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.

Continue reading

Advertisements

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.

Continue reading

It’s Almost Time to Get the LEAP Results!

My LEAP/MRT follow-up with the dietitian is on the 21st, so just 7 days now! While I’m really nervous about what I will be able to eat, I’m very excited because I think this will really help!

For an overview of LEAP/MRT, and why we are going that route, be sure to check out my More Dietitian Changes post!

Dan and I have definitely noticed that there are a few meals that make me feel quite ill, so we decided it would be fun to make some guesses. There are also foods that cause significant oral symptoms (itching, tongue rash, etc) and that seem to trigger my eosinophilic esophagitis (E0E). Obviously, Dan was only able to make his guesses based on the times I’ve told him something seems off. These guesses are just for if we think the foods will be “not green” (either yellow or red), not the degree to which they will be no good. Continue reading

World Rare Disease Day 2017: My Rare Illnesses and Condititions

World Rare Disease Day happens on the last day of February every year! Since this year is not a leap year, that means it’s February 28, 2017!

What is World Rare Disease Day?

World Rare Disease Day (or WRDD) is a day set aside for awareness about rare illnesses and conditions. I found out about it through the non-profit patient advocacy group, Global Genes. WRDD is a day of awareness, in the hopes of spreading the word about rare diseases and starting the conversation. There are approximately 7000 rare diseases (the list changes often due to conditions both leaving the list due to too many cases, and new diseases being discovered and classified), and an estimated 300 million people world wide have a rare condition. Some/Many of these rare illnesses are fatal, some are fatal in childhood. Rare illnesses all have one thing in common: not enough work is being done to find effective treatments! Sadly, when so few people have a condition, it’s extremely difficult to get researchers interested and even harder to get pharmaceutical (or medical tech) companies interested. This is why it’s important to care about rare! With more than 300 million of us impacted by rare conditions, we need research!

wrdd17_sm_imrare-1

What Rare Conditions Do I Have?

Though I have several invisible illnesses, only four (with a possible fifth) of them are considered rare based on the criteria for the Global Genes Rare Disease List, which essentially just means that there are fewer than 200,000 cases in the United States. My rare illnesses: Ehlers-Danlos syndrome (EDS), eosinophilic esophagitis (EoE) and possible enteritis, postural orthostatic tachycardia syndrome (POTS), and inappropriate sinus tachycardia (IST).

Yes, I did say EDS. Technically, I haven’t been diagnosed yet, as I’m waiting on my genetics appointment in August. However, I do have a diagnosis of joint hypermobility syndrome. There is a lot of research that says that joint hypermobility syndrome and EDS (specifically type 3) are the same. Based on everything I can find about EDS, I definitely have it. I just need to find out which type I have and rule out other conditions. So, for all intents and purposes, I have EDS.

Ehlers-Danlos Syndrome

EDS is a complex  condition. There are several types of EDS, and all of them have slightly different presentations. The common thread is that they are all caused by a defect in collagen or other connective tissues. Collagen is in literally every cell in your body. The cells that are most impacted by this lack of “proper” collagen, are the cells that determine your symptoms. For example: vascular EDS has a defect in the collagen of blood vessels, which leads to weak vessels and can lead to spontaneous organ rupture. EDS, all types, is something you are born with and will have your entire life.

Hypermobility type EDS, the type I most likely have, means that I mostly have a defect in the collagen and connective tissues that impacts my joints. This means that my joints are extremely unstable, and I’m “double jointed” in many areas. THERE IS NO SUCH THING AS DOUBLE JOINTED! I only used that phrase so you would understand what I was saying. My joints hyperextend, which means they extend past what is considered a “normal” range of motion. Some of my joints are far more impacted than others: some of my fingers, my elbows, my shoulders, my ribs, my vertebrae, and my hips. My knees used to be a major problem, along with my ankles, but those have both been helped dramatically by Pilates. However, it doesn’t just impact my joints. Unfortunately, all EDS types have systemic complications. Some of my IBS issues and my dysautonomia could both be caused or made worse by my EDS.

This slideshow requires JavaScript.

There is no cure for EDS, but there are therapies and treatments that can help with some of the symptoms. I do Pilates based physical therapy once a week, and I try to do weekly Pilates group classes under the supervision of my physical therapist when I’m well enough to do so. The gentle strengthening and stretching has helped dramatically in the stabilization of several of my joints. Unfortunately, this isn’t a perfect treatment (see these posts about what suddenly went wrong: 1, 2, 3), and I still have to deal with complications at times, but it’s been the most helpful things I’ve done to date. I’m also about to start hand therapy for my finger problems, and may need to get custom finger braces. The main “treatment” is bracing. I have braces for almost every joint, and I use them all pretty regularly. The braces are used on joints that are suddenly in pain and have become weak to help prevent over-fatigue and injury. However, you have to be careful with how often you use certain braces and which types of braces you use, as they can lead to muscle atrophy and a worsening of symptoms.

Postural Orthostatic Tachycardia Syndrome and Inappropriate Sinus Tachycardia

I have written a lot about POTS since I started this blog: My Struggle with POTSPOTS Things, How This New Potsie Survived the CO Renaissance FestivalWhat is POTS? A Short Video by DINew Cardiology Appointment, and October is Dysautonomia Awareness Month. You can get to all of my POTS posts by visiting my POTS category page.

I have written a bit less about IST, because I can’t actually tell if I have any different symptoms from the IST that aren’t from the POTS. My post New-ish Diagnoses explains a bit about IST.

Both POTS and IST are forms of dysautonomia. Oddly enough, it’s thought that POTS isn’t actually a rare condition, but is just rarely diagnosed. However, for now, it’s considered a rare condition which is why I’m including it! Both POTS and IST are primarily diagnosed by a marked increase in heart rate (tachycardia). POTS is an inappropriate increase in heart rate when you move from lying down to standing (more than 30 beat per minute increase, or heart rate going over 120 bpm when you stand). IST is associated with a heart rate of 100 bpm or higher when at rest, and a “mean 24-hour heart rate of 90 bpm” with no known cause (Source: Dysautonomia International). I am on the low end of the diagnostic criteria for IST, and don’t actually know what my 24-hour heart rate is. However, I definitely have postural tachycardia.

blood-pressure-monitor-1749577_1920

Being forms of dysautonomia, both conditions are systemic. Dysautonomia just means a malfunction of the autonomic nervous system, which is responsible for all the automatic functions in your body. My heart rate is profoundly impacted, but so are my blood pressure, temperature regulation, and digestion. Little things creep up all the time that can potentially be explained by the dysautonomia. This condition probably impacts my life far more than any other singular condition. Every single day, I have dysautonomia symptoms. It’s a massive struggle. Unfortunately, I may have these problems my entire life and my goal is simply to find ways to effectively minimize my symptoms. There are very few effective treatments, and it’s very much a guessing game as to what will work and what won’t. Hopefully, someday, I won’t struggle with it as much as I do now.

(Recently, I switched cardiologists and these two diagnoses are now under review. My new cardiologist isn’t so sure I was properly diagnosed the first time. He definitely agrees I have some form of dysautonomia, but we’re starting over testing to better determine what is going on. You can read more about this here: New Cardiology Appointment.)

Eosinophilic Esophagitis

Eosinophilic esophagitis, or EoE, was an exciting diagnosis. Not in the way that learning you’re going to your favorite amusement park is exciting, but it was a wild ride with very dramatic symptoms!

Eosinophils are a type of white blood cells. They help fight complex infections and play a role in both allergies and asthma. It is normal to have low levels of eosinophils in your blood when you are ill (especially if it’s with parasites) or if you have seasonal allergies. However, eosinophilic conditions go above that normal.

In EoE, there is a build-up of eosinophils in the tissue that lines your esophagus. When the eosinophils are activated, they cause swelling. Unfortunately, the eosinophils in EoE are extremely sensitive and are easy to trigger. This means that your esophagus will swell. Sometimes, the triggers are foods; sometimes, environmental allergens can trigger them. I have both trigger foods (though we are still trying to determine what they are) and trigger environmental allergens.

When the eosinophils get triggered, the esophagus (aka: food tube/pipe) will swell dramatically. Since it’s the esophagus swelling, you can still breathe, it just hurts due to the neighbor being swollen and irritated. (It’s important to note, with EoE the esophagus is almost always swollen as the eosinophils cause irritation.) This dramatic swelling can cause slow swallowing, pain, and food impaction (the food gets stuck). Food impaction is considered a medical emergency, and requires immediate medical intervention. It can get so bad that you can’t even swallow your own saliva. Food impaction is extremely painful, as your throat will continue to spasm in an attempt to pass the food, but it’s being held tight by the swelling and refuses to move. This dramatic swelling can cause a build up of scar tissue, which can eventually lead to an esophagus that won’t work. If your esophagus doesn’t work, you will end up on a feeding tube for the rest of your life. Therefore, people with EoE must be extremely careful to avoid their triggers in the hopes of preventing as many “episodes” as possible. Unfortunately, the triggers can change. Something what was safe one day, could suddenly not be safe moving forward. It’s very scary.

For me, it started several years before I got diagnosed. I would occasionally have trouble swallowing. I thought I was just eating too fast and not chewing thoroughly. Then, I ended in the ER and got referred to a gastroenterologist. Normally, if food would get stuck, I’d have Dan hit my back until the food dislodged and I could swallow it or I would vomit. The episodes were getting more frequent, and I was worried about what that could mean. Then, I was out eating with Dan, my mother-in-law, and my brother-in-law. Food stuck in my throat, and I couldn’t get it to dislodge. I was running from the table, where I would have Dan pound on my back for a bit, to the bathroom to hopefully throw up (and spit out my saliva). It wasn’t working, and it started to get difficult to breathe. I assumed that peanut butter had somehow ended up in my milkshake (the place did offer peanut butter shakes) and that I was having an allergic reaction. I didn’t have Epi-pens at the time, so I took two Benadryl and chewed them. Chewed up Benadryl stings and tastes atrocious! It wasn’t working, and I told Dan we had to go to the ER immediately. (I started vomiting the Bendaryl as soon as we got outside, and then started getting cursed at by some people who must have assumed I was drunk as it was the 5th of July. We ignored them.) Luckily, we were in Casper, WY and no where in town is more than 10 minutes from the ER (we were only about 5 minutes away). My O2 stats were just fine, so they realized it wasn’t an allergic reaction. They discovered it was a food impaction (or determined somehow, it’s a little blurry), and a young doctor knew of a new way to remove the impaction without a scope. They gave me a drug cocktail of morphine, nitroglycerin, and glucagon. The cocktail worked, and my esophagus opened back up and I was finally able to swallow. My throat hurt, horribly, and I got horribly ill from the medications. (As I’ve now discovered, I do not react well to either morphine nor nitroglycerin.) We went to the grocery store and bought some applesauce and pudding cups, because I was told to avoid solid foods for a while.

hospital-1636334_1920

After that incident, I set up an appointment with a gastroenterologist at home (not in Wyoming). The gastroenterologist performed an upper endoscopy and confirmed EoE. We trialed a few different drugs, but now we have found something that works. Unfortunately, I recently got a throat infection that made my EoE act up. It does not appear that my EoE will go back down to the baseline it was before the infection, so I may be stuck with a higher dose of my medication for the rest of my life. The throat infection spurred me to buy two reusable respirators to help prevent me from getting ill and to prevent me from inhaling as many allergens when I’m out and about. They definitely help!

Eosinophilic Enteritis

This is eosinophilia of the small intestine. Technically, it also goes by the abbreviation of EoE or EE, but for the purposes of this article I will use the acronym ESI. This is not a firm diagnosis yet, but it is strongly suspected. You can read more about what my gastroenterologist thinks in this post: Gastric Emptying Study Follow-Up.

ESI behaves much the same way as EoE, but in a different location. The swelling happens in the small intestine, and can cause food to pass slowly. This can cause delayed gastric emptying, bloating, painful stomach distension, and constipation. We’ve ruled out most things that could be causing my GI symptoms, so my gastroenterologist suspects I may have ESI. It’s extremely rare, but it’s one of the only things he has left that could describe my symptoms. Hopefully, the LEAP testing I’m doing will help manage it.

If the LEAP testing isn’t as successful as we hope it will be, my gastroenterologist wants to do another upper endoscopy, but with a scope that is longer and can get further into my small intestine. Even if he doesn’t find concentrated eosinophils in the first few feet of my small intestine, I could still have ESI. You see, you can have eosinophilic conditions in just a few areas of an organ, so he could miss the patch of eosinophils. But I think I’d be willing to risk it to possibly get more answers.

Hopefully, we can identify several of my triggers via the LEAP testing, and get a better handle on both my EoE and ESI.


wrdd17-square-profile

Please feel free to ask me questions about any of these conditions! I will answer what I can, and can direct you to research and organizations that may be able to better answer your questions! Let’s get the discussion going!

Also, don’t forget to wear denim Feb. 28th to show that you Care About Rare! (Global Genes, get it?)



Global Genes Images available here

FODMAP Diet – Week 5 Roundup

This was likely my last full week on the low FODMAP diet, as I see Kara (the dietitian) again on Tuesday, February 7th. I had forgotten to log the days I felt bloating and other symptoms like that, but they haven’t decreased at all on this diet. Most days, I am still extremely bloated in the evening. This entire last week, I felt incredibly overfull and was having to force myself to eat on my meal schedule (every 2-3 hours). I’ve been having a lot of nausea, and have taken at least one Zofran every day. To top it all off, my eosinophilic esophagitis is acting up, but I think that’s due to the new nasal spray the immunologist gave me (if it continues for another week, I’ll be emailing them to let them know I’ll be discontinuing it).

I’m really not feeling any better on this diet, my symptoms haven’t improved, and I’m fatigued/overwhelmed by the restrictions and inability to eat out and need to carry a cooler with me everywhere I go. I’m almost positive, now, that my GI was right and that my symptoms are being caused by eosinophilic enteritis… or that they’re at least food allergy/sensitivity related. (No, I am not gluten sensitive. I have been tested several times, and every time I eliminate gluten I get sicker.)

Continue reading