Adrian is well over a year old, and it’s been a long time since I last tested dairy products other than butter (since spring, actually). I thought I’d try and see how his milk protein allergy is doing. Perhaps I can go back to a more varied diet?
By now I don’t miss milk products much, but it does complicate cooking, and eating out is a serious challenge. I’m glad if I find one milk-free meat-free option on the menu, and often have to ask the kitchen to skip the sauce, give me boiled potatoes instead of mashed potatoes etc. I’ve been eating a lot of sushi and pizza without cheese. (Which is a pretty poor alternative to real pizza.)
What I know and don’t know
I know that there are two types of milk protein allergy. One is a true allergy, “IgE-mediated”, with a fast reaction and more classical allergy symtoms – hives, itching, vomiting. The other is an intolerance, still an immunological reaction but “non-IgE-mediated”, with a delayed reaction and more gastrointestinal symtoms – reflux, abdominal pain, abnormal stools. All signs point towards Adrian having the latter. (Which is great, because this non-IgE-mediated version is much more likely to disappear, and much less likely to widen to cross-reactions to other allergens.)
I also know that non-IgE-mediated CMPI often disappears on its own in kids and around 90% are allergy-free by age three. But I realized I have no idea how it actually disappears. Does it happen fast or gradually over many months? Do the kids tolerate larger and larger amounts, or do their symptoms just become weaker? Do the symptoms change? – because obviously Adrian’s gastrointestinal system is much more mature now than a year ago.
I now also know that there are four main types of protein in milk that kids can be allergic to. I’ve learned from the internet that they may react to one or several of those, and there’s no real correlation between the different types. But I have no idea which one(s) Adrian might react to.
How to test?
When we first tested for CMPI we did an eliminiation/challenge test. I ate no dairy products for three weeks, and then ate normal amounts of milk again for one day. The result was unequivocal.
But I’m not so sure that this would be the right thing to test now. I could do a challenge, but if Adrian reacts, all it would tell me is that he reacts if I consume a lot of milk. But I don’t necessarily need or want to consume a lot of milk. If I can put parmesan on my pasta and cheese on my pizza every now and again, I’d be pretty happy.
So the alternative is to try with just a little bit. But that might also not be the right thing to test. Adrian might react, but not so much that it would be a clear signal. He might not scream with pain like he used to, just feel slightly sick and fuss a bit more than usual. We may just interpret that as ordinary fussing and I’d continue with milk, making him live with constant low-level stomach pain (for example) which I obviously don’t want.
Can I? Can’t I? Confusion.
A couple of weeks ago I had pizza for lunch. That seemed to go well. Then a cheese sandwich. That seemed to go less well – he slept like crap. Another week or so later I tried grilled cheese sandwiches, and he didn’t seem to react.
Around the same time we had him tested for milk protein allergy (skin prick test) and the test was a clear negative. Great, we thought, finally a clear answer! Let’s go!
So I ate home-made pizza on Saturday and pasta with feta cheese on Sunday. Adrian slept like crap again last night, and was crazy all day today. Hyperactive, racing around, unable to concentrate on anything, throwing things; grabs for food and then refuses to eat it; grabs for breast and then pushes it away… “crazy” is the best way I can describe it. What’s up?
Facts: a skin test is useless for this
What’s up is that the doctor needs to go back to school, it seems. I went back to the internet to learn more and immediately found out that skin prick tests are worthless in the case of non-IgE-mediated CMPI. They do not detect that type of reaction, they only work for IgE-mediated cow’s milk allergy.
The internet was less helpful in coming up with a plan for testing to see whether Adrian’s outgrown his CMPI. So it’s back to our own homebrew method, slow and steady. I will try a bit, wait a few days, try the same again and wait again. If everything is OK, I try with the next type of dairy product.
Right now it looks like I can consume small amounts of cheese that has been strongly heated. Cheese straight from the fridge is not OK. Next I should probably test whey products that contain no casein (the protein in cheese) to see if Adrian also reacts to the other milk proteins.
Food Allergy and Food Intolerance on Patient.co.uk
The diagnosis and management of cow milk protein intolerance in the primary care setting on PubMed – only an abstract is provided but a search for the exact title will likely turn up some unofficial copies of the article.