As I was thinking about this year, one theme kept coming back to me – my health. I have to finally make my health a top priority in our home. For the past many years I’ve either had to or chose to prioritize other things over self care – Caroline’s needs, pressing business needs, house needs, financial needs, etc. The last thing on the list was usually tackling my health issues.
That’s not to say I never took care of myself. I did. But this is a significant area of my life where I have repeatedly kicked the can down the road and I can’t do it any longer. It’s been four years since my allergist diagnosed me with Eosinophilic Esophagitis (EoE)which also has some version of silent reflux connected to it that impacts the EoE. I also have some kind of histamine response going on and sorting out which foods are triggering which issue can be difficult.
In those four years, I have done very little to get better. I’ve done plenty to not get worse including radical diet changes and multiple medications. I’ve reached a level where my last scope was completely clear of eosinophils and strictures which is a huge answer to prayer. You can make a gazillion changes to your life and diet and not get a clear scope because it’s not automatic with EoE. There are many people who have made much more radical changes than I have who never get a clear scope or even get worse. Getting a clear scope and knowing there was no further damage was huge.
But I have done almost nothing in terms of trying to add foods back in, eating a more balanced diet, etc. Partially because it is hard to potentially break what is fixed (as my doctor said yesterday). We spend a ridiculous amount of money on food each month due to the way I eat. Again, this was an area where I kicked the can down the road. I chose to spend more on food in order to focus on other things. But I can’t do it any longer and I don’t want to do it any longer.
Before we had Caroline and before the EoE, I had a pretty good selection of meals I would rotate through for the two of us. I was a good shopper and our grocery bill was reasonable. It became a bit of a struggle after Caroline, but still manageable. But once I ended up with EoE and couldn’t eat 99.85% of what you see in a grocery store? Meal planning and all went out the window.
One of the problems with diseases like EoE is that a significant part of the disease is also emotional and mental. When food becomes the enemy of your body and you don’t know exactly which foods are your specific enemy, it becomes a mental burden. Like many people with EoE, I’ve woken up from nightmares in which I’ve eaten something I can’t (language on last example).
It also becomes an emotional issue. EoE cuts you off from pretty much everything social because everything social revolves around food in our culture. People with EoE simply don’t eat food prepared by other people, especially when they are sorting out what their particular triggers are (something that can take years of elimination diets and scopes). Quitting Facebook was a huge bonus in this regard this past holiday season. Instead of a steady stream of pictures of food and celebrations revolving around food from November 1 to January 7, I saw nothing.
Sadly, there is no emotional or mental health support when you have something like EoE. I have to laugh at that commercial playing lately (Cigna, maybe?) that encourages you to talk to your doctor if you have emotional or mental health concerns. Why bother if the emotional and mental stress is caused by something like EoE? Even if your insurance policy covers things like counseling, it’s always subject to the deductible. It is never included like a yearly physical or flu shot. When people have these monstrous deductibles on top of insurance premiums that they already can barely afford, what good does it do to talk to your doctor about these issues unless you are specifically looking for cheap drugs to deal with it?
After interacting online with hundreds of EoE patients and/or their parents, I am convinced that emotional and mental health support should be part of treating EoE. But it isn’t. It should be for both the patient and their parents if the patient is a child. This disease takes a mental and emotional toll, but it’s not something that can necessarily be medicated. So I know many EoE patients and their families suffer with little to no emotional or mental health support other than what they can find in online groups.
Anyway, enough of that soapbox.
I’m to the point I can grocery shop and not get depressed by all the food I see around me. So now I’m ready to take it to the next level and try to more proactively meal plan for David and Caroline even though I can’t eat what they eat. There is always plenty of food in the house, but I don’t usually cook for them. I prepare my food and David prepares food for the two of them. (As a homemaker, that is also depressing for me, but I’m tackling one issue at a time right now.)
Right now I am not eating any foods from the following due to the EoE and silent reflux. (And when I say I’m not eating anything from this list, I mean nothing for the past three years. No cheating, nothing.) This includes any ingredients that are derived from these so anything that is, for example, a soy or milk derivative is out.
- Dairy
- Soy
- Eggs
- Wheat
- Tree Nuts
- Peanuts
- Fish
- Seafood
I am pretty sure I will never get dairy, soy, and wheat back based on a couple of accidental exposures I had and how much better I felt after I finally faced reality and quit dairy.
I also eliminated these for other reasons:
- Nightshades (potatoes, tomatoes, peppers, etc.)
- Legumes (beans of all kinds)
- Gluten
- Onion and garlic
- Cruciferous veggies
- Citrus fruits
- Sesame
- Almost all fresh fruits
- Most vegetables
There are other things, but those are the big ones off the top of my head.
So if you are looking at those lists and wondering what in the world I am eating, you are starting to understand my problem and why I can’t continue like this.
So my food-related goals are roughly:
- Cut our food spending by $400/month
- Try to get back one of the EoE elimination categories through food trialing
- Add at least 25 foods back into my life including one or two alternative flours such as cassava, arrowroot, etc. that allow me to make some kind of baked goods
- Raise my ferritin levels to within normal range (I wrote about my iron struggles here and here)
- Find 5 meals that all three of us can eat together and enjoy
- Find one place we can safely go out to eat as a family (This is probably not likely, but Chick-fil-A is a slight possibility if I can get a couple of foods back off the elimination list. Chick-fil-A is very allergen friendly. Otherwise the thought of letting other people prepare my food is honestly scary. People don’t understand or take seriously cross contamination and hidden allergens.)
I do have some other self-care goals for the year.
- Play the piano four times a week
- Bible reading and devotional time daily
- Listen to more good music
My other theme for the year is home. Some of you might have noticed that I’ve been focusing more on home themes lately, especially with the Homemaking section.
I’ve been systematically going through every drawer, closet, box, cupboard, etc. in our home and cleaning. I started last year with my Getting Rid of 1000 Things and have continued on. My goal is that by the end of this summer our home would be moving ready. In other words, if we were to decide to move, we would not have to sort anything. Everything in the house would already be designated as worth keeping and paying to move. All we would have to do is open a drawer, closet, cupboard, etc. and pack it up. No sorting or decision-making.
So often we live with clutter or small home improvements left undone that we immediately tackle as soon as we know we are going to list our home. It seems absolutely crazy to live like that. Tiny fixes that take thirty minutes go undone for years because we simply don’t take the time to do it until we are forced to do so. So this year I’m making it my goal for us to do many of those little things for our own benefit because we are worth it as a family.
My next area to tackle is the kitchen. Our kitchen is organized for the way I used to cook. I have one large cupboard that is full of baking equipment, but I rarely bake now because I can’t eat it and I simply don’t take the time to bake much for David and Caroline.
I have two other large bottom cupboards with Lazy Susan systems that are full of appliances I previously used rather frequently, but rarely touch now. Again, I need to think through what is in there.
Then after I remove what we really don’t use, I need to set things up for how we actually do live now. I also need to think through changes I can make to my kitchen that will encourage me to make an effort to cook more for myself rather than simply fixing the same things over and over again.
So most of my themes and goals for this year revolve around food. Eating it, fixing it, trying it, organizing it, saving money on it, etc.
We’ll see how it goes!
Kelley Sasur
HI Sallie,
We’ve discussed our food issues before on FB. I have MCAS and “newly” (2018) diagnosed celiac disease.
Wow, that list looks familiar. :o(
I completely understand the food fear! I struggle to let others prepare for me. In August of 2017 I began a limbic system retraining program. I had improvement in my MCS, MCAS, heat intolerance and oh – blessed food! In August of 2018 I asked my MD to run a TTG (since I was now eating wheat again!) to put the celiac “concern” to rest (I’m a gene carrier). No rest for me! Better to know, I’m grateful to know. The kicker: my body did better (reflux, digestion, skin) with wheat than it does w/ the non-gluten grains. But the labs were sky high and the endoscopy don’t lie! I don’t explain it, I just live it. ;o) Now, it is a matter of trying to reframe my own thinking, recognizing what keeps me healthiest and desiring to prep and eat it are not always on the same page (Think vegetable packed soup in July).
You have my sympathies for the nightmares and the fear. They can be triggers for symptoms and thus what feels like a never ending circle. You have my prayers for the moving forward, for setting reasonable goals, and for recognizing and being ready to tackle this. You are embarking on no small task- it goes so much deeper than “just food”. I pray you will have much wisdom as you proceed and succeed and God will indeed be glorified!!
Sallie
Hi Kelley!
It’s so good to hear from you!
It sounds like you’ve been on your own winding journey of health and food issues since we last talked. You have my sympathy as well.
I am not familiar with limbic system retraining programs so I will have to research them. Time to learn something new! I do believe we are very impacted by our vagus nerve which is something very few people understand or even know about.
Thank you for the kind words. Keep me posted and how you are doing too!
Sallie
Susan
Dear Sallie,
Just learned of your site in my issue of The Old Schoolhouse. I am so sorry to hear of your diagnosis. I have never heard of the condition you have, but I do know quite a bit about eosinophils and a bit about histamine. I am a homeschooling mother of 7 and have been researching various health information for 25 years, for my children and for me. I understand if you dismiss the simple things I am going to mention below, but my conscience forces me to mention them just in case they could be of help to you.
So I am just going to throw this out: the eosinophil count on a lab chemistry (as you probably already know) is a measure of histamine in the body. Basophils, usually measured at the same time, are like the “nuclear reactors” of histamine. If that number is 4 or more, you are considered to be highly allergic and a candidate for an epi-pen. All this to say, their are ways to lower the histamine/eosinophil/basophil count in your body. Vitamin C in various amounts and kinds is excellent. And amazingly, a simple B vitamin called, Niacin, causes your cells to release histamine! Thus, Niacin can be utilized over time, to reduce anaphylactic shock.
Two excellent books on these nutrients are Niacin, the Real Story, by Abram Hoffer, M.D. and Andrew Saul, Ph.D and Curing the Uncurable, by Thomas E. Levy, MD
I have learned to my great delight, that allopathic medicine is so often incorrect in its prognosis. So many “incurable” things are actually quite curable! God bless your efforts to research the diagnosis you have received.
Sincerely,
Susan Young
Sallie
Hi Susan,
Thank you for taking the time to leave such a detailed and helpful comment. I apologize it took me several days to respond.
I am always interested in learning about new angles to investigate so I will take note of what you shared here. I do believe histamine is a part of what I’m dealing with and not only the EoE diagnosis. This has been the case with other EoE people I’ve interacted with. Our bodies are so complicated that it’s like peeling back the layers of an onion whenever someone gets a diagnosis, isn’t it?
So glad you found me through TOS. Thank you for letting me know that as well.
Sallie