Minor reactions

We've had several minor reactions over the last few weeks, and it's getting frustrating.  I just think I've isolated the source, when William has another one.  Thankfully, we're only dealing with digestive issues and eczema, but when we're being *so* careful to avoid sulphites, even a minor reaction is frustrating.  It's even more so when I know that even these small exposures could cause an anaphylactic reaction.

So far, it seems that these reactions are a result of one of three things.  The first is food products produced before the current labelling laws went into effect, which means that while new(er) product is labelled, older product isn't.  We can't even be sure that foods are safe if we've read the label, and that's incredibly frustrating.  It means that grocery shopping is a potential mine field, which is one of the reasons that we're moving towards an organic diet.

The second is food products that don't need to be labelled, which includes things that contain less than 10 ppm of sulphites.  Ironically, grapes that supposedly contained less than 10 ppm of sulphites were the source of William's original anaphylactic reaction.

The third is cross-contamination.  We've had a few instances of this and, with our switch to organic produce (thanks in part to Etomami Organics), there have been less and less of these reactions.  But we can only control so much of William's environment and food intake, so are having to slowly eliminate more and more items as we discover potential points of cross-contamination.

In this process, I've learned two things:  (1) there is no such thing as "sulphite-free" eating due to the fact that sulphites occur naturally in a variety of things* and (2) dealing with a complicated food sensitivity is extraordinarily frustrating!  I've dealt with serious food allergies before, but sulphites are a category all of their own in terms of the near-impossibility of avoiding them.  At the moment--knock on wood--we've had several days without a reaction, but I'll stock up on Benadryl, again, this afternoon, as the question isn't "if" there'll be another reaction, but "when."

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*Look for a post on naturally-occurring sulphites, coming in December.

Educating the masses

Well, not really, but if the conversation at my work lunch table yesterday is any indication, it would seem that most people have no clue about severe allergies.  A discussion about food led to one about intolerances, which led to a discussion of the difference between an intolerance and an allergy, which led to a brief biology lesson (Mast cells, histamine, and allergic reactions), which led to "how do you do it?"

It seems that most of the people I have contact with understand that there is a significant difference between an allergy that causes uncomfortable and unpleasant symptoms and an allergy that leads to anaphylasis, but most have no idea what that difference is.  And there seems to be a lot of misinformation out there about what can and cannot cause an anaphylactic reaction.

I had to do an in-depth explanation, at Thanksgiving, as to why the after-eating-sulphites protocol for those of us who *can* eat sulphites exists.  We still eat them, within limits.  Food containing sulphites is only served with metal utensils on/in glass or ceramic dishes (less chance of the sulphites adhering to anything they shouldn't that way).  The person who's eaten the sulphites has the responsibility to ensure that their food (and utensils and hands and anything that may have touched the food) doesn't touch anything else.  Once they're done eating, their dishes go directly to the dishwasher (which I will immediately run) and they have to go wash their hands and brush their teeth (using the same do-not-touch protocol).  It seems a bit extreme, but it's the best I can come up with to still allow sulphites to be consumed in the house and protect William at the same time.  The point I made, when having to defend this process, was that an ounce of prevention (in this case, being very careful about cross-contamination) is worth a pound of cure (use of the Epipen and a trip to RUH's Emergency).

We have another family supper this evening, with a large number of fairly close family who aren't familiar with William's reaction to sulphites, so I think it's going to be a steep learning curve.  I'll be making buns this afternoon to take (so I know he can eat those) and will also make sure to bring some of "his" carrots, too ... I don't want him to feel left out (by not eating the same things as others), but I want to make sure that he's not going to eat anything, either, that'll make him sick.  Wish me luck!

There's nothing as scary as grocery shopping

Well, not really, but grocery shopping has certainly changed for us. I used to waltz into the grocery store several times a week, decide on a whim what I wanted to make, quickly grab the ingredients, and be out the door.

Now grocery shopping at one of the major grocery chains is a bit like planning an expedition to a foreign country. Every item is scrutinized. Is it safe? If there's any doubt, it gets left behind. The risk is just too great.

I stand in each aisle for several minutes, reading fine print, comparing products, and often not buying anything. People must think me a bit batty. Labels are my friend, and my arch-nemesis. Does the product comply with the new labelling laws? Was it produced before these went into effect?

Even in the produce aisles, selecting things takes time. After a recent reaction where William had hives and eczema from one of his apples that'd *just* touched one of his dad's, I'm not willing to risk cross-contamination. So unless it's organic and bagged, I'm not buying produce from the major grocery chains.

Thank goodness, however, for the few local health/organic grocers in Saskatoon. I'm a bit more confident buying produce from them (although we just won't talk about the price of organic produce ... it's worth William's safety, and it's not like we can't afford it). Even so, I'm still an unapologetic label reader, but am learning that so long as it's certified organic in Canada, it can't contain sulphites (unless it's wine). Too, we're beginning to find organic brands and items that we like, so the kids know which granola bars, for example, they can pick from.

Many things, however, I've stopped buying completely. The days of buying baked goods in the grocery store are a thing of the past because William's had a reaction to sulphites in molasses. I've managed to find a brand of unsulphited molasses that works for us and doesn't have an huge difference in taste--it's Wholesome Sweeteners Organic Molasses. There's been a lot of experimenting with multigrain bread recipes over the last couple of weeks, and I think I've finally found one that's easy, that doesn't use molasses, and that (most importantly) we all like.

We're slowly adjusting to this new way of doing things, but weekends like this--Canadian Thanksgiving--I look somewhat wistfully at the major grocery chains, where I used to be able to get everything in one fell swoop. This morning, it'll be three or four stops (depending on what's in stock where) to get everything to make Thanksgiving supper ... but the fact that I'll be able to come very close to what we used to make (without even thinking) will be more than worth it.

Tracking the cause

So, what caused William’s reaction?

William had a grilled cheese sandwich on multigrain bread, a few French fries, and some packaged, ready-to-eat grapes for lunch the day that he had his first serious reaction. Of these things, the only one that he hadn’t had before at that particular restaurant was the grapes, so that was where I suspected the problem lay.

The doctor whom we saw the day of the reaction said that his reaction indicated a food allergy and that, considering what he’d eaten, she strongly suspected a food preservative was the culprit.

The following morning I phoned the restaurant and talked to the manager. He was able to tell me who distributed the grapes and gave me that company’s contact information.

When I phoned the distributor, I discovered that the grapes were washed with potable tap water, then packaged. When I pushed a bit further, saying that I’d narrowed the source of the reaction down to the grapes, the representative with whom I spoke said, after a bit of thought, that all grapes were sprayed with sulphur dioxide prior to packaging and distribution.

A brief Internet search revealed that sulphites are one of the nine most common causes of serious food reactions in Canada. I was fairly certain, thus, that sulphur dioxide was the culprit, especially considering several cases of gastrointestinal distress that William had experienced earlier that month.

At the moment, William has only had one serious and three mild allergic reactions to food since the initial serious one. All have been to foods containing sulphites, particularly sulphur dioxide. We have an appointment to see a paediatric allergy specialist November 8, 2012, so we'll see whether we get a definitive diagnosis at that time. In the meantime, we're avoiding all sources of sulphites in an attempt to prevent further reactions.