Eosinophilic Esophagitis – What is it Anyway?!

I have eosinophilic esophagitis. I’ve briefly explained it before in my “World Rare Disease Day” post and in “My Chronic Illnesses part 3.” However, I wanted to explain it in more detail because it’s probably the condition I get asked about the most.

I do feel the need to add my disclaimer to this post: I AM NOT A DOCTOR! The information in this article is for awareness only and is not intended to diagnose or treat any conditions. If you suspect you may have eosinophilic esophagitis, please talk to your doctor before taking action.

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Allergies: The End of the Road

I’ve hit the end of the road with my allergies, apparently. I went to my ENT/allergist on June 2nd, to follow-up about what the specialist immunologist/allergist had to say. Sadly, the super specialist just wanted to focus on my eosinophilic esophagitis (EoE) and didn’t care about the reason I was actually there: I would massively overreact to every allergy shot I got at doses most people don’t ever react to (even anaphylactic people). Even though they want me to come back, I will not be returning to the super-specialist because my EoE is being managed by my gastroenterologist and my ENT/allergist is more concerned with my allergies than them. Continue reading

LEAP Diet: Changes to Phase 1

When we first setup phases ½ and 1 of my LEAP diet (see this post), I was told to email Kara (dietitian) near the end of my ½ phase so she would know my progress. Unfortunately, with everything that has been going on with my health, the email was really long and not very happy. Because of everything going on, and my mental health struggles during this time, Kara decided that instead of doing the even stricter phase 1, we would liberalize my diet. Now, I can have all of my green foods and chemicals. I have to stick to tested ingredients only (with one exception), and I did go through the list and make sure I removed foods that were naturally high in the yellow and red chemicals.

The one exception to “tested ingredients only” is that Kara has allowed me to have Trader Joe’s Rice Milk. The ingredients list is exceptionally short and boring; it’s mostly just rice, salt, water, and some added vitamins. I already knew I loved their rice milk, and I was struggling without having a milk. (My homemade rice milk was disgusting.)

Some general rules for my “liberalized” diet:

  • I cannot have any frozen or dried fruits or vegetables. Really, I can’t have processed fruits or vegetables because they usually contain sodium metabisulfite, which is my only red chemical.
  • To avoid sulfites in general, I need to avoid: sulfur dioxide, potassium bisulfite and metabisulfite, sodium bisulfite and sulfite and metabisulfite.
  • To avoid polysorbate 80, I need to avoid: sorbitan monooleate, polysorbate 60, sorbitol, and sorbitan derivatives
  • FD&C Red #3 is another additive I need to avoid, and it also goes by the name erythrosine.
  • All of my dairy products have to be grass-fed. Cheddar cheese must be aged less than 6 months to avoid high tyramine.
  • If I decide to have oranges, they must be pulp free. That pretty much means I need 100% pulp free orange juice only, or I can use orange essential oil!
  • I will still be limiting soy products, as there is research that shows soy may not actually be good for you after all. (It can mess with hormones, and my hormones don’t need any more messing with!)
  • I should try to limit parsley and dill because parsley is high in nitrate and dill is “medium” in nitrate.
  • I can have sea salt, cane sugar, and baking soda.

What Can I Eat?

Proteins
  • Chicken
  • Codfish
  • Crab (not a big fan)
  • Pork (not a big fan)
  • Beef
  • Eggs
  • Pinto Beans
  • Sole (unsure if I’ve ever had it)
  • Catfish (unsure if I’ve ever had it)
  • Tilapia (unsure if I’ve ever had it)
  • Clam (only like in N.E. clam chowder)
  • Garbanzo Beans
  • Turkey
  • Tuna
  • Scallop (never had)
  • Salmon
  • Lamb (yuck!)
Starches
  • Sweet Potato
  • Kamut (unsure if ever had)
  • Quinoa
  • Rice
  • White Potato
  • Amaranth (grain) (unsure if ever had)
  • Buckwheat
  • Oat
  • Tapioca
  • Spelt
Vegetables
  • Broccoli
  • String Beans (yuck!)
  • Cucumber
  • Peas (only eat in things, never alone)
  • Zucchini (not a huge fan but it’s in my chicken broth)
  • Onion
  • Yellow Squash (yuck)
  • Mushrooms
  • Green Pepper
  • Cauliflower
Fruits
  • Pineapple
  • Honeydew Melon
  • Watermelon
  • Peach
  • Plum
  • Cherry
  • Blueberry
  • Cranberry
  • Orange (no pulp)
  • Strawberries
  • Apple
  • Apricot
  • Pear
  • Mango (no idea how to prepare)
  • Papaya (no idea how to prepare)
Dairy/Miscellaneous
  • Cocoa
  • Cheddar Cheese (aged less than 6 months)
  • Goat’s Milk (not a big fan)
  • Yogurt
  • Cottage Cheese (yuck! hate the texture)
  • American Cheese
  • Whey
Nuts/Seeds/Oils
  • Sesame
  • Olive
  • Sunflower Seed
  • Soybean
Flavor Enhancers
  • Vanilla
  • Cinnamon
  • Oregano
  • Lemon
  • Cane Sugar
  • Cayenne Pepper (don’t ever cook with this)
  • Carob
  • Basil
  • Honey (need to limit due to pollen issues)
  • Mustard Seed (not a huge fan)
  • Leek
  • Black Pepper
  • Cumin
  • Garlic
  • Mint
  • Maple
  • Coconut (need to not go too overboard because it’s very close to yellow)

Since my diet has been opened up a bit more, I won’t be doing the weekly roundups anymore. Instead, I’ll just post recipes (including those you have requested) that have worked out well for me. These won’t be on a regular schedule, because it depends on when things work out and when I can get pictures of them so I can write the posts.

Feel free to take a look back through my other LEAP diet posts and request any recipes you would like to see! I have a request for the tortillas (which I will probably get posted this week) and one for the sweet potato risotto (which will probably be posted sometime near the end of this week or early next week). Here are all my past LEAP diet posts:

If you have any good recipes using these things, please let me know below!

LEAP/MRT Diet Phase ½, Weeks 3-4

The reason I decided to combine weeks 3 and 4 is because I didn’t log much during week 4. I go a bit more into detail as to the reason why not in “The Case of the Missing Lizz;” but to summarize: I’ve started getting tension migraines. I had one tension migraine from the afternoon of Wednesday the 19th until I went to sleep Friday the 22nd. It was still hanging around in a milder form on Saturday. Since that first one, I have had one every single afternoon/evening until I go to sleep that night. It’s been pretty miserable and I’ve been forgetting to log because of that.

I still had the flu during week 3, so most of my log pages are full of medications. Luckily, I had mostly recovered before the week was out. Though, I did come down with oral thrush thanks to the strong antibiotics I was put on for my thumb infection. (More in Missing Lizz post.)



LEAP Diet Phase ½, Week 3: April 11 – 17

Tuesday, April 11
  • 11:30am: oatmeal with brown sugar
  • 2:15pm: rice cake with sunbutter (sunflower seed butter)
  • 6:30pm: chicken noodle soup; steamed broccoli
  • 9:30pm: edible cookie dough #2
  • Fluids: 122oz (3.61L)
chicken noodle soup signed

Chicken Noodle Soup

Wednesday, April 12
  • 11:30am: oatmeal with brown sugar
  • 2pm: rice cake with sunbutter
  • 6:30pm: taco bowls (homemade refried beans, brown rice, ground beef, mild cheddar)
  • 9pm: Siggi’s with blueberries (only a few bites thanks to being sick)
  • Fluids: 89oz (2.63L)
Thursday, April 13

I went to my PCP and got diagnosed with oral thrush

  • 12pm: blueberry muffins
  • 1:54pm: slice of cheddar cheese
  • 4pm: plain rice cake
  • 8pm: homemade tortilla chips; taco bowl
  • Fluids: 77oz (2.28L)
Friday, April 14
  • 11:45am: spoonful of sunbutter; some uncooked oats (2 handfuls)
  • 3:30pm: chicken noodle soup
  • 8pm: chicken with oregano, garlic, salt; steamed broccoli; sweet potato fries (fail)
  • 9pm: taco bowl
  • 10:45pm: edible cookie dough #2
  • Fluids: 89oz (2.63L)
Saturday, April 15
  • 11am: oatmeal with brown sugar
  • 2:30pm: chicken (canned chunk chicken, cumin, salt); pinto beans; cheddar cheese
  • 7pm: noodles (rice and quinoa noodles from Trader Joe’s); steamed broccoli; steamed sweet potato
  • Fluids: I completely lost track of my fluids by the end of the day
Sunday, April 16
  • 12pm: oatmeal with maple syrup and blueberries
  • 2:45pm: rice cake with sunbutter
  • 6pm: beef-n-noodles (Mom’s version of beef burgundy, very diff, but modified for my diet; served over the rice and quinoa noodles)
  • 8pm: cheese
  • 9:30pm: edible cookie dough #2
  • Fluids: 66oz (1.95L)
beef n noodles signed

Beef-N-Noodles

Monday, April 17
  • 9am: oatmeal with brown sugar
  • 12:30pm: beef-n-noodles
  • 6pm: plain rice cake
  • 7pm: chicken (garlic, oregano, salt); mashed cauliflower (coconut cream and oil, pepper, salt, garlic)
  • 8:40pm: cheddar cheese
  • Fluids: 76oz (2.25L) (I may not have recorded everything)

LEAP Diet Phase ½, Week 4: April 18 – 24

Tuesday, April 18
  • 9:45am: oatmeal with brown sugar
  • 12:30pm: rice cake with sunbutter
  • 4:30pm: homemade tortilla chips
  • 6:45pm: burritos (refried beans, ground beef, oat/rice tortillas, cheddar cheese)
  • 8:45pm: edible cookie dough #2
  • Fluids: 87.28oz (2.58L)
burritos soft tortillas signed

Burritos

Wednesday, April 19

I stopped logging my fluids, it was tedious. I figured that I have plenty of data to get an average, and as long as my body is hydrated then I’m doing alright.

  • 11:45am: oatmeal with brown sugar
  • 3:30pm: rice cake with sunbutter
  • 7:30pm: beef-n-noodles
Thursday, April 20
ER Night with emoticon

From my Instagram; In ER for tension migraine

I had a terrible tension migraine all day, so I only logged that I ate breakfast at 7:30am and it was oatmeal with brown sugar.

 

I ended up in the emergency room for the tension migraine at about 8:30pm, which is how I found out what was actually going on.

Friday, April 21

Still had a horrid tension migraine, and it was all I could do to keep myself alive (with food and medications and lying on the couch wanting to be able to temporarily remove my head).

Saturday, April 22

My headache was about 99% gone, but I didn’t want to be too stringent with things. I took today as a self-care day to make sure my headache wouldn’t come back!

Sunday, April 23
  • 10:30am: oatmeal with brown sugar
  • 1:10pm: slice of cheddar cheese
  • 3pm: plain rice cake
  • 4pm: sunbutter
  • 4:30pm: refried beans with cheddar cheese
  • 8pm: steak (onion, garlic, salt, pepper, oregano, basil); mashed sweet potato (coconut cream, ghee); steamed broccoli
steak and sweet potatoes signed

Steak and Mashed Sweet Potato

Monday, April 24
  • 8:45am: slice of cheddar; small spoon of the edible cookie dough (I was running late for an appointment)
  • 11:30am: ¼ cup of dry oats; 2 slices of cheddar (I was in the car on the way home from said appointment)
  • 5pm: leftover mashed sweet potato
  • 7pm: chicken (basil, oregano, salt); lentil noodles (discovered I’m allergic to lentils, wonderful)
  • 9pm: edible cookie dough #3


Before the end of week four, I emailed Kara (the dietitian) with a huge list of questions and concerns. Because of everything that I have had to be dealing with, Kara decided to make some changes to my diet. I will discuss these changes in a separate post, as this post has gone on quite long enough already!

As always, let me know what recipes you would like to see!


Other LEAP Diet Posts:

LEAP/MRT Diet: Phase 1/2, Week 2

I started my LEAP diet on March 28th. I am starting with a ½ phase due to my daily headaches; since sudden food detox can cause headaches in someone without chronic headache, my dietitian didn’t want me to feel atrocious. However, I’ve still been having some issues with phase ½, but it could also be due to my poor health. (This post has details about the diet.)

Right before starting the diet, I ended up with a pretty nasty virus and a sinus infection (see this post for details about being sick while chronically ill). I also got an infected hangnail (common for me) on my thumb that just wouldn’t heal, so I ended up on oral antibiotics. Then, since I went to urgent care for my thumb infection, I picked up another virus. When I went back to urgent care (Dan had to call them to make sure they had all the tools I needed, because he thought I looked like death), it was confirmed that I had picked up influenza B. First virus and sinus infection were confirmed March 23, thumb infection urgent care visit was April 6, started showing signs that I had a different infection April 7, and an urgent care visit confirmed the flu April 9. It’s been a really rough several weeks. Continue reading

LEAP/MRT Diet: Phase 1/2, Week 1

I started my LEAP diet March 28th, with my ½ phase. Unfortunately, I’ve also been struggling with some severe acute illnesses as well, so it’s been hard to tell how much the diet is changing things. I was feeling a bit better for a few days, but then I seem to have relapsed and gotten really sick. Hopefully, I’ll get over whatever this is soon, and then we can see what the diet is doing!

Since everyone seemed to enjoy my weekly FODMAP diet lists, I thought I would do the same thing for the LEAP diet! Since I’m so extremely restricted on what I can eat, I have to get creative with food. There has been a lot of “from scratch” cooking, a lot of substitutions, and a lot of frustration. I’ve lost several pounds, because I’m still working on trying to figure out snacks and other quick food, so I’m not eating as much as I should be. Hopefully, I’ll get more energy soon and can actually spend more time cooking.

Week one of phase ½, I was cooking the entire week. Every second of my free time was spent in the kitchen, which would be fine if it didn’t require so much energy. I’m completely exhausted, but hopefully I can get a better routine down. Continue reading

LEAP Results & My Program

After the low FODMAP diet didn’t work for me, my dietitian and I decided to move forward with the LEAP program. I explained the LEAP protocol in more detail in this post, but I’ll give another brief summary here. LEAP is technically the eating plan that is developed based on the food sensitivities that are found from the mediator release testing (MRT) conducted. Mediators are chemicals that are released by white blood cells – such as histamine, prostaglandins, and cytokines – in an immune system response. Mediators can cause a range of symptoms, including inflammation and pain. The LEAP 150 panel tests your blood against 150 different foods and chemicals, and checks for mediator release. Results are ranked numerically, and these numbers are converted into a great visual with different length, color-coded bars for each item tested. Bars are either green (non-reactive), yellow (reactive), or red (highly reactive). The yellow and red items, as stated in the booklet I was given with my results, are best to avoid completely. Yellow items can sometimes be dose dependent, so late in the program you can sometimes attempt to reintroduce them. However, that is for wayyyyy down the road, so right now we won’t talk about that.

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Asthma Storylines Health Tracking Application – Review

Disclaimer: For my honest review, I am being compensated through the Chronic Illness Bloggers group. Even though I’m receiving compensation for my review, all opinions of the product/service are accurate and reflect my true thoughts about the product/service. I was in no way influenced by the company or CIB.

I was selected to review the “Asthma Storylines” mobile application (for Android) by Health Storylines (link). For context, I was using this application on an LG G5 running Android Nougat (7.0). I used this app daily for one week prior to writing this review, and overall I’m quite impressed! Of course, there are a few things that could use some tweaking (like in every single application I’ve ever used, of any type), but it’s an impressive health tracking app!

Actually, I wasn’t just impressed, I was extremely happy. It’s a very thorough health tracking app, and definitely not just for asthma management – despite the name. There are several different tools to utilize, and the ones I used most extensively were: Symptoms, Medication Tracker, Routine Builder, and Daily Asthma Control. Since I fiddled with the rest of the app as well, my overall impression (at the bottom) takes the entire experience into consideration, not just these four tools. Continue reading