Food allergies are a very personal experience, as every person has a different level of reaction to food’s they are allergic too. Some people are allergic to only the top 8 food allergies, while others have rare food allergies such as hot dogs, marshmallows, and avocado.


Most of Leo’s food allergies have been in the top 8, minus one rarity. Leo is allergic to flax seed. Let me rephrase that to say, Leo is highly allergic to flax seed. The smallest serving of flax seed causes Leo to have an uncomfortable throat, and immediate, severe vomiting with a lingering upset stomach. His reaction to this seed is so uncommon, his doctor has not had a patient in 20 years with this allergy. That, however, has not stopped us from learning how we can treat and overcome another food allergen.


Thus far in our food allergy career, we’ve cleared several allergens after Leo was diagnosed with MCAS (see post about MCAS here), and we’ve done Oral Immunotherapy (OIT) for dairy, hazelnuts, and pistachios. 


This week, we began OIT for Leo’s flax seed allergy. The kicker is, his doctor has never done a flax seed OIT protocol before, nor has he come across any other doctors who have done this protocol. After much discussion in a previous appointment about what flax seed OIT would look like, it was determined Leo would most likely be a case study since this is so rare. We also determined we would start just like we did with the nut OIT protocols, and we simply might have to change up the protocol as we go to ensure we achieve a successful end result.


I chose to write this blog post with the intention of sharing the beginning of our flax seed OIT journey, as well as sharing how OIT works. I get a lot of questions as to what it is and how it’s successful, so here’s how we’ve personally done OIT with our doctor. This may look a little different with whatever doctor you see, but this has been our standard protocol. 


1) Patient gets scratched with a diluted mix of the allergen. In Leo’s case, flax seed powder is mixed into a water solution. As you will see in the picture below, solution “F” has the highest concentration of flax. From there, the solution is cut in half and the liquid is increased (reducing the amount of seed exposure). That is solution “E”. They continue to cut the solution down until they have 5 different solutions to scratch and measure a reaction. Patient is also scratched with a control and histamine to have something to measure the food reactions against.


2) Patient waits 12 minutes and then reactions are measured against the control and the histamine scratch. The allergen reaction needs to be smaller than the histamine reaction in order to be deemed “safe”. 

Disclaimer: I am not a doctor nor do I recommend doing any of these procedures at home. If you are allergic to anything, go see your doctor for treatment plans. I am sharing for informational purposes only.


Scratch results after 12 minutes. You can see how large solutions “E” and “F”.

3) After measuring and determining which solution is safe to start with, patient ingests 4ml (or whatever docs recommended dosage is) of solution. Patient then waits 15 minutes for signs of reactions.


This is the flax seed liquid solution Leo had to ingest and then wait to see if he had a reaction.


4) If no reactions occur, patient takes another 4ml of solution dosage and waits 60 minutes for a reaction. If no reactions occur, the patient follows this protocol at home, and comes back to the doctors office weekly to up the dosage until they get to a “maintenance mode”. Maintenance mode (at least for us) means daily ingesting of the allergen at a specific dosage for 3 years.


In Leo’s case, 4ml of flax seed solution “D” caused him an upset stomach to the point where he had to lay down and cover his face because the light was bothering him. We waited an additional 10 minutes after the first 15 minute waiting period and it was ultimately determined Leo would take 2ml of the solution, twice a day until our next appointment where we would up the dosage.


Little man not feeling well.


The dosage Leo has to take at home, twice a day.


The idea of oral immunotherapy, as it’s been explained to me, is to not force the body into accepting a food it’s trying to reject, but rather coax the body into submission of accepting the food without reaction. This is why we have to start on such a minuscule level in terms of ingesting the allergen and work our way up. If we go too fast, we can cause the body to reject the food and we would then have to work backwards with the dosage to resume going forwards with the protocol. 


Oral immunotherapy has been an incredible solution for Leo’s food allergies. However, OIT may not be for everyone. If you have any questions on how this has affected our daily lives, please feel free to comment below and ask! If you have any specific questions on how OIT may work for yourself, please consult your doctor.


Leo doing homework at the doctors office since the appointments are so long.