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. 🙂
This is incredible news!!! I’m so excited for you guys with respect to all of the results, but the likelihood of outgrowing tree nut allergies is less than 10%.
I also can’t believe how similar our stories are. I have been reading your blog and loving your recipes since back before our babies were around. They were born days apart and have such similar issues with respect to allergies. Mason had constant cradle cap, severe eczema and I’ve had to throw out nearly all of his baby clothes because he spit up consistently. Mason reacts strongest to cashews in testing, but also to walnut too so my hopes of outgrowing those are slim although he has never actually been exposed. He still tests mildly positive to dairy, soy and wheat, but our allergist wanted to try oral challenges just to be sure. He passed all three (!) although I still suspect dairy causes an upset stomach. We’re also left to deal with peanuts, sesame, tree nuts and eggs but it’s SUCH a relief to knock those others off the list. I still cook mostly dairy free and have been adding wheat into his diet where possible but haven’t yet got inspired about soy enough to attempt it. Looking forward to those upcoming soy recipes from you since our avoidance list is so similar 🙂
Again, so much joy for your family!!
That is such great news, Elise!
SO MUCH IN COMMON! I always love your comments because it’s nice to feel like I have another mom out there going through the same stuff…turns out we are living things way more parallel than I even realized! Again, I’m so thrilled for Mason…I will probably get the nerve to try wheat sometime this coming week on one of the days Kyle’s at least not out of town completely.
The peanut reaction site is STILL bumpy! Now, even over a week later!! Crazy! [I think the staff was a little nervous sending us home even after he got steroids and antihistamines]
Thanks Lee!!
So happy for you and P! I’ve been reading your blog since the early days and have since gotten married and had a daughter. I’m really amazed by your dedication and positivity in regards to being as safe as possible with allergens while still providing nourishing food. Well done you!
Thank you so so much Rosie. WHat a kind comment to receive. And congrats on your marriage and daughter 🙂
Hooray for more food options for P and you all!!! Thanks for sharing your journey with us 🙂
This is fantastic news Elise!! Well done P for getting through all those tests too. Not easy for a 2yo! Im really happy for you guys, what an encouragement! 🙂
Woo woo! Such great news!
We went for an allergy appt recently with theo and it’s complicated! We’re still avoiding all nuts other than almonds for now.
Xxx
Hi Elise,
My son has similar allergies. He outgrew the dairy last summer at the age of 6. He’s still allergic to peanuts, cashews and pistachios. He’s not allergic to almonds though. His bloodwork and skin prick showed a slight reaction years ago, but we had already had him on almondmilk and almond butter. His initial allergy was just dairy through by breastmilk, so my pediatrician had me start him on almondmilk at age 1. So, there’s hope for other nuts! But the blanket approach of no tree nuts is much easier to tell others who aren’t his primary care taker. And, that’s awesome you are close to a research center!!! We are in Florida, so I’m hopeful the UM campus might get a research program going as well. Best of luck! And as a side note, I have two other little guys who seem to be allergy free!
I totally get you on the soy-labeling frustration, as someone who has been dealing with recent allergen testing results saying I’m allergic to soy. Blargh. Thrilled there is progress in both the medical and ease-of-food-prep areas of your life for P! Huzzah!!!
Just wanted to chime in on the allergy to tree nut topic. Super interesting as I am the complete opposite as P and it makes sense to me. I’m now 26 and have had a “tree nut” allergy since my parents fed me pecan pie when I was around a year old. I’ve trialed some things on my own (mainly in my teen years) as nuts are in a lot of things and I usually have the same reaction… Itchy, red skin, hives, itchy throat, and not anaphylactic so it’s less worrisome to me. But even if I have just the smallest amount (eg: accidental bite of pesto or chocolate) I will know that I had nuts I’m allergic to. Anyway, after all these years I am okay with cashews, almonds and pistachios, but NOT okay with hazelnuts, pine nuts, pecans and walnuts. So there might be something to this “tree nut” allergy research!
Awesome info! Thank you so so much and hooray for your other allergy free kiddos. V will be trying solids so soon and it will be so interesting to see where it leads us with allergies. Obviously they are both so young now but if you have any advice on handling feeding kids who can’t all eat the same stuff and explaining it to them please share! Until then, I will hope that he outgrows most of them before it gets complicated 🙂
Thanks so much for your story – it’s so interesting to me, but so complicated. I love getting as much info as I can and personal stories are especially interesting. Did you ever have an anaphylactic reaction when you were little or was the pecan pie thing the same reaction as you have now (hives, itchy throat, etc.)? Has there been any increase or decrease in symptoms? Were you allergic to anything besides tree nuts when you were younger that you outgrew? How about peanuts or sesame? Gah! So many questions! 🙂
Yay – that is such exciting news for you! We are working through the opposite; my ‘allergy-free’ second child seems to be struggling. Already taken him off dairy (big sister allergic to this), & now it looks like gluten might also be a problem *sigh*! Never mind, with hubby allergic to gluten, dairy & also fructose – at least we know what we’re dealing with!
So glad to hear that there’s hope for your little man in the future. Babies have such weak, non-existent immune systems, that maybe he’ll continue to outgrow his sensitivities as he gets older. Best of luck!
Oof, you deserve mega props for wading through all those intolerances and allergies…it’s a tough world to navigate but sounds like you’re the one for the job. Good luck with your second kiddo’s trials.
Yay for having soy as an option! Lydia also had dairy and soy reactions at 7 months but we recently tried soy and so far it’s been awesome. That’s the only kind of milk she has ever liked too. We will be trying dairy soon, I’m so nervous about it though.
Hi Elise,
I’ve been following you and your family for a long time, love your recipes and pics of your kiddos:)
I have a 4.5 month old daughter who has had a rash on diaper area/ stomach/ neck for over a week now, and we’ve gone through a few different explanations (heat rash, typical diaper rash, yeast) and treatments (no cream to dry out, eczema lotion, anti fungal). My next thought is something I’m eating.. I tend to eat the same foods, I’m lactose intolerant so avoid dairy and mostly vegetarian but I do eat sit in sm amounts and wheat, eggs, lots of nuts… My question is did you notice any reactions with P before he started solids? I’m wondering if I should try eliminations some foods from my diet..
Thank you for sharing your experiences! It really is so helpful to read..
I hate to be there bearer of bad news but yes – basically from birth he had cradle cap and eczema. His diaper rashes weren’t terrible, but they came and went, and we just figured it was due to the cloth diapering. The spit up was also very significant. This was all long before he started solids 🙁
My girlfriend just started Dr Sears’ breastfeeding diet and while I don’t think you need to go that extreme for the full 2 weeks, she says it is working and her little guy is doing way better. She’s introducing one thing at a time…and yesterday she had one sip of her husband’s home-brewed beer and boom, spit up. So I think even a tiny bit can affect them when they are so young. Hope that helps!! Good luck!!!
It’s soooo nerve wracking. Emotionally exhausting. We tried wheat yesterday day morning and it was not a success. By 11 am I was ready to call it a day. 🙁 I hope your dairy trial goes okay!! Adding soy in is definitely a big step!
Thank you for your input, Elise. We aren’t ready for solids yet, but I’m already getting a little nervous. I’m doing sort of a reverse Sears diet- removing all the major offenders (wheat, corn, soy).. have noticed a difference for sure. Thank you again for your suggestions, and please keep sharing P’s experiences!
Those are exciting results!!
Just being able to add in tempeh, edamame, soymilk, and tofu will add so many more options for him- not to mention what a relief to no longer worry about “traces of soy” or soybean oil.
Hope that the experiments with wheat also go well 🙂
Even if he doesn’t qualify for an allergy study (how could he not ?!?) just this one visit has been so informative!
I will – and good luck to you as you start solids. I really really reallllly hope allergies aren’t the issue for you. Perhaps it’s just a short term sensitivity while BFing (fingers crossed).