Who knew a 3-letter word could be such a royal pain in the ass?
Living in the #1 state in the union when it comes to soy production (Go Illinois!) I knew it was a commonly used legume. According to the internet, and the government's website on soy production, the vast majority of soy grown in the US is consumed by animals. The next most common use, and subsequently the bane of my existence the past 2 weeks, is that it's made into oils which, in turn, are used in everything.
Ok not everything. I have yet to run into soybean oil in a container of strawberries. But there's still time.
As I mentioned in our 200th post, I've started a strange elimination diet in that it's not the typical six/eight food elimination diet commonly used as a treatment for eosinophilic esophagitis (EoE), rather a modified version that allows fun things like dairy and eggs but excludes things like celery and apricots. The diet is based off of skin prick allergy testing I had in May, which actually has a pretty high false-positive rate (up to 50% for some foods), so I'm banking on it all just being wrong.
One problem with that theory is since starting this diet 2 1/2 weeks ago, my EoE symptoms have all but disappeared. I went from near-constant burning in my esophagus and daily dysphagia (i.e. this food better go down eventually) to only an occasional bout of heartburn. I was starting my day with coffee and non-dairy creamer (soy) and ending it half the week with a craft beer (wheat, barley). In between I was eating various vegetarian foodstuffs (soy), finishing off my kids' peanut butter and jelly sandwiches, and having a few chocolate covered almonds as an afternoon snack on the regular. Basically eating or drinking everything that I'm not supposed to have on a daily basis.
I'm cured! It's a friggin' miracle!
Or, maybe it's just all psychosomatic - the "nocebo" effect, as it's called. If you remove a food from your diet and you think it will make you better, it does. This phenomenon was demonstrated in a follow-up study in Australia re-evaluating non-Celiac gluten sensitivity and led to the discovery of how FODMAPs, or these thing-a-ma-bobs found in a lot of foods, not just gluten-y foods, may contribute to irritable bowel syndrome (IBS).
My nocebo effect theory will be tested on July 5th when I get another endoscopy to check how things really look and if there are any eosinophils still hanging around my esophagus. I'm cautiously optimistic that things will look better, but part of me expects to be told "nope, still there. Now you have to eliminate wheat, too."
I mentioned in my last post that I study quality of life and other psychological issues in people living with EoE as part of my part-time job at Northwestern University. I also see a handful of patients with EoE in my practice. So I've heard stories upon stories about life on some form of elimination diet. These stories spurred the 6 questions we wrote on our questionnaire to measure quality of life that are specific to being on an EoE diet:
I worry when I'm out that I won’t find something to eat. Check. I took my husband out for his birthday the other night to our favorite German restaurant and just read the menu over and over and over to find something that would be ok, and there simply was nothing except for a lame salad. Germans are not known for their salads. Even the cider on tap had apricots in it.
I worry about eating out for fear of contamination. Check.
I spend a lot of time planning my meals. Not really, they're usually some combination of fruit (but no apricots!) and cheese sticks. So I should be spending more time planning my meals.
I find it troublesome to read food labels and shop at special stores. Troublesome isn't the word I'd use. It's almost reflexive at this point to check the label. What's troublesome is the near-constant disappointment that something contains soy. Or peanuts. Or almonds.
Side note: In my last blog, I scoffed at celery and buckwheat being simple things to remove from my diet. Both of those have shown up on food labels. Apparently celery is naturally high in nitrates and farmers who run small operations use celery juice as a preservative in bacon. I have bacon in my fridge with celery on the label as an ingredient. Bacon.
And buckwheat is used in one of my favorite "top 8 free" snack bars from Enjoy Life, which I bought in bulk off Amazon before I realized this was the case. My kids are enjoying them.
I find myself spending more money on food because of EoE. Maybe a little.
I have difficulty finding foods I can eat because of my EoE. If I'm prepared, then no. But gone are the days of just grabbing something out of the pantry after a 10 hour day at the office and I get home and cooking is the last thing on my mind. Even my easy go-to of raw vegetables and dip is out the window because dip has soy in it. As do practically every salad dressing on Earth.
I have yet to bring myself to eat raw broccoli plain. My 1.5 year old son does that and, frankly, I'm a little worried about his decision making abilities.
It is not lost on me at all that my challenges on this diet are small in light of the fact that millions of people in the world are hungry right now and knowing where their next meal will come from is an enormous anxiety. I have food I can eat, quite a bit actually, if I put the time into it. I have the resources to buy fruits and vegetables and specialty bars with buckwheat in them.
This diet is a pain in the ass, but if I keep perspective - it's making me feel better, it's hopefully repairing the damage to my esophagus, I have food I can eat - versus focusing on the inconveniences it doesn't fester in my head.
But I do think we could cool it a little with the soy, ok US food industry?
--T2
Living in the #1 state in the union when it comes to soy production (Go Illinois!) I knew it was a commonly used legume. According to the internet, and the government's website on soy production, the vast majority of soy grown in the US is consumed by animals. The next most common use, and subsequently the bane of my existence the past 2 weeks, is that it's made into oils which, in turn, are used in everything.
Ok not everything. I have yet to run into soybean oil in a container of strawberries. But there's still time.
As I mentioned in our 200th post, I've started a strange elimination diet in that it's not the typical six/eight food elimination diet commonly used as a treatment for eosinophilic esophagitis (EoE), rather a modified version that allows fun things like dairy and eggs but excludes things like celery and apricots. The diet is based off of skin prick allergy testing I had in May, which actually has a pretty high false-positive rate (up to 50% for some foods), so I'm banking on it all just being wrong.
One problem with that theory is since starting this diet 2 1/2 weeks ago, my EoE symptoms have all but disappeared. I went from near-constant burning in my esophagus and daily dysphagia (i.e. this food better go down eventually) to only an occasional bout of heartburn. I was starting my day with coffee and non-dairy creamer (soy) and ending it half the week with a craft beer (wheat, barley). In between I was eating various vegetarian foodstuffs (soy), finishing off my kids' peanut butter and jelly sandwiches, and having a few chocolate covered almonds as an afternoon snack on the regular. Basically eating or drinking everything that I'm not supposed to have on a daily basis.
I'm cured! It's a friggin' miracle!
Or, maybe it's just all psychosomatic - the "nocebo" effect, as it's called. If you remove a food from your diet and you think it will make you better, it does. This phenomenon was demonstrated in a follow-up study in Australia re-evaluating non-Celiac gluten sensitivity and led to the discovery of how FODMAPs, or these thing-a-ma-bobs found in a lot of foods, not just gluten-y foods, may contribute to irritable bowel syndrome (IBS).
My nocebo effect theory will be tested on July 5th when I get another endoscopy to check how things really look and if there are any eosinophils still hanging around my esophagus. I'm cautiously optimistic that things will look better, but part of me expects to be told "nope, still there. Now you have to eliminate wheat, too."
I mentioned in my last post that I study quality of life and other psychological issues in people living with EoE as part of my part-time job at Northwestern University. I also see a handful of patients with EoE in my practice. So I've heard stories upon stories about life on some form of elimination diet. These stories spurred the 6 questions we wrote on our questionnaire to measure quality of life that are specific to being on an EoE diet:
I worry when I'm out that I won’t find something to eat. Check. I took my husband out for his birthday the other night to our favorite German restaurant and just read the menu over and over and over to find something that would be ok, and there simply was nothing except for a lame salad. Germans are not known for their salads. Even the cider on tap had apricots in it.
I worry about eating out for fear of contamination. Check.
I spend a lot of time planning my meals. Not really, they're usually some combination of fruit (but no apricots!) and cheese sticks. So I should be spending more time planning my meals.
I find it troublesome to read food labels and shop at special stores. Troublesome isn't the word I'd use. It's almost reflexive at this point to check the label. What's troublesome is the near-constant disappointment that something contains soy. Or peanuts. Or almonds.
Side note: In my last blog, I scoffed at celery and buckwheat being simple things to remove from my diet. Both of those have shown up on food labels. Apparently celery is naturally high in nitrates and farmers who run small operations use celery juice as a preservative in bacon. I have bacon in my fridge with celery on the label as an ingredient. Bacon.
And buckwheat is used in one of my favorite "top 8 free" snack bars from Enjoy Life, which I bought in bulk off Amazon before I realized this was the case. My kids are enjoying them.
I find myself spending more money on food because of EoE. Maybe a little.
I have difficulty finding foods I can eat because of my EoE. If I'm prepared, then no. But gone are the days of just grabbing something out of the pantry after a 10 hour day at the office and I get home and cooking is the last thing on my mind. Even my easy go-to of raw vegetables and dip is out the window because dip has soy in it. As do practically every salad dressing on Earth.
I have yet to bring myself to eat raw broccoli plain. My 1.5 year old son does that and, frankly, I'm a little worried about his decision making abilities.
It is not lost on me at all that my challenges on this diet are small in light of the fact that millions of people in the world are hungry right now and knowing where their next meal will come from is an enormous anxiety. I have food I can eat, quite a bit actually, if I put the time into it. I have the resources to buy fruits and vegetables and specialty bars with buckwheat in them.
This diet is a pain in the ass, but if I keep perspective - it's making me feel better, it's hopefully repairing the damage to my esophagus, I have food I can eat - versus focusing on the inconveniences it doesn't fester in my head.
But I do think we could cool it a little with the soy, ok US food industry?
--T2