This is a bit of a follow up to my personal story about being diagnosed with eosinophilic esophagitis. I was quite shocked to be diagnosed with this condition last year and it has been a big process for me.
If you want to hear from the beginning what happened and the whole story, then you can listen to episode 59, where I shared about getting my diagnosis and how I initially reacted and what I did with my eating, but I will give a real quick summary here.
Eosinophilic esophagitis, or EoE, is a disease that basically makes white blood cells build up in my esophagus, which at the time was making food get stuck. Fortunately, I never had to go to the hospital. Many people that have this condition do end up having to go to the hospital to get the food out of their esophagus.
The time before I went and got my diagnosis and really figured out what was going on, we were at a friend's house for dinner. We were eating Greek gyros and the first bite I had, the food got stuck in my esophagus. I went to the bathroom because it's quite uncomfortable having food stuck and not going down into your stomach and I was in the bathroom for about 20 minutes trying to get it out. And then my friend said, “Megan, this has been happening for a while. You need to go to the doctor.” And so I did and they did an endoscopy and in that process, they found the inflammation within my esophagus. They did a biopsy and that's how they diagnosed the eosinophilic esophagitis.
Basically what happens is, I am allergic to food and environmental allergens and that builds up these white blood cells and as they build up food then gets caught. It is a different type of allergy than an anaphylaxis allergy. It is an IGE allergy which means it impacts the digestive system versus an anaphylaxis reaction. So the things that I eat, I may not know that they are impacting my body immediately like you would if you were allergic to peanuts and you started not being able to breathe. It's all in my digestive track and not as obvious.
I went to an allergist, and they did a scratch test and found that I was allergic to so many things. The allergist told me I could either take the medication that the gastroenterologist gave me or avoid all these foods, then you should be okay and you shouldn't have problems with food getting stuck anymore.
Initially, I did follow a pretty extreme allergy avoidant diet. I did not eat so many things. I was dtermined to do an elimination diet to figure out which of these I'm truly allergic to, because the scratch test that an allergist gives for an anaphylaxis type of allergy is 95%. Accurate, but for the type of allergy that I have, that causes this eosinophilic esophagitis, they're not sure how sensitive the test is for that type of allergy. We still can use it as a helpful tool to figure out what I'm allergic to, but it's not 95% accurate like it is for an anaphylaxis type of allergy.
I knew that I didn’t want to be on medication every day, because there are some things that happen when you take the medication, so you then have to take all these other supplements. It was suggested to me that it was not good to take this medication every day if I could change my diet to not have this buildup of white blood cells in my esophagus.
Initially, I was really good about it. Just like any sort of diet right in the beginning, you are eating clean and doing a really good job. I felt really great too. But over time, I started to kind of miss things. And so I would cheat here or there. I will say I was not terrible at cheating and was doing pretty well.
But then this summer, we went on vacation and I just wanted to eat the food. I love food. I'm a foodie. I don't think there's a kind of food I don't like. Fom octopus, to snails to cheese to oysters, like all the crazy things. I've eaten a lot of different kinds of foods, because for me that's part of the experience. Experiencing culture and trying different things while traveling.
So we went on vacation, and I decided I'm going to just take the medication every day, even though I had not really taken it and just eat what I want to eat.
I had cheated here or there, and when I cheated, I would have different symptoms. Maybe not the tightening in my chest. But other symptoms like mucus in my throat or maybe a stomach ache or those sorts of things.
I had a second round of tests before I went on vacation that showed I didn't have as many allergies. So the doctor said when you do an elimination diet, you need to remove all of the top allergens of the people that have your condition,which are dairy, eggs, soy, and wheat.
So I eliminated those in addition to the other things that I tested allergic to.
How I did my elimination diet
For four weeks, I ate zero allergens, both the ones I scratched tested allergic to and also those that are very common within my condition.
For one day, you eat one food you want to test and then for three days, you watch your symptoms. So the first thing I tested was dairy, cow's milk and cheese. I should not eat that, just what I have found. And then you eliminate it again to test the rest of the things. So then I also tried eggs. And I will be honest I had like two eggs in the morning and then I didn't have eggs for the rest of the day, because it's kind of hard to figure out how to get eggs all day long. I don't think that I have had any issues with eggs. But I'm going to wait until the end of my elimination diet and I will test them again afterwards.
The next thing I'm going to test is sheep's milk, and sheep's milk cheese to see if I can handle those differently than cow's milk and cow's milk cheese. Because I really like cheese. And I would really like to have that back in my life, even if it's sheep's milk or goat cheese. So I'm going to test each of those individually, and then I'll get to the rest of the list.
Eliminating Natural Flavors
If you are trying to eat clean, or maybe you're doing an elimination diet like I am, natural flavors are a definite no, no. Why? Well, natural flavors are very much like natural fragrance and it's a big regulation loophole.
I did find a New York Times article, it was a q&a that really answered the question.
Q: I heard that natural flavors are not necessarily natural because of a loophole in regulations covering additives?
A: Government regulations define natural flavors as those derived their aroma or flavor chemicals from plant or animal sources, which makes them different from artificial flavors, which are man made chemicals that give it flavor and aroma. But the loophole here for non-organic foods is that the regulations do not restrict any of the other ingredients like preservatives or solvents that go into natural flavors.
So they could be originally derived from something natural, but then this loophole makes it so they can add preservatives, solvents, God knows what, within these natural flavors.
And they do not have to label them.
The company that creates the natural flavors does not have to disclose the ingredients to the company that is buying the natural flavor and then putting it into their product. The final product that you see on the shelves doesn’t have to be labeled either.
So I'm going to break that down a little bit more simply for you. Let's say you're buying a gluten free vanilla cookie and on the label it says natural flavors and you think like me, oh, I'm not eating gluten right now. I'm going to try these cookies. For me, it would be egg free, dairy free, gluten free, soy free, everything free. But then there's natural flavors in there. So the brand that is producing this cookie is buying those natural flavors from a company that is probably not disclosing what’s in the natural flavors that they’re selling..
So technically, even though the box says gluten free, soy free, dairy free, whatever free, that natural flavor could still have those ingredients within it.
This is very similar to how fragrance works and it is why natural fragrance doesn't mean anything in my book. The company that is buying the natural fragrance to put into their lotion, or their hair product or whatever it is, they're buying it from some company that's not telling them what is in their natural fragrance. And so even though they're just saying that their brand is paraben free or phthalate free, they actually don't know that because they don't even know what's in that natural fragrance.
The reason I bring this up is because if you're trying to eat clean, and you're eating food that has natural flavors in it, you really don't know how clean you are eating. You can't think that natural flavors aren't going to have any of those allergens or aren't going to have any of those crummy preservatives or solvents. Yuck!
I encourage you to start reading your labels because I think you will be shocked at how many products have natural flavors in them.
I think that we're getting to this place in our food industry where we need to start paying attention to this stuff, especially with what we're giving our kids. Who knows maybe my eosinophilic esophagitis is related to something that I eat every day or some sort of breakdown in our food system.
Right now. It's October and it's pumpkin everything and 9 times out of 10 that pumpkin flavoring is going to be a natural flavor. If you're making something at home, you just have to buy some pumpkin pie spice and have real natural flavor. There’s been a couple yummy and healthy pumpkin recipes posted in our Facebook community lately. I would love to see you join the group and participate in the discussion about toxin-free living!
Thanks for sharing this message with others and helping me make this planet happier and healthier one step at a time.
