Last night we gave Captain Jelly Belly an at-home allergy test.
(I really hope our allergist doesn’t read this blog — I’ll be in for one hell of a stern lecture.)
We’ve kind of lost faith in the whole allergy testing business. After fighting with our allergist for two years over the Captain’s milk allergy (we said he had one, prick testing said different), we finally got a positive skin test when we convinced our allergist to do the test with real, actual milk, instead of the purified milk protein syrum.
The Captain had been sick on and off for a long time before that diagnosis. For years we’d been searching for the one “magic bullet,” the one food that would be the answer to all our questions. If only we took him off milk, or soy, or wheat, or whatever that one thing was that was making him sick, he’d be magically all better and healthy.
We really thought we had found our answer with milk (he is also allergic to eggs and peanuts). But sometimes he’d still get hives or rashes from other foods, like soy milk, even though he (surprise!) does not test positive to soy in the skin test. All along we have suspected that there is a magic “something” in milk that he is allergic to — not the protein itself, but some sort of additive. Is it a colourant? A medicine that they feed to the cows? The Vitamin D that they add? Again, we were back to searching for that one thing that would solve everything.
This whole testing with actual milk opened our eyes to a new world. Although it is important to know what the Captain is actually allergic to, for future use, right now what we want to know is what foods are safe for him. He only drinks unfortified rice milk, because we know it is safe — and as a result, has no good sources of calcium or vitamin D in his diet. We make him take a calcium supplement, which he hates; he’s always asking if he can drink the fortified stuff or try soy milk, but every time we do try something like that, he seems to react.
Is it a real reaction, cross contamination from something else, or just the Captain having a wonky day? Who knew.
And now…we know. We think.
We took several brands and kinds of milks and popped them all open — rice milk, fortified rice milk, soy milk in two different brands, oat milk, and real cow’s milk. We washed the Captain’s arm well and sterilized six straight pins with alcohol. Then we put one drop of each kind of milk on his arm, just like at the allergist (I used a new, clean drinking straw for each kind to put the drop on), and gave each drop a little scratch with its own pin.
Then we waited ten minutes.
I swear, when I do decide to go back to work I should just open my own allergy business!
Anyway, he got hives in two places: cow’s milk, and one of the soy milks. But not the other soy milk. CURIOUS.
The one soy milk he reacted to contains something called carrageenan, a thickening agent used in almost all milk products and in many soy products, made from seaweed. It could be the magic bullet we’ve been looking for; certainly, like almost any food in the world, if you Google “carrageenan allergy” you’ll find all kinds of people who claim to be allergic. Unfortunately, it seems like there are lots of ways for carrageenan to sneak into foods without appearing on the label, and it’s very hard to test for.
OF COURSE.
But the real positive here is, there was no reaction to the fortified rice milk or the oat milk…so now we have some new options! Options with calcium! Options with Vitamin D!
We’re excited and happy. The Captain is overjoyed at getting to skip his calcium supplement his morning. YAY for home allergy testing, I say.
TurtleHead 
This is so interesting! I’m glad you seem to have figured it out!
That was a great idea.
awesome! Great work Dr. Turtlehead!
That is SO TOTALLY COOL! Excellent detective work, folks. And I don’t think you didn’t anything wrong. In fact, you process is just how they do it in the allergist’s office. I mean, it’s not rocket science, people. It just takes a great scientist to devise a good experiment, and fortunately your household has 2 of the best.
I think CJB is probably old enough (and heck, experienced enough) to start going to a non-children’s allergist, which might open your doors a bit to some specialists.
I’m sure you’ve heard me gush about my brilliant allergist who diagnosed my insanely rare allergy. There are great ones out there. They just might not deal specifically with kids.
Poor little guy! Glad you both figured it out. My little munchkin has no allergies and I know we are extremely lucky.
Good job.
Speaking of adult allergists, mine ROCKS. Love mine. There’s a long waiting list for him. If you want, I can ask the office to put you/CJB on their list. I’ve been going for shots for years…one of the advantages to getting your shots done at the allergist’s office is that they get to know you…
I think that’s just good detective work. And I’m sure CJB is pretty stoked to try new things.
Although I think Child Protective Serives might come after you if they read this blog, I commend you for being proactive! Carageenan is pretty evil. We’ve been avoiding it for years. Also, I wanted to say that the whole “calcium” thing is mainly a propoganda campaign by the dairy board so you shouldn’t worry so much about filling your kid with calcium. Calcium is a tricky thing. Meat products, caffiene, refined sugar, alchohol, iron supplements and iron rich foods and other stuff like that leach calcium from the body. So, if the boy avoids these things he’s 95 steps ahead of the game. Not that he should avoid iron rich foods, but maybe not eat them at the same time as calcium rich foods. Also, leafy greens provide a lot of calcium (how do you think cow’s milk gets all that calcium– grass!!). Nuts, especially almonds have lots of calcium – nut butter, almond milk… Also, have you tried goat milk products? Calcium without all the nastiness of cow milk products. And Vitamin D is the latest hottest thing. People used to spend a lot more time outdoors and had no problems with Vitamin D.
If you still want a supplement that’s yummy, try the natural food stores for liquid sunshine supplements. I believe Flora brand has a liquid calcium/D
Interesting… I know one of my coworkers had to fight to get the “advanced” allergy test. She’s allergic to formaldehyde.
I’m going to pass this onto a friend of mine whose son is having allergy issues. They think.
Very, very cool that you did this! I was tempted to do the same thing a couple of years ago but chickened out. I might in the future, though!
A friend of mine has serious allergies to Sulphites, which are used in the production of just about everything, from peanuts, to sauces, to corn syrup, to … well, everything.
He says it’s difficult to diagnose and lots of people who think they have peanut/nut allergies are really allergic to sulphites. (But then he says lots of things and listens to Lowell Green, so it should be taken with a grain of rice–so long as you’re not allergic to that too!).
– RG>
this is timely for me. my youngest is suffering from eczema and i am going to a NAET specialist tomorrow night with her who says she can isolate the allergy and eliminate the reaction. i am so curious to see if it works (and i’ve researched her past results – pretty impressive!)
My son didn’t test positive for milk the first time (did the second), and didn’t react to soy the first two times. His eczema seemed to get worse when he’d eat soy yogurt so I eliminated soy from his diet… ta da! NO MORE ECZEMA.
Like XUP, I’m wondering if you’ve ever tried goat milk for him. Simon can’t have cow products, but is fine with goat milk, goat cheese, and I make either goat or coconut ice cream for him.
Good work following your mama instincts!
lovely work mama! at 18 months, my son was only able to eat 3 foods until we started working with a homeopath. from the day he started taking the remedies she suggested, he was able to start eating many new foods. it has been a long process though, he is 2.8 months now, but he is finally at a good weight and eating foods in every food group. what he still avoids are acid rich foods, which are actually in most foods! all the ‘conventional’ tests his md have him, gave back negative to allergies but his reactions to foods spoke a much different story. we also saw a naturopath who tested him in a couple ways, and those tests came up with many allergic foods. but in the end, i found trial and error, in terms of giving him something and seeing how he reacted, was the only true test. we also stay away from all processed foods, and additives, which are nasty anyways. thanks for sharing your story. i know how hard it can be, but i suggest homeopathy.
i just realized you live in ottawa, well our genius homeopath moved there a few months ago. her name is pat deacon, and i know she has website.