I’ve been trying to write this blog post for months. I know it’s been a long time since I’ve blogged, but I really need (and want) to start getting this information out in the world.

I just have not known where to start. So I’ll try and keep it simple and write different posts to talk about our experiences.

Since Leo was 7 months old, we’ve been dealing with food allergies. He is now 7 years old as I write this. Ever since his first reaction at 7 months old (swelling of the lips from a muffin), he’s had countless reactions to multiple foods and we worked our way up to 8 allergens… or so we thought.

It turns out, Leo has something called MCAS – Mast Cell Activation Syndrome.

To sum up this syndrome in an easy to understand way, the Mast Cells are the ones that recognize the food allergens and send out the “defense” to fight them causing the same (very real) symptoms as a food-based allergic reaction – hives, rash, anaphylaxis, etc. Leo’s immune system was going haywire because of the MCAS and the mast cells were recognizing foods he was NOT actually allergic to as allergens and fighting them off. Therefore, some of his anaphylaxis reactions were due to the MCAS and not true food allergies. Again, this syndrome mimics food allergies and can be triggered at any time by anything, but food being the most relevant trigger in our case. This doesn’t mean the reactions were any less scary or real, but simply that the foods we thought were causing them were not the actual root of the problem.

Because of his MCAS, he was not actually allergic to 4 of his 8 allergens – green peas, most seeds, quinoa, and soy. (He is allergic to flax seeds.)

He also recently outgrew his egg allergy – hallelujah! Praise the Lord!

Here’s why I’m telling you about all of this. We did not even know this condition existed, because with his past doctors, Leo would get skin tested whenever he had a new reaction or when it had been a year since his last appointment. During these regular skin tests, we were told the standard food allergy protocol – to avoid the food and go on with our day. This answer was not enough for me after years of dealing with food allergies and I continued to research allergy doctors. After hearing great things about the doctor we are currently seeing and how he had helped so many people, we decided to give him a shot and I’m so glad we did. He listened to us and actually diagnosed Leo and essentially “cured” half of his allergens.

I’m NOT saying our story is the same for everyone. Food allergies are REAL and Leo is VERY much allergic to dairy, peanuts, and tree nuts. He CANNOT have them nor can he touch them. I emphasize that simply because when people hear our story now, they let their guard down with the rest of his allergens thinking he will be fine. This is also why our doctor recommended to not tell his school just yet so they stay as on guard as possible, and we whole-heartedly agreed.

Our doctor had his suspicions that Leo was not allergic to everything we were telling him he had reactions too, and when we told him about the second time we had to epi him – because of a quinoa allergy – he was extremely confident Leo had MCAS. The reason for this was because, he told us “I have been practicing for 20 years and I’ve never had a patient allergic to quinoa. I don’t even have it here to test Leo for it because it’s never been an allergen for any of our patients.”

And we believed him because Leo has been eating the same cereal every morning for about 5 years that has quinoa flour in it. So when he had the anaphylactic reaction to quinoa, I knew something wasn’t adding up.

Turns out, it was the MCAS doing what it does best.

Once diagnosed with MCAS, Leo was put on 2 medications he has to take every night. These medications calm down his mast cells so that they will recognize the true allergens and allow him to eat the foods he’s not actually allergic to but would have reacted to in the past without the medication. I’ve had a lot of people ask me if he has to take them for the rest of his life, and the short answer is I don’t know. The doctor doesn’t like to make promises such as that because he’s so little his body is ever-changing. He could have to take them forever and he could get off them at some point in the late future. But for now, he is taking these medications.

I could go on and on and on in this blog post, but I think it would be best for me to wrap this one up and write a new one in regards to his food challenges and OIT therapy.

I’m putting this information out there to give you hope, to educate, and to remind you to find the doctor that will help you. Not all allergy doctors are created equal and you have to make sure you’re working with one who is truly in it to help you live the life you deserve.

Food allergies are hard, but you’ve got this. #foodallergystrong