassured her that I did not have an allergy but she repeated two or three more times that she couldn't guarantee the cookies.

It was a bad cookie anyway. Waste of calories. But here's the thing - should we really have the expectation of nut-free cookies in this type of environment?

I don't know the answer to this. Because my son has multiple allergies, there has never been a bakery option for him (other than a very specialized Kosher bakery several towns away). But if there was a supposedly nut-free, milk-free, soy-free option baked in the same kitchen as other allergen-containing goodies, I can't imagine just handing it to my kid and saying "here you go - hope there's no cross-contamination."

Some parents of allergic kids I've met declare that their child has a "mild" allergy. I think they mean one of two things (and sometimes both):
  • Their child has a high threshold to allergens. In other words, it takes more than cross-contamination to trigger reactions in their children.
  • When their child does have reactions, the reactions tend to be limited to only hives.
Am I more conservative because my son has had reactions from cross-contamination and typically (now) has breathing difficulties during them? Or does the level of a parent's fear really not correspond to a child's reaction history?

Don't get me wrong - I think food service establishments could do a WHOLE LOT better with regard to these issues. (I did try to make a pitch for them to start carrying Divvies, but I could tell from her glazed-over look it wasn't going to happen.) However, label-less baked goods in the glass case are always going to be a risk.

Tort law in this area has not been kind to the allergic. The concept of "strict liability" - meaning that we can sue for injury without having to prove fault - is generally not upheld. Instead, liability requires proof of negligence.

It isn't negligent to have peanuts in a manufacturing environment as long as the manufacturer uses ordinary and reasonable care to prevent cross-contamination. It may not even be negligent to have "trace" amounts of an allergen in the food produced as long as a manufacturer can show an accepted process was followed and it would not be unexpected for the item to be in the food (i.e., nuts in a cookie). While the ADA was expanded in 2008 to provide a broader scope of protection for conditions like food allergies, there's been no test lawsuit brought to trial yet. When one finally is, there's no guarantee of success.  (This is a great article if you're interested in reading more on the topic.)

So, basically, the only absolute protection the allergic consumer has is to not eat the food. If, like my son, you're allergic to a common allergen like milk, you're on your own any time you eat out.

We all have to play the odds. I think it's reasonable to let my son have that cup of coffee or the cut fruit at the buffet. But clearly -- for us -- the bakery shop cookie is still on the NO side of the line.

I would love to hear from parents who consider their children's allergy mild and/or who DO eat the bakery shop cookie! If that's you, please leave me a comment!

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  1. My son is allergic to cashew nuts and hazelnuts. We avoid all tree nuts though we still give him products that say "May contain traces of tree nuts". We eat at cafes/bakeries/ice cream shops etc and just avoid things that definitely have nuts in them. His allergy was diagnosed at 2 and we were told not to worry about "traces of" statements but to be careful with certain products like cheap chocolate that are more likely to contain traces of. He has never reacted aside from that time before we sought testing. His allergist is very highly regarded here (in Australia) and I feel confident in his advice. That's not to say I'm not silently nervous and watching for reactions every time he tries something new!!

    He also has a shellfish allergy and we've recently stopped getting fish and chips from take away shops. He started saying his mouth felt funny while eating it and was getting a red rash around his mouth. I think it may have been cross contamination with shellfish and it's not a risk I'm willing to take.

    I also have a third son who has been diagnosed with a peanut allergy. He's only 9 months old though so we haven't had to face these issues with him. I'm a little more concerned about his allergy though as peanuts seem to be in a lot more products than tree nuts.

  2. Daniel, thank you for answering. If you don't feel like a follow-up, that's o.k., but I wonder what you make of the parents (probably myself included) who avoid may contains, or who go further and avoid even places where there are peanut shells. Does it seem crazy to you or do you just figure your kid has a different kind of allergy?

    There's one story that makes me crazy when I think about this stuff:

    For better or worse, this one has changed my comfort zone. That's clearly Brian Hom's intention, since he now speaks at many allergy events.

    How do you process stories like this?

  3. Oh that's so scary!! And my worst fear! I hadn't heard this story before. It's one of those stories that I know I should read but wish I didn't have to.

    I also read this:

    Gives a little more of the background regarding BJ Hom's allergies which makes me feel a little better about our situation. He hadn't been tested for an allergy despite having symptoms previously and they weren't carrying an Epipen or well educated about allergies at the time. We are educated and do carry an Epipen at all times (2 of them in fact!). I do enquire regarding the ingredients of foods, read labels and make choices based on my knowledge of their product line and previous experiences.

    I don't make any judgements about parents who make different choices - we're all individuals and everyone's situation is different and unique. If anything hearing about others who are more careful makes me question whether I'm doing enough!

  4. As you can tell, I'm like a split personality on all this. I really, REALLY hate the "death porn." I think our community posts way too many links (you the one I posted above) to scare people into stricter comfort zones.

    At the same time, it works. I do have a stricter comfort zone because of it. I'm trying to learn how to peel BACK the stress layers at this point. I wasn't trying to be critical of your choices - I was trying to see how you came to a less restrictive approach in the face of horrifying stories.

    If we never read anything on the internet, I wonder how we'd all handle our children's allergies.

  5. I also have peanut, tree nut, shellfish and fish allergies. I tested fairly high for all of them, but only ever had reactions to seafood. But I avoid all of them like the plague. I won't go into places that cook with peanut oil, but I will go into places with peanut shells, but I'm wondering if I should reconsider.

  6. Angela, I'm not sure if you're wondering whether you really have allergies to the other foods, or just wondering if you should avoid because you've never had a reaction.

    This post may help explain about testing:

    Once you're over the PPV for the allergen, you have a 19 in 20 chance of really having an allergy. However, there are some people who really *don't* have an allergy, despite high test scores.

    I suggest you go talk this over with your allergist and ask about challenge testing for the allergens to which you've never had a reaction. Your allergist may not want to do it if your SPT is also positive, but it would be good for you to be certain about which allergies you're dealing with if you haven't already done all this.

    With regard to avoiding places with peanut shells/oil...I think that comes down to comfort zone and threshold. I do know people who go to "those restaurants" without an issue. I really don't like the idea of my son walking around on peanut shells, because it's so easy to touch one and then touch a membrane, which can cause a problem. However, I'm also aware that, as he becomes an adult, he's going to establish his own comfort zone with this stuff. Again, though, an excellent question for your allergist!

    (The little boy in the story above definitely ATE the cookie...he wasn't just in the same room with it.)

  7. I'm one of the mum's who avoids even the "may contains" with my son. I was advised to do this by the allergist and it only took the few times he has swelled in seconds and become covered head to foot in hives with wheezing to convince me.

    I can tell by the looks on people's faces that people clearly think I am being ridiculous about things but I am just not prepared to take the risk. People who don't deal with allergies on the large (in my experience) really have no idea of what can happen unless they've seen it and sadly don't really seem to care that much either. I probably come across as an over the top over protective mother but oh well so be it. love your blog, so glad I've found it!

  8. I love your blog! I just recently found you but I think you’ve become my favourite allergy blogger.
    We’ve been pretty lax. My 4 ½ yr old has multiple food allergies (peanuts, tree nuts, lentils, chickpeas, several other legumes) and has recently passed a raw egg challenge. She’s never actually eaten a peanut or tree nut. We found out as a result of allergy testing for lentils and eggs at age 2. We were living overseas at the time and were told her nut results were weak +ves and were prescribed an epi as a “precaution.” We weren’t given any further information or testing. I guess I heard “weak +ve” and “precaution” so I made no distinction between “nut free” and “may contain.” She’s eaten bakery treats, ice cream cones, food from bulk bins etc and I’d never asked too many questions at restaurants. Looking back, I realize I may have been a bit reckless. However, we’ve had absolutely no problems. In fact, my husband and I had become convinced she’d outgrown her nut allergies or never actually had them in the first place.
    Fast forward 2 years: we moved back to Canada and saw a specialist here. We were shocked as the wheals appeared on her arms. When we disclosed we weren’t particularly careful of the “may contains,” the nurse looked at us like we were completely negligent and told us we had just been lucky as 10% of foods contain traces. Her RAST: peanuts 9.45, highest tree nut 5.92, lentil 100 etc . . . they’d never seen lentil that high.
    I freaked out in the weeks following our appointment, ridding our house of anything that didn’t comply and vowing to strictly adhere to their advice. My husband however has talked me down. I feel very torn. There’s just so little known about allergies, strict avoidance just seems to be the best guess at the moment. Maybe the traces of peanuts and tree nuts over the past 4+ years have kept her body somewhat used to nuts. I worry if I stop exposing her to traces that is what will tip her over the edge. And, we’re still not entirely convinced she’s actually allergic to nuts. Isn’t there a chance she’s so allergic to lentils she’s cross-reacting? Neither her peanut nor tree nut results meet PPV. I’m interested in looking into this component testing or having her challenged once she’s a bit older.
    We’re trying to reign in our lax attitude a bit and my husband and I have had to agree on some rules since he’s a lot more lax than I am. I think there are people who have to be extremely diligent with food but I’m not sure whether we belong in that group. I’m trying to focus on “healing” her immune system – buying more organic and working towards a processed food free house among other things rather than stress about traces. I think we’re all walking the line between keeping our kids safe and not overdoing it and sometimes I read allergy blogs and forums and just shake my head at all the fear mongering.

  9. Trish, I think all your thoughts are good just need to find an allergist who's willing to work with you! Yes, the legume cross-allergies can make diagnosing the true ones very difficult. We often wonder as well which allergy is the primary one in our son's case. His worst reaction was to soy and he's had pretty spectacular ones to lentils as well, so where does the peanut fall on the spectrum? (Unfortunately for us, we *know* he's peanut allergic because he's failed two challenge tests.)

    It's really important, though, to differentiate the two questions:

    1) Is your child allergic?

    2) If yes, what threshold will tip him into a reaction?

    We know from our last challenge that our son will start reacting at the 1/2 peanut level and have a full out reaction at 3 peanuts. BUT...we've also learned that things can change that threshold - environmental allergies, illness, menses and aging (responses seem to get more dramatic as their immune systems mature in the teens). So...something you've done for years and years can suddenly be a big problem if your daughter has other stressers going on. A phrase my doctor uses a lot is "boys grow out, girls grow in", meaning that hormonal changes at puberty can really change a girl's response.

    I, too, wonder just how diligent we need to be...but we are still very diligent about the peanut. We're just too afraid and respectful to let our precautions on that one slide.

    I think the component testing and challenge could really help you guys. You're right that a 9 RAST isn't very high, and without a reaction history, you very well may be dealing with a false positive. My son's RAST was very low so we were so disappointed when he failed his challenge (and failed another one this spring for a clinical trial).

    I'm writing a book here...but I have so much empathy for your situation! There's just no good answers on this stuff. Everyone has to walk their own path and find that balance between safety and crazy.


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