Asynchronous challenges

We're getting to the tail end of the discovery stage of our diet to find the cause of my son's eczema.  Last week my son challenged bread preservative (three crumpets a day, whether he liked it or not; he liked it) and I challenged salicylates again.  We'll do a glutamate challenge later this week, and then we have the option of challenging additives, challenging salicylates again (this would be my son only, as I have just done this), or starting the salicylate reintroduction.

Normally you don't repeat a challenge unless you have reason to believe the results will be different.  I challenged salicylates a second time because we suspected that my mood from the first challenge may have been due to other factors, including the condition of my son's skin during the challenge and anxiety about the results.  In contrast to my first salicylate challenge, which was done at the same time as my son was challenging salicylates and was our first challenge, this last week I experienced no listlessness or irritability, nor did I have any digestive discomfort, so I have concluded that I do not have a sensitivity to salicylates.

The argument for repeating the salicylate challenge with my son is that the results the first time were inconclusive; his skin, though possibly better than it had been prior to the start of the diet, was never clear of eczema, and the dermatologist pointed out that skin irritation that is already present will change intensity without provocation.  We've also discovered recently that even when we clear all signs of eczema by applying cortisone and strictly follow the diet, it takes only three days for some irritation to reappear, so there is some background noise, making it difficult to ascertain the results of any challenge ('his skin got worse, but how much of that was due to the food versus what would have happened anyway').  We observed this pattern during the recent bread preservative challenge, when his skin slowly got worse throughout the challenge until we used cortisone at the end to clear his skin for the next challenge.  The big question is: how much worse?

Perhaps the diet isn't working at all for him.  Have I deluded myself into believing that his skin improved?  Right from the start I struggled to find a way to codify the condition of his skin.  With each new food diary (we're on our third) I have tried to clarify the meaning of the 0-5 scale that I ended up using.  In retrospect, there has been much more value in the notes I've kept describing the locations and extent of the irritation than in the numbered scale the dietitian recommended, but I didn't work that out until I was into the second notebook and starting the challenges.  Realistically, he needs to do the elimination diet for 13 days after clearing his skin with cortisone to find out what happens so we can use the results to filter the results of the longest challenge (salicylates: three days of elimination prior to starting, seven days of salicylates, and three days of elimination following).  But honestly, after three months of this I don't know how much more of it I can stand.

We can skip the second salicylate challenge, assume that my son is moderately sensitive to salicylates based on the results of the first challenge, and start the reintroduction.  To reintroduce salicylates, you eat a very small amount of a food that contains low levels of salicylates once every few days.  After two weeks, if your symptoms have not worsened, then you increase the amount or frequency.  You continue this until your symptoms worsen, then back off to the last level and maintain that (or less).  But since my son's skin will worsen on its own, without the contribution of salicylates, this process would have us conclude that he can withstand no amount of salicylates.

So my conclusion is that we will both challenge glutamates this week, which requires eating soy sauce and parmasean cheese, then my son will challenge salicylates again.  Hopefully we will either see a clearer signal or no sign at all (preferably the latter).  We'll continue to avoid additives, but following the final challenges we will not be remotely as fastidious about what we eat.

Allergy tests reveal error in elimination diet

We finally met with the dermatologist this month, who performed skin prick tests on my son to determine whether he has allergies to a number of common allergens.  As it turns out, he is allergic to egg whites, dust mites, and peanuts.  The good news is that he is not allergic to soy.

It is common for babies to have an allergy to egg whites, and also common for them to grow out of it by the age of two or three.  According to the doctor, my son's reaction was mild, and the allergy is probably already diminishing, so we'll avoid egg whites until a skin prick test indicates that it's okay to challenge them again.

During our elimination diet we've eaten eggs regularly, and, looking back over our food diaries, my son's skin worsened most of these times.  The presence of eggs in his diet has certainly clouded the results, and emphasizes that we should have done the allergy testing before commencing the diet.  My hope is that eliminating eggs from his diet will cause a further improvement in his skin.

I'm annoyed about the dust mite allergy, but not terribly concerned.  We will have to be more diligent about cleaning the house, and we are reconsidering replacing the carpet with wood floors rather than new carpeting.  Fortunately, we were planning on replacing the carpeting anyway, so it's not a waste of good flooring.

I'm definitely more concerned about the allergy to peanuts.  All the information I can find indicates that people rarely grow out of it and that any peanut allergy has the potential to be anaphylactic (translate: life threatening).  This means we will never be able to be carefree about eating with our son again.  Not only that, but we will probably have to give up eating peanut butter, Reece's peanut butter cups (not widely available in Australia anyway), and Thai food, due to the possibility of exposing him to peanut.  I'm very frustrated at the moment, because I was given very little information from the dermatologist and will have to wait two more months before I can get more information from an allergist.  A curious silver lining to this is that the incidence of peanut allergy is  becoming much more common than even just a few years ago, so increased demand for peanut free food may make it easier to get it.

I thought my son's skin looked pretty good when we visited the dermatologist, but when the dermatologist chastised me for not using the cortisone I realized that the eczema irritation really was pretty extensive.  He explained that if there was any irritation then the eczema could flare with no apparent reason and create confusing results during the food challenges, which of course perfectly describes what happened during the food challenges we've already completed.  Therefore we are taking a different approach now, using the cortisone to eliminate all signs of the eczema (if it's even possible), use the elimination diet to keep it clear for a few days, then do the challenge.

We also met with the dietitian this week, who tried to decipher our food logs and concluded that my son is probably not sensitive to amines or soy (she had never heard of someone having problems with soy without testing positive to a soy allergy), so we have reintroduced those into our diet.  He probably is sensitive to salicylates, and so we will slowly introduce salicylates into his diet after he finishes challenges for glutamate and bread preservative.  Now that we know about the egg allergy, I'm tempted to redo the salicylate challenge, but that will depend on whether we can get his skin clear enough to make the signal stand out from the static more clearly than last time.

We've now been on this diet for more than two months and I'm getting tired of it.  I thought we would be done with it one day, that we would be free to eat just about anything we wanted, but now I'm realizing that it was probably good practice for what lies ahead with the peanut allergy.  Food that may contain peanuts is even more common than food that contains soy.  Already I've found three things in our cupboard that may contain traces of peanuts, including the cereal my son has for breakfast every day, and it looks like we will be doing a lot of home cooking in the future.

-----------------------------------------
I found some more balanced information about peanut allergy (well, technically, my dad found it while I was lamenting about how alarmist all the information I found was).  It says that only 1/3 of the children who test positive to peanut allergy with a skin prick test will have any symptoms, and that the vast majority of people who do have symptoms will get hives, experience abdominal pain, or start vomiting.  The page states that allergies to peanuts that are severe enough to cause anaphalactic shock are extremely rare.  Reading this made me feel much better, and when I consider how often I scraped peanut butter out of the jar with my finger in the first year of my son's life, I now recognize that if my son hasn't had a severe reaction by now, then he's not going to have one.

Defeated by amines

It's been 62 days since we started our elimination diet to identify the causes of my son's eczema and I'm starting to feel defeated.  We've finally completed our amine challenge and now my son's eczema is the worst it's been in nearly two months.  During this period we've also faced two birthday parties, a Christmas party, Christmas dinner, and a week away with friends.  All of these occasions were poignant reminders of how little "normal" food we can eat.

It took three weeks to complete the amine challenge.  First we had to wait for his skin to clear from the previous challenge.  Then we delayed the start of the challenge so it would not interfere with his birthday party.  Next we had a false start when we found him chowing down on salicylate laden watermelon at a neighbor's Christmas party, and then we had to wait several more days for his skin to clear again before starting the challenge in earnest.

Amines result from the breakdown of proteins, and are found in chocolate, cheeses, old meat, fish,  and poultry (including "fresh" meat that has been stored in cryovac packaging, meat that has been frozen for a long time, and ocean fish that is caught a long time before it reaches the market), the skin of poultry (and probably of cows, pigs, and sheep as well, but we don't usually eat these), a number of fruits and vegetables and products derived from them, and most alcohol products.  For the challenge, we were required to consume bananas and chocolate in quantity for a week.  We were also allowed to eat papaya, tuna, and Colby cheese.  My son, who had never tasted chocolate before, was in heaven despite being restricted to very dark chocolate.  The first night of the challenge we had tuna carpaccio and banana splits, and the rest of the week we indulged in toasted cheese sandwiches and chocolate chip cookies.

His skin actually looked quite good during the challenge, which was belied only by the curious red circles that appeared in his armpit on the first day.  We were optimistic that we would soon be able to permanently reintroduce some foods into our diet, but three days after the end of the challenge we were faced with itchy eczema on his tummy, lower back and bum, his upper chest, the back of his neck, on his thighs, and behind his knees, with no alternative explanation to the recent amines.

The literature explains that there's little point in doing the remaining challenges (MSG/glutamate, Propionates, Sorbates, Benzoates, Antioxidants, Colors, Nitrites, and Sulphites) if you respond to both salicylates and amines because you will probably respond to everything else, which means we are now faced with an indefinite period on the elimination diet.

I now realize that I commenced this project expecting it to end after a month or so.  Two months into it we still haven't even finished the first round of challenges (we still need to challenge soy, which would normally be done prior to salicylates and amines) and are likely to have to follow it for many more months before we can enjoy only a few more of the foods we ate before we started the diet without having adverse reactions. 

At times like these it's tempting to say, stuff it, it's too hard.  The food we eat is quite good, but the constraints of the diet are antisocial. We cannot eat out at all, and I've had to provide virtually all our food when we've gone to parties (except at one birthday party, where the host gets a gold star for making sure there was a meat, a vegetable, and an hors d'oeuvre that we could eat).  When trying to plan a recent Christmas dinner with friends it became clear that it was too complicated to ask anyone to cook according to the
constraints of the diet, and it is now obvious that nothing ever satisfies the constraints of the diet just by chance.

So what's keeping me going?  Quite simply, it's the prospect of eliminating my son's eczema, reducing the likelihood of him developing asthma and hay fever, and saving him from the fate of his grandfather, whose childhood was shaped by asthma attacks, endless trips to the allergist for injections, and his mother wrapping his cracked hands each night to soothe them.