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 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

The Specialist Allergist/Immunologist

My specialist immunology appointment was Monday, January 23rd. In summary, I got the referral (it’s a referral only clinic) due to confusing allergy shots complications. I was thinking I probably had MCAS (mast cell activation syndrome/disorder), my gastroenterologist suspects I may have eosinophilia of the small bowel, and I really just want to know what’s going on and why I’m so itchy all the time. Thankfully, none of my unknown allergy attacks have actually resulted in anaphylaxis; I just get miserable.

Reaction to First Pollen Shot

My arm after an extremely low dose allergy shot.

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What Are Your Respirator Mask Recommendations?

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I’ve concluded I need a reusable respirator mask that I’ll wear more often.

The allergist that had been dealing with me (I’ve stopped seeing him for various reasons) told me to get an N95 mask to wear whenever I’m around airborne allergens – like when I’m cleaning, gardening, etc. He wasn’t entirely clear how often I was supposed to be wearing it, but it’s supposed to help reduce my permanent rhinitis and my eosinophilic esophagitis (EoE) symptoms.

My recent throat infection horribly flared up my EoE and made me realize I need something to reduce infections and filter allergens… on a regular basis. There was also a wildfire less than ten miles from my house, at the tale end of my infection, and it really brought the point home. My EoE is still completely flared up.

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Potential Silent Reflux

The last several weeks, I’ve been absolutely miserable with allergy symptoms: crazy amounts of phlegm in my nose/sinuses, crazy amounts of post-nasal drip, even more intense nausea than normal (probably from swallowing all the phlegm), extremely itchy skin, itchy eyes, itchy ears, itchy nose, etc. It’s been extremely painful actually.

So why all the symptoms? I just assumed it’s because EVERYTHING is blooming. There is so much cotton blowing around (from cottonwood trees) that it looks like there was a giant pillow fight somewhere; the cars have been yellow for weeks thanks to the amount of pollen in the air.

Pollen Death

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Empathy vs Sympathy by Brene Brown

This video is a very short and beautiful way of describing the difference between empathy and sympathy. Empathy is important and how we connect with people. Empathy is what everyone needs, what everyone wants. Learn empathy. Practice empathy. Foster connection. Foster love.

FINALLY a Recovery Cocktail

How do you recover from a month of crazy emotional stress, travel stress, chronic illness, and allergy testing?

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Zofran, Tramadol, two Benadryl, two Excedrin Extra Strength

I just got home from my allergy testing, and this is the first thing I did. Well, technically the second. This has just been the most ridiculous month, and definitely not in a good way. Grama passed on the 3rd, and now suddenly it’s the 19th. I do not know what exactly happened to the month of April, but I do know it has been a giant ball of stress of all kinds.

Here is why I’ve been a ball of stress: