I’ve been trying to find a way to write this in order to maintain privacy for P but still share enough details to be helpful for other allergy moms. It’s a fine line, which is why it has taken me so long to post. But I know other people find the allergy posts to be some of the most useful so here’s the latest.
Last week we went to Stanford for a screening. Ok, let me back up. Months ago I read this article and immediately reached out to the Sean N. Parker Center for Allergy Research at Stanford. They have long been the leading researchers in the food allergy arena so I figured I may as well try to get my son involved if there’s any availability. Stanford is just a few hours away and that’s something we should take advantage of! They emailed me back saying there weren’t any studies at the time but they asked for his medical history and allergies and such in the event that a trial did open up. So I collected the requested documents, got the blessing of our allergist, and emailed them back. I really expected nothing so my hopes were not high. A month went by – I kinda forgot about the whole thing – and then I got an email from them! WEEEEE!
Thank you for your interest in food allergy research at Stanford. The Sean N. Parker Center for Allergy Research at Stanford University conducts cutting-edge allergy research and clinical trials with the goal of preventing allergies and developing new and safe therapies.
Under the leadership and vision of Dr. Kari Nadeau, our center brings together leading clinicians, researchers, and a broad network of resources from across the medical community, all working to achieve a common goal: leading the way to an allergy-free world.
According to our files, your child is between the age of 1 and 4 years and may be eligible for an upcoming clinical trial. At this time, we would like to schedule a screening visit with you and your child.
OMG. To say I was thrilled would be a huge understatement.
I tried to talk myself down from all the optimistic thoughts that were racing through my head, but it was hard. What if he got to do the trial that gave increasing oral challenges of peanut doses and he ended up being able to “accidentally” ingest a small amount without, well, dying!?!
The reality is that this visit was not for any studies at all. Yet. They wanted to meet him, get his history and do a physical and then do scratch testing and blood testing to confirm his allergies, and then after ALL THAT he would be in their database for future studies IF HE FIT the criteria.
I’m still hoping he does get called to participate in their (groundbreaking!!!) research, but until then, we got new results from the scratch testing that we were over the moon about!
First the bad news: he is still allergic to peanuts, sesame, cashews (other tree nuts?), and dairy.
Now the good news: Former allergens soy and wheat tested negative. [Also walnuts tested negative (but this wasn’t a new result – his 9 month old blood tests also were a “0” for walnuts).]
TREE NUTS are confusing. They are all in their own category apparently and it’s all completely individual in terms of tolerance. P tested negative for both walnuts and pecans which are close relatives and therefore expected to align in reactivity, but he was split in his reaction to cashews and pistachios which are also supposed to be linked. This confused even the staff present. Most people who don’t tolerate cashews also don’t tolerate pistachios. And while P has never tried either, he is very reactive to cashews in blood and skin tests and shows little to no reaction with pistachios. Nothing is black and white with allergies. Everything is compared on a gradient and what’s more, it’s a constantly moving target. Back to back tests could even show different results! And blood vs skin testing results don’t necessarily parallel either. So confusing. The size of the reactive allergy welts are also compared to the histamine scratch as a baseline, so while pistachios were technically a “negative” because the site’s reaction was smaller than the histamine site, it still had some redness. I don’t know what to think. After they’d already done the first round of scratch testing I asked about other tree nuts and that’s when they told me they were all different. So I asked if we could do some more…which is when they added almond and hazelnut. The results were fuzzy. Both were smallish reactions about the same size as the histamine site. They classified the hazelnut as positive and the almond as unknown (negative?), but I could see them both going either way.
Prior to this, P had never had any tree nuts. Even though his blood test when he was 9 months old was negative for walnuts it was just easier (for others to understand) if we took a NO NUTS stance. I also didn’t know much about tree nuts and their classifications back then so I assumed his strong response to cashews would (should) translate to no tree nuts period.
After seeing a visual of his exposure to walnuts (which literally looked like nothing) I decided that once we got home we should try them…which we did. And…NOTHING HAPPENED! I blended two walnuts into his smoothie that weekend (when Kyle was around – just in case) and zero symptoms. Sweeeeeet! I waited a couple days before trying anything new because I figured that was a reasonable amount of time for any latent symptoms to show up.
Next up was SOY. Full disclosure, I gave him tofu once when he was a teeny baby and first starting solids. That was back when I thought his cradle cap, eczema, and constant spit up/regurg were just annoying things to deal with (and “just what babies do”). Maybe that’s the case for other kids, but for P, his skin and spit up was resolved when he stopped ingesting his allergens through my breast milk. So while I was a little scared of this new oral challenge, I kept reminding myself that he had it before and so his reaction would at least not be a life threatening one.
The first thing I gave him was a gluten free waffle with “canola and/or soybean oil” listed as an ingredient. There are a few reasons I chose this. First, soybean oil is not even considered soy as per the FDA. Meaning companies don’t have to label their products with a warning of any kind if they have soybean oil in them (I’m looking at you marinara sauce companies that shall remain nameless). While I think this is ridiculous for many reasons (like who wants soy in their marinara?) it’s not a battle I have the energy for right now. Anyway, soybean oil may or may not have even been in the waffles. That’s about as low of a dose as you can get. Also, it’s the form of soy that you are most likely to see on ingredient labels these days. Tortilla chips, crackers, and all sorts of processed food (even the “healthier” ones free of other allergens like gluten!) had labels with canola/sunflower/safflower “and/or soybean oil”. He ate one waffle and then we waited. Once again…NOTHING happened. The next day I gave him five edamame. Once again…nothing happened. The next day I gave him 15 edamame. Nada. Eggs sautéed in tamari the next day also had no symptoms. You get the point. Soy is safe. I consider this one of the biggest wins because now we can include SO MANY more plant based meals into our family’s diet. Tofu and tempeh and edamame are such solid proteins that I’m thrilled thrilled thrilled to reincorporate into the family meal plan. Weee!!!!
And now we move on to WHEAT. I’m not sure when or how I’m going to try this one. Kyle is out of town this weekend and some of next week and so I may just keep doing new kinds of soy and wait on wheat until later. TBD. For now I’m just so encouraged by this update. Not only does it expand his options, but it gives me hope that he can and will outgrow some of his other allergies. It’s just really wonderful news.
So if you see tofu (or walnut) recipes in the weekly menus to come, now you know why.