Where are you on your autoimmune journey?

There are many personal stages in processing and healing with autoimmune disease. It often starts with mysterious symptoms, leading to years of searching for a diagnosis, and then the relief and grief that comes with managing an autoimmune disease.

Something I hear time and time again is that one of the toughest parts of living with chronic illness is the unpredictability. One moment you feel unstoppable and the next you are beyond exhausted in bed, not sure where you went “wrong.” I know that I can get into that mindset of dissecting every little thing, but please remember that you didn’t do this to yourself.

Autoimmune disease flare-ups are often out of our control (stress and life happens), but through time, the ultimate goal is to learn how to listen to your body, understanding what work for you to bring your body back into balance.

What are some of the common stages of the autoimmune journey?

Stage 1: What is wrong with me?

For years before being diagnosed with Hashimoto’s, UCTD, and EoE, I experienced a lot of mysterious symptoms like constant lightheadedness, migraines, chronic fatigue, anxiety, new food allergies and sensitivities, without any answers. It was really tough being in my twenties, feeling like something was wrong but doctors couldn’t figure it out. I had EKGs and lots of bloodwork performed but everything came back normal. I am sure this sounds familiar to so many of us.

The “what is wrong with me” stage is long and arduous. You might even start to question if what you are feeling is actually real but trust me—you know your own body better than anyone else. Please keep searching for answers. There are doctors out there who will listen, take you seriously, and really keep digging until they figure it out.

Stage 2: Diagnosis – Relief & Grief

Now, you finally have a diagnosis that explains your mysterious symptoms. First, you might feel a sense of relief. You now have a name for what is going on with your body and a diagnosis is in your medical chart. Next, comes the grief of having that diagnosis. This can be a very emotional stage and that is normal and perfectly okay. Take your time to feel all of the emotions. It has been a hard journey to get to this point.

Stage 3: What do I do now?

With more answers and a diagnosis, you feel ready to figure out next steps. I know for me this meant lots of time on Google, learning all I could about my autoimmune conditions. This step can feel overwhelming—trying to become an expert on your new diagnosis, learning the treatment options, and determining if making changes to your diet and lifestyle will work for you. Plus, there can be so much conflicting information out there you have no idea where to even start You might even join a Facebook support group or turn to other social media to connect with others who can relate to what you are going through.

It is okay to feel overwhelmed. This is an emotional time. If possible, try to take a step away from all of the research once in awhile and do the things that bring you the most joy—taking a walk in the park, drinking a cup of your favorite tea, playing with your dog, or spending time with friends. Finding support during this time can be really helpful.

Stage 4: The Ups and Downs of Autoimmune Disease

When you are ready to take charge , it can feel empowering. Whether that is through medication, diet, lifestyle, or all of the above. Learning to be your own advocate and learning to listen to your own body is one of the most important steps in managing an autoimmune disease.

The autoimmune journey isn’t linear but you are always moving forward. Flare-ups are often inevitable and it can feel frustrating when you finally feel like you are getting symptoms under control and then an unexpected stressful event happens. It is totally okay to feel frustrated—taking two steps forward and one step back is normal. But try to remember, healing is a process and there will be ups and downs but your are always learning how to best support your body.

Stage 5: Having the tools to live well with chronic illness

We all have our own unique needs and ways of living with autoimmune disease and chronic illness. But through time and learning to listen to your body, it gets easier. Not because there aren’t any ups and downs—the unpredictability of autoimmune disease is one of the hardest parts about living with a chronic condition. Stress happens, flare-ups happen, but being able to listen to your body is something that we can learn to do with experience.

Having the tools that work for you, whether that is getting extra sleep and rest, focusing on including more nutrient-dense foods, taking some deep breaths, or even spending more time doing the things that bring you joy, are ways to help support your body back into balance.

It’s a marathon, not a race

While the saying might be a bit cliché, it rings very true when living with chronic illness. As a Nutritional Therapy Practitioner (NTP) who lives with multiple chronic illnesses, I have experienced the ups and down and known the unpredictability very well. I know first hand how important it is to pace yourself even when you feel discouraged. Learning to manage autoimmune disease is a lifelong process and it takes time to feel confident and empowered.

I would love to connect with you and learn where you are on your autoimmune journey

The post Stages of the Autoimmune Journey appeared first on The Open Cookbook.

Have you ever wondered how to provide better support to a friend or family member living with food allergies, becoming a true food allergy ally?

Unfortunately when living with food allergies, it is very common to encounter people who make assumptions about what it is like to live with food allergies without actually understanding the complicated reality. In fact, people often forget that food allergies are a serious medical condition and something not to joke about.

As someone who lives with EoE, a gluten sensitivity, a shellfish allergy, and multiple autoimmune diseases, I know firsthand how frustrating it can be when people make assumptions about your dietary restrictions.

What is an ally?

A food allergy ally is someone who takes the time to listen, learn, and advocate. While I don’t expect people who don’t have food allergies to “get it,” I do hope non-allergic people can take a step back and really listen to the range of experiences of individuals and their families who live with food allergies. There are a lot of preconceived notions that simply aren’t true and making unfounded assumptions can be not only emotionally hurtful but might even place someone in a potentially unsafe situation.

1. Food allergies aren’t a fad diet

This point is really important to remember. Food allergies, EoE, Celiac or other autoimmune diseases are serious medical conditions⁠—having to strictly avoid certain foods is not a choice. Avoiding specific foods is medically necessary and definitely NOT part of a “fad diet” to lose weight or “get healthy.” In reality, dietary restrictions do not equate to health. Instead, when living with food allergies, it is especially important to be mindful about eating a diverse diet to prevent potential nutrient deficiencies.

I once had someone tell me, “I wish I had food allergies! That would be such a blessing so I could lose some weight.” This comment is incredibly shortsighted (I was fuming!) and really highlights how little people understand about the seriousness of food allergies.

>> INSTEAD OF SAYING: “I wish I had allergies! You must be so healthy. If I had food allergies, I could lose weight.”

>> TRY THIS: “It must be so hard thinking about food 24/7. I can’t even imagine the amount of planning it must take.”

2. Having food allergies doesn’t mean living with deprivation

There is a misconception among some non-allergic people that if you have food allergies you live a very deprived life. While yes we might have to avoid specific foods and be extra cautious when dining out, that doesn’t mean we are hermits.

Hearing someone say “how do you even live without eating ‘fill in your allergen’ ” or that “they would rather die” than not be able to eat a specific food, is not only frustrating and overly dramatic, but potentially triggering for people with food allergies who might actually have life-threatening allergies to that specific food! Trust me—we much rather be alive than eat our food allergen.

>> INSTEAD OF SAYING: “How do you live without eating ____________? I would rather die than not be able to eat that food.”

>> TRY THIS: “I can’t even imagine the daily challenges you experience. Let me know how I can best support you.”

3. Allergy-friendly food can be delicious and safe

There is nothing more annoying than when non-allergic people hear “gluten-free” or “vegan” and immediately say they could never eat that way and that your food must taste like “cardboard” without even trying it. These negative assumptions about allergy-friendly food can’t be farther from the truth.

In reality, the food I eat is more interesting, diverse, and creative since my EoE diagnosis. Pre-EoE I never tried cassava or tigernut flour, delicious plantains were not on my radar, and it never occurred to me that you can make noodles out of daikon. Before making assumptions that allergy-friendly and gluten-free food is gross and tasteless, keep an open mind and give it a try.

>> INSTEAD OF SAYING: “Allergen-free food tastes like cardboard. It is so gross! I would never be able to eat that.”

>> TRY THIS: “Wow, those ingredients sounds so interesting! I would love to learn more about your favorite safe foods and give them a try sometime.”

4. Food allergies are individual

Remember this very important point—just because your friend with food allergies can eat a specific food, does not mean it is safe for someone else with the same food allergy. Everyone has their own comfort level to what they feel safe eating. Please don’t push food on someone who says “no thank you.” They definitely have a very good reason for turning it down.

>> INSTEAD OF SAYING: “My friend has the same food allergy as you and eats this all the time. You will be fine – don’t worry so much.”

>> TRY THIS: “I want to make sure you feel comfortable. Let’s find food that is safe for you.”

5. Food allergies = chronic health condition

After I was first diagnosed with EoE, a lot of people would tell me that “maybe I will outgrow my reactions” and that I would probably be able to eat that food again one day. While I realize this comment comes from a good place of trying to make people feel better and give some hope, it doesn’t help. In fact, these comments would make me so angry! It felt like people were dismissing my new reality of living with extensive food triggers. I wasn’t at a point of thinking about whether my EoE triggers might change one day. Instead, I was just trying to get through each day and figure out what foods were actually causing me the most pain.

Please remember that food allergies, EoE, and Celiac disease are chronic health conditions. Instead of asking if someone might outgrow their food allergies, just learn to listen to what their current challenges are so you can support them and be a better ally.

>> INSTEAD OF SAYING: “Do you think you will outgrow your food allergies?”

>> TRY THIS: “I’d love to learn more about your food allergies so I can better support you.”

The post 5 Ways to be a Food Allergy Ally appeared first on The Open Cookbook.

When starting out on any healing protocol such as the Autoimmune Protocol (AIP), we often focus on food first. For many people, lifestyle changes, including environmental toxins, typically come later.

Let’s be honest—updating our lifestyles can be overwhelming. In many ways, lifestyle changes are much harder to control and implement compared to dietary changes. However, it is important to remember that food is only one piece of the healing puzzle. Updates to our lifestyle, including our personal environment, are equally important to consider to lessen the load on our bodies, also known as our “stress bucket.”

Reducing our “stress bucket”

What exactly is our “stress bucket“? The “stress bucket” is a metaphor for describing the impact acute and chronic stress has on our wellbeing. It can include stressors such as physical and emotional stress, lack of sleep, inadequate hydration, inflammatory foods, food sensitivities, over exercising or lack of movement, and environmental toxins. When faced with chronic illness such as autoimmune disease, reducing our body’s “stress bucket” is key to lowering inflammation and supporting our immune systems.

While it is important to focus on including therapeutic foods, we should also remember that our environment plays an important role in the long-term stress on our bodies. Try not to feel too overwhelmed (and stressed!) when investigating the range of environmental toxins that are in the modern world. Instead, focus on what you can change, start small and at a manageable scale that works for you. And remember—the body already has its own built-in detoxification system including your liver, kidneys, lungs, skin, gastrointestinal tract, and lymphatic system, that will help you navigate whatever toxins are thrown your way.

Let’s start in the kitchen

When addressing your personal environmental toxin load, I think one of the best places to start is the kitchen—a place where you probably have a bit more control. I suspect you are spending more time than ever in your kitchen, getting comfortable and making meals from scratch. So, how can you support your body even more, beyond the nourishing meals you are already preparing?

Let’s take a look at five easy steps to help minimize environmental toxins in your kitchen.

1. Use fragrance- & dye-free dish and hand soap

One of the easiest first steps to take is to look at the ingredients in your dish and hand soap. Unfortunately, many detergent soaps contain harsh chemicals that might work well at cleaning your pots and pans but are very irritating or even toxic to the human body and can be absorbed through the skin.

Two big flags to look out for when selecting dish and/or hand soap is avoiding any product that uses “fragrance” and/or “dye”. The specific ingredients in “fragrance,” “natural fragrance,” and “organic fragrance” do not have to be disclosed by the manufacturer or supplier in the United States according to the Food & Drug Administration (FDA) and therefore may contain any number of added unknown chemicals, including volatile organic compounds (VOCs). In fact, “fragrance” is known to trigger asthma/allergies and migraines, may be an endocrine disruptor, and has even been linked to cancer.

Avoiding artificial “dye” is another important step to selecting a safer soap product. Three of the most commonly used artificial food coloring dyes (Red 40, Yellow 5, and Yellow 6) contain the carcinogen benzidine, and in a 2007 study, artificial food additives and coloring was linked to hyperactivity and ADHD in young children.

>> Recommendations:

• Check out the Think Dirty app and EWG’s Skin Deep for in-depth search tools. These two resources are my go-to for researching personal care products.
• My favorite fragrance-free dish and hand soaps:
  • Seventh Generation Dish Soap – Free & Clear
  • ECOS Dish Soap – Free & Clear
  • Seventh Generation Hand Soap – Free & Clear
  • ECOS Pro Hand Soap – Free & Clear
  • Method Hand Wash – Free & Clear

2. Replace aluminum foil with parchment paper

While very small amounts of aluminum are naturally found in food, it is best to try to avoid consuming high-levels of aluminum since it is a neurotoxin. Studies have shown that increased levels of aluminum might be linked to autism and potentially Alzheimer’s disease (levels of aluminum increase in the human brain as we age, though the connection to dementia is still unclear).

One simple way to help reduce aluminum intake is to make a simple swap of aluminum foil for unbleached parchment paper. Bonus—baking with parchment paper saves so much time, reducing clean-up, and I promise you won’t ever look back.

3. Swap out plastic for glass food storage containers

When you start cooking most of your food at home, meal prep becomes a big part of your life and how you store food becomes pretty important. Plastic food storage containers are very common but unfortunately they may contain harmful chemicals that can leach into food, such as polycarbonate (plastic #7) that releases Bisphenol A (BPA), a known endocrine/neuroendocrine disruptor that may contribute to infertility and a range of metabolic disorders such as PCOS.

If your budget allows, consider swapping plastic storage containers for glass food storage containers with snap-on lids or mason jars. These glass containers are perfect for saving space in your fridge, can be used in the freezer, and they are BPA-free.

If you are unable to make the swap from plastic to glass, there are some ways to minimize your risk to BPA exposure—be sure to never microwave your food in the plastic container and try gentle handwashing instead of using the dishwasher.

4. Rethink your cookware

Approved by the FDA in 1960, non-stick pots and pans have become a favorite in many households. Non-stick pots and pans (sometimes referred to as Teflon) consists of a polytetrafluoroethylene (PTFE) coating on top of an aluminum base. When exposed to high-heat, PTFE can release toxic fumes known as ‘polymer fume fever’ with symptoms like fever, sore throat, and coughing .

In addition, perfluorooctanoic acid (PFOAs) is often used in the manufacturing process of PTFEs and might still remain in the non-stick coating. PFOAs, also known as “forever chemicals,” have been linked to infertility, thyroid disorders, chronic kidney and liver disease, as well as some forms of cancer.

As you begin to reassess your kitchen, what are some safer non-toxic cookware materials to consider instead?

• Cast iron
• Stainless steel
• Ceramic or ceramic-coated
• Glass
• Silicone

For more information, I recommend checking out Phoebe Lapine’s resource of her favorite non-toxic non-stick cookware.

While transitioning away from using non-stick cookware is an important step to take, it can definitely be a multi-staged process due to space constraints as well as personal budget. Pots and pans aren’t cheap so take your time in making the switch.

In the meantime, there are some steps you can take in the meantime to reduce toxin exposure with non-stick cookware:

• Avoid cooking on high-heat
• Never preheat an empty pan
• Use wooden or silicone cooking utensils to prevent scratching
• Try to avoid stacking the pans or use paper towels or a soft fabric between each pan
• Gently hand wash with a soft sponge
• Replace if there are any scratches, chipping, or peeling

5. Filter your drinking water

Finally, water. One of the most important, if not the most important, nutrient for the human body and a top priority to research when reducing daily environmental toxins. Some of the most common toxins found in the water supply include aluminum, arsenic, chlorine, fluoride, heavy metals, PCBs, pesticides, and prescription and over-the-counter medication residue.

One of the first steps when considering your drinking water is to start with a little research about your water source. Did you know that the Environmental Working Group (EWG) has an amazing search tool called the EWG Tap Water Database that you can use for free to research the details of your municipal tap water? The database collects information about what types of contaminants can be found in your zip code’s tap water and even provides suggestions for what type of filtration system to consider based on the specific contaminants.

For multiple reasons, switching to filtered water turned out to be the hardest step for me to take. While I always understood the importance of drinking filtered water, I kept on reading about how great New York City’s tap water is and since I didn’t mind the taste, I just went with it. However, I finally decided to invest in a high-quality water filtration system (after much research on water filtration types) and it has definitely been one of the best investments I have made towards my health.

I highly recommend the Berkey Water Filters since it is a bit more budget-friendly (I purchased the Travel Berkey – perfect for 1-2 people) compared to other high-quality options that are available. Click here to review Berkey’s filter specs.

I hope this list of 5 simple ways to minimize the environmental toxins in your kitchen is useful for you to consider as you take the next steps in your healing journey. It took me many years to implement these modifications due to budget and space constraints, so please don’t feel like you need to address everything all at once. Instead, prioritize what fits within your own budget and what you are most interested in tackling at this time.

>> Let’s chat about toxins:

• Are there any specific environmental toxins that you have encountered in your daily life that have directly impacted your health?
• Are there any updates to your kitchen that have helped you move forward in your healing?

The post 5 Easy Steps to Minimize Toxins in the Kitchen appeared first on The Open Cookbook.

Over the past few years, bone broth has been hailed as a key way to balance the body by reducing inflammation, fighting off colds, and healing leaky gut. Steeped in a rich history with thousands of years in culinary tradition, bone broth has been used for supporting digestive and immune health throughout the world, including Traditional Chinese Medicine.

While bone broth is an amazing tool to support the body through healing, it might not be the best initial step for everyone—especially when first starting out on a gut-healing protocol. Meat stock, a main staple of the GAPS Diet, also has many benefits in supporting overall health, especially when faced with inflammatory digestive disorders such as Crohn’s and Ulcerative Colitis, IBS, SIBO, food/chemical allergies, and histamine intolerance.

Per the GAPS protocol developed by Dr. Natasha Campbell-McBride, meat stock can be used as a first step, sealing and healing the gut, before adding in bone broth as a final step. Let’s learn more about the differences between bone broth and meat stock, helping you decide what works best for you.

Bone Broth vs. Meat Stock

Bone broth and meat stock are known for their gut-healing and soothing qualities. Bone broth primarily uses a mix of bones and joints to make the broth, while meat stock uses gelatinous meat and meaty bones. A variety of vegetables and herbs, such as celery, carrots, and parsley can be included for depth of flavor.

One of the key differences between bone broth and meat stock is the actual cooking time. Due to the shorter cooking time of meat stock (1 to 4 hours) compared to bone broth (12 to 24 hours), meat stock in much lower in histamine and glutamine compared to traditional bone broth. Histamine and glutamine can be potential triggers for someone experiencing histamine intolerance, SIBO, MSG sensitivity, and a range of conditions associated with leaky gut.

What about the nutrients?

Bone broth and meat stock are both rich sources of collagen and gelatin (a cooked form of collagen). Collagen and gelatin include the amino acids glycine and proline. These amino acids, along with vitamin C, are necessary to support collagen formation in the body. Plus, they help strengthen and repair connective tissue, a beneficial first step when healing leaky gut.

While meat stock is an excellent source of gelatin, bone broth has a more complete protein profile, providing higher amounts of a full range of amino acids. However, the higher levels of amino acids can make bone broth more complex to digest when first starting a gut-healing protocol. Instead, meat stock can be used which is gentler and easier on the digestive system.

Interestingly, while we often think bone broth is a rich source of minerals, studies have shown that it actually isn’t a mineral-rich food source despite using bones which are inherently rich in calcium and other minerals. In fact, as Jenny McGruther, NTP of Nourished Kitchen points out, the low levels of minerals that are found in bone broth might actually be coming from the vegetables that are added to the broth, rather than from the bones themselves.

What if I have SIBO?

With SIBO, meat stock and bone broth becomes a bit more complicated. Since bone broth traditionally uses bones with cartilage, this can release polysaccharides (specifically glycosaminoglycans/GAGS) into the broth. Polysaccharides may be problematic for individuals with SIBO since they can feed the bacteria in the small intestine. To reduce the amount of polysaccharides in meat stock or bone broth, try using boneless chicken/turkey breast and thighs or marrow bones, cooked for no more than a couple of hours.

Where do I begin?

While bone broth and meat stock are both excellent sources of gelatin and collagen, they might have their own time and place depending on where you are with healing leaky gut. According to the GAPS protocol, since bone broth is high in histamine and glutamine, it is best to start with meat stock to heal and seal the gut before moving on to bone broth. If you find that you are experiencing an increase in symptoms or reactions with bone broth, it might be worth giving meat stock a try.

Bone Broth & Meat Stock Recipes

Bumblebee Apothecary, Meat Stock – Gaps Diet

GAPS Diet Australia, Beef Meat Stock

Sisters Undercover, Chicken Meat Stock for SIBO

Nourished Kitchen, Bone Broth (so much fantastic info!)

Broth & Stock by Jenny McGruther, NTP

The post Gut-Healing: Bone Broth vs Meat Stock appeared first on The Open Cookbook.

If you live with food allergies, celiac disease, EoE, or follow AIP (Autoimmune Protocol), you probably have experienced some level of anxiety before traveling.

It can be a very stressful experience to leave the safety of your own kitchen when you have strict dietary requirements, never knowing if you will have access to your safe food. To be honest, I experience some level of food-related anxiety anytime I leave my apartment, even if it is just for a few hours!

Before being diagnosed with EoE, I never understood the numerous obstacles that go into planning vacations or even simple day-trips when living with a restricted diet. Previously, food was always a main highlight of every trip but now that I must follow a restrictive diet due to my EoE triggers, travel looks very different and I am learning to adjust.

I’ll never forget my first few trips traveling post-EoE diagnosis and the overwhelming fear of not bringing enough food with me. My heart would be racing for weeks, constantly brainstorming the number of meals that I would need to bring. At this point, my suitcase is mostly filled with food vs. clothing!

While I am still figuring out how to travel with EoE and dietary restrictions, through trial and error, I have picked up a few things that have helped me along the way. I hope these tips help you gain confidence and find joy in traveling again.

Research, Research & More Research

Step one is to start researching everything you can about your trip destination in advance. Note: these tips are for domestic travel—I haven’t taken an international trip yet with EoE and I am sure there are a lot of other things to consider.

First, I like to start with finding accommodations that have an in-room microwave/mini-fridge or for a longer trip, I will book an Airbnb with a kitchen. Once I narrow down some potential hotel or Airbnb options, I make sure they are located near an organic grocery store or Whole Foods, in case I need any extra safe snacks or ingredients. Finally, I love to learn more about local restaurants, searching for allergy-friendly and/or gluten-free restaurants.

With food allergies or intolerances, researching in advance becomes even more of a priority. Luckily, we are a very resourceful crew and already have top notch planning skills!

>> Research Tips:

• Hotel with microwave/fridge or Airbnb with kitchen
• Location of grocery stores (ideally close to your hotel or Airbnb)
• Allergy-friendly restaurants—some great search tools:
  • Spokin
  • Find Me Gluten-Free
  • Allergy Eats

Contact Restaurants In Advance

When I was first diagnosed with EoE, I was really nervous about reaching out directly to restaurants to find out if they could safely accommodate my food restrictions. Through time, I have discovered that reaching out via email is an amazing way to confirm if a restaurant can accommodate me. Plus, I love having it all in writing!

After researching allergy-friendly restaurants, I’ll create a list of top potential contenders. A couple of weeks before leaving, I will reach out to the restaurants via email and ask if they would be able to work with me to accommodate my food allergies.

I love email because I can send them a list of my safe foods so there is nothing lost in translation. If I feel in anyway uncomfortable with the menu options that they provide me, I will be very direct and ask if they can make me something specific (such as a simple steak and steamed vegetables) and see if that is another possibility.

Typically, restaurants have been very responsive and are happy to accommodate. If a restaurant can’t accommodate my food allergies, I always appreciate their honesty. In this situation, I ask the restaurant if it is okay for me to bring my own safe meal and I have never encountered a restaurant that said no.

Carry a food allergy chef card

Having a food allergy chef card on hand is an important tool to make sure there isn’t any miscommunication with the restaurant’s kitchen. I will admit, I don’t have a chef card since uncovering my EoE triggers is still a work in progress. However, I highly recommend having a chef card if this works for you.

Invest in an easy to carry insulated bag

Investing in an insulated bag is key for traveling with food allergies. I use mine all the time, even for day trips, keeping my meals cold and safe while I am away from a fridge. I just pack up my food with some ice packs and I am ready to go!

My favorite insulated lunch bag actually has two different compartments. It is perfect for storing chilled food in one compartment and snacks and a banana in another.

A fridge & microwave are your new best friends

Finding accommodations with a fridge and microwave or a full kitchen is really key to reducing stress while traveling with food allergies or on AIP.

Before booking a hotel, I always call to confirm if a mini-fridge and microwave can be provided in my room due to food allergies. Typically, most hotels can accommodate this request but sometimes they aren’t able to provide a microwave. In fact, once a hotel suggeted that I walk a few blocks away to Target and use their microwave (um, no thanks).

Luckily, there is an amazing mini portable personal oven called HotLogic. All you need is an outlet to heat up your food. This mini-oven is a definite life-saver and I highly-recommend giving it a try on your next trip if a microwave is not available.

If I am traveling for more than a couple of nights, I make sure to book an Airbnb instead of a hotel since a kitchen will be necessary. This way, I don’t have to stress as much about bringing as many fully-prepared meals and can go grocery shopping when I arrive at my destination.

Packing some kitchen basics

This is something that can be easily overlooked or forgotten but bringing your own kitchen basics is key, especially if you have food allergies and avoiding cross-contact is a priority. I always make sure to pack my own utensils, microwave-safe glass containers, a clean sponge, and dishwashing soap.

Pack easy AIP / allergy-friendly snacks

A couple of weeks before leaving, I make sure that I have enough safe snacks for the trip. I love sourcing some easy to pack snacks that I can toss in my bag. In addition to pre-packaged snacks, I loving making a batch of AIP / Top 8 Free cookies or muffins to last a trip since they are perfect for when I am on-to-go.

>> Allergy-Friendly Snack Ideas:

• Plantain Chips
• Pre-packaged Green Olives
• Chomps (sea salt beef sticks)
• Cassava Chips
• Lovebird Cereal
• Freeze-dried blueberries
• Butternut Squash Scallion Muffins
• Green Banana Flour Chocolate Chip Cookies
• Crispy Coconut Tigernut Cookies

Prep & freeze safe meals

A few days before leaving for a trip, I start my meal prep and focus on meals that will be easy to transport. Soup, meat patties, and easy skillet meals are some of my go-to recipes that are filling and versatile. I also focus on meals that freeze well if I am going to be away for a couple of days or more. That way, I don’t worry about food spoiling on my journey.

It is okay to overprepare (do what is best for you)

Finally, it is completely normal to feel anxiety before traveling when managing food allergies or special dietary requirements. Being away from the safety of your own kitchen can be a scary experience but it definitely gets easier with time.

We all manage anxiety in different ways. For me, I feel best when I am overprepared. While I sometimes feel ridiculous carrying a suitcase full of my safe food, this helps keep my mental health in check. Being overprepared allows for me to switch my focus to the present and enjoy all that travel has to offer.

>> Additional AIP & Food Allergy Travel Resources

• Phoenix Helix: Paleo AIP Travel Series
• Unbound Wellness: Paleo & AIP Travel Food Guide
• Trusted Travel Girl: Tips for Traveling with Food Allergies
• Zestfull: How to Cook in a Hotel Room

The post Staying Safe: Traveling on AIP or with Food Allergies appeared first on The Open Cookbook.

Thank you to Melissa for sharing her story about growing up wth EoE and being so open about her experiences of living abroad in Italy.

Melissa’s EoE Story

I am 27 years old and I live in Connecticut with my husband, Nathan. I grew up in Connecticut, but after getting married in 2016, I moved to Aviano, Italy where my husband was stationed with the US Air Force. We lived there until March of 2020, and we are so thankful that we were able to move back when we did, as the pandemic would have kept us locked down in Italy for a long time more. I currently work as an administrative specialist at a nonprofit organization called The Connection Inc. Some of my favorite things to do are bake and try new recipes with healthy ingredients, plan and host parties and events, traveling and I have been enjoying weight lifting (although I’m not the best at it haha) because it makes me feel strong.

When were you diagnosed with EoE?

I was officially diagnosed with EoE when I was 11 years old, although I had demonstrated symptoms since I was very young, even before 5 years old.

How long did it take to receive a diagnosis?

If I count starting at 5 years old, it took about 6 years. Thanks to my mother for realizing that something was wrong when I was coughing so much while eating as a child.

What was it like having EoE growing up?

Until my actual diagnosis of EoE, I was diagnosed with asthma, which now as an adult I am learning is EoE induced asthma. Growing up, I was always trying new medication or going to new doctors and it just seemed annoying as a child. I also had other GI issues, so I remember being uncomfortable a lot of the time and having to use the bathroom everywhere we went because my stomach always hurt.

My diet restrictions began at my diagnosis at 11 years old, and thankfully cutting out dairy was the first step and one that helped me to feel much better up until college, which is when I began experiencing more symptoms. Looking back, my parents and I did not know much at all about EoE which I believe was a hindrance in my overall wellness, and it’s most likely due to the fact that it was still a newly recognized disease when I was diagnosed, so doctor’s did not share many resources to help me.

Can you share what challenges EoE brings to your life, especially as an adult?

When I was in college, I noticed that my EoE symptoms and other GI issues began to worsen. I thought at the time it was due to stress, and that very well may have been a big factor. Over the last few years, my EoE has always been present, but I have been able to manage it by avoiding dairy, with the occasional enjoyment of eating cheese, gelato, pizza (I lived in Italy so I just had to enjoy it a little bit haha).

Since college, I have gone in for endoscopies multiple times to hopefully find out why things were worsening, but I think my biggest hindrance was that I was never able to stick with one doctor long enough to see me through treatment. For example, I went to college in Ohio, so I had a GI doctor there, then I moved home to Connecticut for only one year after college and had to switch to a new GI doctor, and I then moved to Italy and had to find a GI doctor while abroad.

While living in Italy, my doctors told me it was only post nasal drip even after an endoscopy, despite me already having an EoE diagnosis. That’s a glimpse into how widely varied healthcare can be while living in a different country. That experience was frustrating, and while my symptoms worsened tremendously my last year living in Italy, I felt that I had no support or guidance from a medical standpoint.

Again, I believe that stress really caused my EoE to become the worst that it had ever been. From about November 2019-July 2020, I was unable to sleep lying down — I slept on the couch most nights because my chest had so much tightening and pressure. I was having severe heartburn, I could hardly swallow, and I was coughing constantly.

When I was back in the States, I ended up in the ER twice because I felt like food was stuck and I was honestly in so much pain and discomfort. Fast forward, I currently still have symptoms that affect my day to day life and I’m working with a dietician, my GI doctor, my naturopath, and my primary care doctor to get to the root of my issues, which I believe is more than just EoE. I still do not know my food triggers/sensitivities since I continue to have so many symptoms even while on an elimination diet.

One of the hardest things living with EoE as an adult is that food is definitely a social thing. Everything seems to revolve around people and food and I can’t easily go out to eat. It always takes extra work for me to prep and it can be exhausting and expensive. Even when eating, it can be embarrassing to always be coughing, clearing my throat and dealing with so much mucus during and after eating.  I have been trying to avoid most of the top food allergies until I can somehow narrow down what’s actually bothering me.

What would you tell someone newly diagnosed with EoE?

I would let them know that they’re not alone and to help connect them with others who have EoE. I felt alone in my suffering for so long, but just connecting online with other people who feel what I feel and experience what I experience, makes me feel so much more empowered. I would also say to be your own advocate — you know your body best and you know when something is not right, even when doctors might tell you everything is fine. If doctor’s want to take the easy route and put you on medication forever, but that’s not something YOU want, fight for finding the root cause. There are amazing functional medicine and naturopathic doctors who have been helpful in my journey of finding the root issues, while also knowing that medicine is extremely helpful at the right times.

Have you discovered anything new about yourself living with EoE?

I’ve realized that I want to truly experience health — I don’t think I’ve been very healthy my whole life. I’ve had a lot of medical issues ever since I was really young and I’m honestly not sure why. Having EoE has made me appreciate my body more and all that it has been through. It makes me want to take better care of myself with the foods I eat and the products I use, and has made me realize that so many people have forgotten that food, herbs, sunshine, exercise and more can be so healing to us. I’ve been on a journey of really digging deep to find the root cause of not just my EoE but also my other GI issues and other medical issues. I also have realized, even though it would be easier to eat whatever I want, I have enjoyed using allergy friendly and healthy ingredients to recreate favorite family recipes, desserts, and more and hopefully I can share that more to help others.

The post Melissa: Growing Up & Learning with EoE appeared first on The Open Cookbook.

When I first removed gluten from my diet due to a sensitivity and Hashimoto’s thyroiditis diagnosis, I quickly realized how expensive off-the-shelf gluten-free food is priced. Gluten-free bread and crackers often cost more than double the price of standard products, so what do you do when your health conditions require a major shift in your food purchases?

In 2018, I had to make even more drastic and immediate changes to my diet after being diagnosed with EoE. Once I realized that my food sensitivities went beyond the Top 8 food-allergens, I decided to dive into the Autoimmune Protocol (AIP). It can be intimidating to jump into an elimination and healing diet especially when you are on a budget. Suddenly you are making major shifts in both food and lifestyle — this can feel overwhelming emotionally and financially.

With some simple and easy tips, the AIP and other healing protocols can be an affordable and sustainable lifestyle that incorporates nutrient-dense foods into your everyday life.

1. Focus on Eating Whole Foods

When transitioning to AIP or any other healing protocol, you might feel like it is necessary to buy all of the amazing compliant snacks that are now readily available. I know that was my first inclination! While it is definitely important to have some convenience foods available, try to prioritize purchasing whole, unprocessed food versus specialty products. Not only will this be more cost-effective, but you will be eating a more nutrient-dense and diverse diet — a definite win-win.

2. Eat Seasonally (or buy frozen)

Did you know that in-season produce is actually more nutrient-dense than out-of-season produce? Plus, in-season produce is generally more cost-effective since it doesn’t have to be shipped in from long distances. One great way to eat with the seasons is to shop at your local farmers market. A farmers market is an excellent way to support local farmers, ranchers, and vendors while having access to a fresh and diverse range of in-season organic produce.

If a farmers market is not available to you or if your safe foods aren’t necessarily seasonal, frozen organic produce is an excellent alternative that is cost-effective. Since frozen produce is flash frozen after harvesting, fruits and vegetables typically retain similar amounts of high-quality nutrients as eating it fresh and in-season.

3. Not Everything Has To Be Organic

When shopping on a tight budget, it can feel overwhelming to purchase only organic produce. If organic produce doesn’t fit within your budget, the Environmental Working Group releases a yearly guide that outlines the “Dirty Dozen” versus the “Clean Fifteen”. These two categories outline what fruits and vegetables have the most versus least amount of pesticide residue. For example, spring for organic celery, kale, and strawberries but save your money on avocado, asparagus, and kiwi.

Try your best to purchase the “Dirty Dozen” organic to keep your produce as safe and free of pesticides as possible — but don’t stress if you can’t afford or access these options. Every fruit and vegetable that is available to you helps you in your healing journey.

4. Don’t Forget To Include Herbs

Often overlooked, herbs are key components to a nutrient-dense and flavorful diet. Not only do they provide delicious aromatics to a dish, but they are typically very cost-effective. Herbs can be purchased either fresh or dried if preferred. A fun idea to have easy access to herbs is to grow your own on a sunny windowsill or small garden (if that option is available to you). When freshly snipped and consumed right away, herbs actually contain the most micronutrients and phytonutrients available, another great incentive to try growing your own at home.

While not an herb, I have some scallions growing in a mason jar on my kitchen windowsill that I cut from almost daily. It feels really great to connect with food in such a personal way!

5. Affordable Meat Options

It can feel intimidating when trying to source the highest-quality meat available. Luckily, there are some less-expensive options when selecting 100% grass-fed beef, bison, lamb and pasture-raised poultry.

When purchasing high-quality meat, you don’t have to buy a fancy cut. Take a look at ground meat (my favorite budget-friendly option), stew meat, brisket, and offal — these options are much more affordable compared to other popular cuts. Also, purchasing a whole chicken is an excellent option since you will have plenty of meat to go around. Plus, you can save the bones to make a soothing bone broth (again, saving you from purchasing a specialty product).

While 100% grass-fed and pasture-raised is ideal due to the preferred Omega-6 to Omega-3 ratio, it isn’t always an option due to affordability and accessibility. In the article “If I Can’t Always  Afford Grass-Fed Beef, What Should I Buy?”, Dr. Sarah Ballantyne outlines some other great options to consider when purchasing meat on a budget.

6. Shopping Around

While this requires some additional planning, try taking a look at a variety of stores to find the best deals. You don’t have to shop at a health store to find great produce. Oftentimes, a standard grocery store will carry organic produce and grass-fed meat. I personally love shopping at Asian grocery stores to find a different range of vegetables, such as daikon and bok choy — remember, variety is key to nutrient-density.

In addition, there are some fantastic resources available online. Thrive Market is my go-to online wholesale store for pantry staples such as virgin coconut oil and grain-free flours. While there is a yearly membership, I find that I save so much compared to other purchasing options. If the membership fee is out of your budget, Thrive Market accepts applications for free memberships for low-income families and students in need.

If grass-fed and pasture-raised meat is not accessible to where you live, I suggest ordering high-quality meat online. A few of my trusted sources are US Wellness Meats, Butcher Box, and Grass Roots Farmers Cooperative. US Wellness Meats often has high-quality meat on sale so I always make sure to take a look for the best deals available.

7. Keep it Simple

While it is tempting to want to try fancy recipes or experiment with AIP baking, these types of recipes require specialty ingredients and can be more expensive. When on a tight budget, try to keep meals simple with the highest-quality protein, fat, and carbohydrates that you can source.

When first starting out on AIP, one of the easiest and important pantry swaps to make is to replace refined vegetable oil with high-quality fats, such as coconut oil, duck fat, tallow, and lard for higher heat cooking and to use olive oil and avocado oil for lower heat cooking or as a finishing oil. If on a tight budget, one idea is to prioritize what is most accessible to you for each category. For example, perhaps you decide to select coconut oil for high heat cooking and olive oil for low heat cooking — this is a perfect investment that covers multiple cooking methods, such as roasting, baking, stir frying, or topping a salad. This simple change will go a long way in reducing inflammation and ultimately help your cells absorb necessary vitamins and minerals, giving you long term energy.

Just remember — fancy does not mean more nutritious or flavorful. In fact, one of my favorite meals is a simple skillet meal with ground meat, a variety of different vegetables, turmeric, and coconut oil. Simple meals can be nutrient-dense and incredibly satisfying.

8. Prioritize What Is Important To You

Finally, remember to prioritize what is important to you. Try to determine what you value the most and is accessible to you, while working within your budget requirements. It is easy to feel like you need to be “AIP perfect”, but try to remind yourself that you are already taking an important next step in your healing journey.

Citations

Nutritional Therapy Association. (2020). Basics of Nutrition [PDF document].

Nutritional Therapy Association. (2020). Culinary Wellness Part 1  [PDF document].

Mazzeo T, Paciulli M, Chiavaro E, Visconti A, Fogliano V, Ganino T, Pellegrini N. Impact of the industrial freezing process on selected vegetables -Part II. Colour and bioactive compounds. Food Res Int. 2015 Sep;75:89-97. doi: 10.1016/j.foodres.2015.05.036. Epub 2015 May 16. PMID: 28454976.

The post 8 Tips For Budget-Friendly AIP Eating appeared first on The Open Cookbook.

Let’s just say that I got really lucky in 2019 when I decided to attend the APFED (American Partnership for Eosinophilic Disorders) Patient Conference. The very first person I met at the conference was Amanda, one of the only other adult EoE patients also in attendance. We were both recently diagnosed and going through similar experiences, learning how to live with EoE and the unique challenges that come with the disease. At the end of the conference, we exchanged phone numbers and have supported each other through the ups and downs of living with EoE ever since. Thank you, Amanda!

Can you describe your path to diagnosis?

My path to being diagnosed with EoE was long and complicated (to say the least). Unfortunately, I think a lot of other EoE patients have a similar experience because it is such a rare disease and can be mistaken for other diseases like GERD.

I had my first endoscopy in May 2018. The gastroenterologist immediately suspected I had EoE and I will never forget him saying “eosinophilic esophagitis” for the first time. My mom had taken me to the appointment and when we spoke to him after the endoscopy. I still felt a little off from the anesthesia and even my mom, who was sitting next to me, asked politely, “Excuse me?” I remember she asked the doctor how to spell it so that she could write it down. After I got home and took my usual post-endoscopy nap, I remember we searched for EoE on the internet and tried to figure out what it was because I had never heard of it before.

While my first gastroenterologist suspected EoE, it actually took me nearly one year to have what I would consider an “official” diagnosis at the age of 34. I ended up changing gastroenterologists after my first endoscopy to find a closer doctor to where I live. The second gastroenterologist I saw was torn between EoE and GERD after my next four endoscopies with her, and that was when I went to get another opinion at the University of Pennsylvania’s Esophageal and Swallowing Disorders Program.

The gastroenterologist who I see now at UPenn has been a lifesaver and one of the things she said to me during my first appointment was — “You definitely have EoE.” It was comforting and reassuring, in some way, to have a doctor give me such a concrete answer after a year of searching for answers.

What symptoms led you to seek medical care?

My worst symptom was constant, unrelenting, pervasive, maddening, aggressive acid reflux. Did I use enough descriptors? The reflux was awful and would wake me up at night from choking and coughing, and I considered it to be a “good day” if I could make it to 10 a.m. without experiencing any reflux. Most days, I would wake up with reflux in the morning and it would just get worse throughout the day. It felt like it was bubbling up into the back of my throat and I could hear it crackling sometimes. It was so uncomfortable.

I tried every over-the-counter medication I could find, changed my diet, and made all of the lifestyle changes I could find recommended on the internet, but none of it worked or alleviated the reflux. I also had significant nausea, stomach pain, and some issues with swallowing food. Thankfully, I never had a complete impaction with food getting lodged in my esophagus, but I had a few instances where food would get stuck for a moment and slowly move through my esophagus, which can be scary. The reflux was definitely my worst symptom and what prompted me to seek treatment. I first went to my primary care doctor and he prescribed Omeprazole. Once we realized I could not take that due to side effects, he referred me to a gastroenterologist.

What do you find to be the most life-changing aspects of living with EoE?

Right now the most difficult aspect is the amount of medication I need to take each day just so I can eat comfortably. I currently take a swallowed steroid (Budesonide) and it is not very portable because it has to be mixed with honey right before taking the medication. Pre-pandemic it was annoying to go out to eat and have to mix my medicine at the table after I was finished eating. I made sure to always carry a small dish, spatula, honey, and the Budesonide in my purse if I wanted to go out to breakfast or dinner.

Although it is frustrating to have to take medicine multiple times per day just to eat without symptoms, I am extremely thankful that my EoE is in remission and I can eat everything. I think another difficult aspect is the worry that comes along with EoE. I have tried so many treatments and they have all failed after a few months, so this is the longest I have gone with one treatment that has continued to work. I feel like sometimes I am waiting for the other shoe to drop and for this treatment to not work anymore. 

Before my current treatment plan with Budesonide, I tried multiple elimination diets. During the elimination diet trials, the most challenging aspect was finding the joy in eating. I didn’t want to cook, I didn’t want to go grocery shopping, and I didn’t want to see any friends or family. I mostly didn’t want to see people because this usually included a meal or some type of food, requiring me to bring my own food or having to explain to others why I didn’t want them to try to make me food (I was always afraid I couldn’t trust the food although I know everyone meant well). The elimination diet was a very difficult experience and isolating experience. It was exhausting and I felt like an outsider.

Many of your symptoms are triggered by environmental and chemical allergies. Can you describe how this has impacted your day-to-day?

I am definitely convinced that my EoE triggers are from environmental and chemical allergens since after trying several elimination diets my EoE never improved.  It seemed like no matter how I adjusted my food it did not affect my EoE. I have discussed it with my allergist and gastroenterologist and they both agree it is a possibility too. Many of the EoE moms I met at the APFED Patient Conference said they usually don’t have their children do endoscopies and trial treatments during the spring when environmental allergies are usually at their worst. 

After I was diagnosed with EoE, I went through a period of time where I was getting hives that would appear, disappear, and reappear throughout the day. After doing patch testing with my allergist, we figured out that I have allergic contact dermatitis and am allergic to a host of chemicals and ingredients commonly found in most products we all use.

That diagnosis affected my day-to-day life tremendously because I usually get hives on my hands or any exposed skin on my arms whenever I leave my house, which is my safe zone. All of the products I use in my house are safe for my allergies, but when I go out in public I am usually exposed to cleaning products and other chemicals that will trigger my hives.

Can you share what challenges EoE brings to your life, especially as an adult?

As an adult, I definitely faced challenges at my work and especially when I was trying online dating. Online dating is difficult enough as it is, right? But it became even more difficult for me when every date usually revolves around food or drink. I never wanted to explain EoE to a new person on a first date, so I think unfortunately it deterred me a little bit from dating as I was trying to get the disease under control. I never trusted eating out while I was on an elimination diet, so that really limited my options in the dating world.

At work, I experienced similar difficulties when colleagues or clients would want to go out to eat. I didn’t want to explain EoE to “work” people because I tend to be very private with my personal life at work. It was also challenging because even if I could avoid explaining, people would always ask questions if I didn’t order food or just had a coffee at lunch.

Any tips for balancing living with EoE while working in an office environment?

My biggest tip would be to make sure you have everything you need to be comfortable at work and to not put too much stock into what other people think. At my current office, I have all of my own “safe” cleaning products at my desk so that I can keep my own space clean and free from other cleaning products. Previously, I always got hives from the products they used on my desk so I just notified my boss that I had allergies and did not want anyone cleaning my office. Luckily, my current boss is great so of course he agreed and didn’t ask me too many questions.

When I was on the elimination diet and had to go out to eat with a client, I would just simply say I had allergies and it was too difficult for me to eat out. People usually respected that response and didn’t ask me too many questions, but it was definitely hard at first. A couple of times I tried to bring my own food to restaurants, but many restaurants will not let you do that, so I would just have a coffee. Although it felt isolating and strange, I realized I had to advocate for myself and not worry about what other people think, which is of course easier said than done.

What have you learned living with a rare disease?

I have learned not to take my health for granted. I never really thought about it before EoE affected me and my ability to eat. I try to be more appreciative of life, in general, and eating food, specifically.

I know it may sound dramatic, but I truly appreciate that my diet is unrestricted because I realize my EoE and treatments may change and who knows what the future holds, so I have to just be appreciative now for what I can do. I think it is important to be appreciative and always advocate for yourself in your daily life and with doctors. Advocating for yourself is especially important when you have a rare disease because the path to diagnosis can be extremely difficult.

What would you tell someone newly diagnosed with EoE?

It will get better. Find a gastroenterologist who is well versed with EoE and the most recent treatment options and research. That is the most important advice I can give. It helped me so much to find my current doctor and significantly reduced my stress level because I know I can rely on her and what she tells me.

I would also say to get involved with APFED or other groups dedicated to eosinophil-associated diseases because it helps you feel less isolated. If you’re as lucky as I am you might also make a friend who will turn out to be your biggest source of support. Sometimes you need a friend who knows what you’re going through and just gets it.

Have you discovered anything new about yourself living with EoE?

I am proud of myself and my ability to have such strong willpower to complete the various types of EoE treatments I had to do (elimination diet, new medication, etc.). I am also proud of how I keep everything in perspective and try to keep a relatively positive attitude despite the EoE diagnosis. I try my best to be resilient and live life to the fullest.

The post Amanda: Balancing Life With EoE appeared first on The Open Cookbook.

Thank you to Lara for sharing her EoE story and the challenges to reach a diagnosis. If you would like to learn more about Lara, be sure to follow her on Instagram (@epinepherywhere).

Lara’s EoE Story

My name is Lara, I’m 27 years old and from Washington, D.C. I’ve lived with life-threatening allergies for my entire life and also have several allergic conditions, including EoE. While sometimes this can feel like a lot to deal with, I do my best to take it in stride and not let it get in the way of my life. Things I still love to do despite my allergies and chronic conditions: traveling, exploring D.C. and eating way more sweets than a normal person should be able to!

When were you diagnosed with EoE?

I was first diagnosed with EoE when I was 23. I had never heard of EoE and had no idea what it meant for me day-to-day or long-term. At the time of my diagnosis, I wasn’t experiencing the typical symptoms of EoE, such as difficulty swallowing or chest pain. While it wasn’t great news to get a new and unexplained diagnosis, the fact that I wasn’t symptomatic at the time let me ignore my diagnosis for those first few years. I adopted an ignorance is bliss attitude and chose not to think too much of it. This of course changed as time went on and I eventually developed symptoms and needed treatment.

How long did it take to receive a diagnosis?

During university I became very sick. I developed symptoms such as extreme fatigue, loss of appetite, brain fog, etc. These symptoms lasted for months and no doctor could find a reasonable explanation for what was causing this. I saw infectious disease doctors, rheumatologists, hematologists – you name the specialty and I probably saw the doctor. Eventually, the only indicator of anything wrong was an extremely high level of eosinophils in my blood. My doctors had never seen a number that high (I’ve always been an overachiever!).

Shortly after the doctors discovered my unusual blood count, the unexplained symptoms I had been experiencing disappeared, so I wasn’t too concerned with why I had so many eosinophils swimming around in my veins and just went on with my life. During this time I continued to see doctors and they kept telling me I had higher and higher levels of eosinophils in my blood.

I eventually had an allergist who suggested that I get an endoscopy as she thought the eosinophils in my blood could be indicative of EoE. When I talked to my gastroenterologist about performing an endoscopy, he was very hesitant, as he felt that the risks of the procedure outweighed the chances that I actually had EoE. I remember telling him that if there was even a 1% chance I had EoE that I wanted to go through with the procedure. He told me there was 1% of a 1% chance that I had EoE. Then, go figure, I was that 1% of a 1%! After that first endoscopy I was finally diagnosed.

At the time of my initial diagnosis, I wasn’t experiencing your typical EoE symptoms, but in the years since this has changed. Now that I have developed symptoms, my life has been a balancing act of trying to find the right medication that works for me that also doesn’t cause side effects that outweigh the benefits. Before I started this EoE journey, I used to think that when you get sick, a doctor prescribes medication and then you get better. I’ve since learned that diagnoses aren’t linear and it’s a constant battle of changing symptoms, changing medications, and for me, lots of endoscopies.

Can you describe your medical team for EoE and how they help you through the process?

To get my initial diagnosis I saw so many doctors. It felt like they just passed me back and forth like a football until the ref finally stepped in, grabbed the ball and said “Hey, I think it’s EoE!”. Now that I have a diagnosis I work closely with my allergist and gastroenterologist. Since EoE is an allergic condition of the esophagus, I’ve found that the combined care of these two specialties has worked the best for me. They work closely together, bouncing ideas and expertise off each other to give me the best quality of care.

Can you describe your approach to balancing life-threatening allergies to peanuts and treenuts with EoE?

The majority of individuals with EoE have certain foods that cause their EoE symptoms to worsen, so a diagnosis can also result in extensive food restrictions. My doctors believe that my EoE is genetic rather than the result of ingesting allergens, so as of now I haven’t had to limit any additional foods with my diagnosis. That being said, I’m not sure I believe that this is the case. While my diet is still varied at this point, I am in the early stages of figuring out my EoE, and think that additional food restrictions could be very possible in the future.

I’ve had my anaphylactic allergies for so long that managing them is second nature at this point. While I’m comfortable in managing my allergies, when I was first diagnosed with EoE, it felt like this new big scary thing I didn’t understand that I now had to deal with on top of my allergies. While I didn’t welcome my EoE diagnosis with open arms, I eventually came to terms with it as another aspect of my health that I have to manage.

Can you share what challenges EoE brings to your life, especially as an adult?

Because I haven’t had to further limit my diet, I haven’t found too many social challenges that go along with my EoE. For me, the biggest challenge by far is the medication. I’m currently on a liquid medication that I have to take day and night, that needs to be refrigerated constantly, that I can only get in a two week supply – plus, it is not covered by my insurance so it’s very expensive.

I love to travel and while I haven’t been able to travel far recently due to the pandemic, I’m already envisioning the difficulties that will come along with travel and medication management when I can’t get more than 6 feet from a 2 week supply of refrigerated medication. I also have been trying to move abroad for the last few years and managing my EoE has created an added layer of complication in that process. I’ve been doing extensive research and making many overseas phone calls to try and find out if I can get the medication I need outside of the United States. While this is challenging to navigate, I’m hopeful that I can find a creative solution.

What have you learned living with a rare disease?

I’ve learned that you really have to advocate for yourself and for your care. Doctors aren’t miraculous and can’t snap their fingers and figure out a difficult diagnosis and then immediately provide effective treatment. You need to be able to voice your symptoms, what tests you want done, and what medications you want to be on.

Being your own healthcare advocate is so important, especially with a rare condition. You also need to find healthcare professionals who will listen to you. Doctors are always looking for the most obvious diagnosis, so if you don’t fit that mold, oftentimes they will write you off. You have to search and find a healthcare provider who listens and will work to find a diagnosis and the most effective treatment for you.

What would you tell someone newly diagnosed with EoE?

I would tell a newly diagnosed individual to find a community of people that understands what they’re going through. When I was first diagnosed, I had absolutely no idea what it meant for me, and honestly my doctors didn’t know either, so I felt like I was left with no information. Finding a community of people online who also have this rare condition has been helpful and made me feel much less isolated. Also, funnily enough, one of my best friend’s boyfriends also has EoE. We found out about each other’s diagnoses by chance and now we complain about our medications to each other and compare notes from our doctor’s appointments!

Have you discovered anything new about yourself living with EoE?

I’ve learned that I’m resilient. I’ve had life-threatening food allergies on top of other medical issues for my entire life, so it was initially really daunting to receive yet another diagnosis. But eventually I learned that I can not only handle it, but that I can make the best of it. It’s another part of my journey and that’s okay.

The post Lara: Journey to an EoE Diagnosis appeared first on The Open Cookbook.

One of the biggest challenges of living with EoE is not only facing food eliminations but the actual food reintroduction process. Since EoE is a non-IgE mediated allergic disease, it can be difficult to pinpoint what foods are causing symptoms since reactions can be delayed between 24-72 hours. In addition, EoE can’t be monitored by symptoms alone and biopsies must be performed via endoscopy to confirm if a patient is reacting to a specific food.

Typically for an EoE food trial, a patient trials between one food to a small group of foods over 2-6 months before having a follow-up endoscopy. If the biopsy results come back without any eosinophils in the esophagus, the food or food group is considered safe.

Food trials can be emotionally and physically exhausting for both the patient and family. Having dedicated the past year to food reintroductions outside the Top 8 food-allergens, I wanted to share what I have learned along the way. I hope these suggestions encourage you when you might feel defeated or anxious — you aren’t alone in these feelings.

1. Consult your medical team

EoE patients typically work with a gastroenterologist, allergist, and registered dietitian. Before beginning any food trial, it is important to review your food reintroduction selections and food trial process with your medical team. Since many EoE patients also have IgE-mediated food allergies, discuss with your allergist to see if you might need to undergo additional allergy testing before reintroducing a specific food.

2. Select foods for nourishment and joy

When I first started the food reintroduction process, I was eating roughly ten foods, all outside the Top 8 food-allergens. It was a bit overwhelming to think where do I even begin when so many foods had been eliminated.

How do I determine what foods I want to trial?

• Select foods that will provide a more varied diet and fill-in any missing key nutrients
• Try to introduce a range of food types that allow for recipe variation
• Make sure to select foods that bring joy and excitement (this is also important!)

For example, one of the first foods I decided to reintroduce was cassava flour since it is a calorie-rich food that is also considered to be low-allergy. In addition, it can be used in grain-free and allergy-friendly baking. Cassava flour ended up being an incredibly versatile safe food for me and I have gained a lot of nourishment and food joy from this one ingredient.

3. Face your food fear and anxiety

It is only natural to feel nervous and anxious about trialing a new food and you are definitely not alone. If you have experienced painful reactions to food before, it can be very triggering and scary to take that first bite.

How do I cope with my food anxiety around reintroductions?

• Focus on positive experiences when food has been a success
• Trial food in a safe environment, such as my own kitchen and home
• Have a family member or friend with me, giving me support and encouragement
• Take a small bite and distract myself with a movie or book — reassess how I feel in a couple of hours
• Remind myself that adding a new food will lead to an expanded and more diverse diet that will help meet my nutrient requirements

After finding a few foods that I was able to reintroduce with success, I started to feel more comfortable with the process. With time, I built up my confidence and feel excited to try new foods again.

4. Don’t forget to go slow

Taking your time with food reintroductions is really important and something I am not always great at following. Once I feel like a food might work for me, I get really excited and I want to start adding more and more foods without taking the time to evaluate. Unfortunately, this can make it difficult to pinpoint what food is causing reactions and you might have to start over. So remember — one food reintroduction at a time.

What process do I follow when reintroducing a food?

• Pick a day without any symptoms
• Start with 1 tbsp of the new food and wait a couple of hours to evaluate
• If the food seems to be okay, try again the next day. If there isn’t any reaction, wait a couple of days and try the food again, gradually building up the amount over a few days.
• Don’t make any dietary changes while reintroducing the new food — keep variables as minimal as possible.
• If a new food causes a reaction, stop and ask your doctor if you have any concerns. Before trialing the next food, wait for all symptoms to clear up. Sometimes, this can take up to a couple of weeks.

Depending on the food, the process of reintroduction for one food can take me between 2-4 weeks. Since the reactions with EoE are delayed, I like to make sure I give enough time after eating a new food before trying anything new again. It is common for EoE patients to start feeling symptoms up to two weeks after introducing a food.

5. Time to become a detective

When dealing with food allergies and intolerances, it is important to become your own detective. Since the beginning of my EoE diagnosis, I have kept a highly-detailed spreadsheet that documents my food elimination and trialing progress. It is a helpful tool that I use to document both my safe foods, failed foods, and the foods that I am currently trialing.

How do I organize the food trial spreadsheet?

• Outline each food by category, such as vegetables, fruit, herbs, meat, etc.
• Create sub-categories — for example, the vegetable category is organized into roots/tubers vs. leafy greens. This organization allows for me to evaluate if there are any trends of what types of food might be safe for me.
• Make sure to keep a detailed list of reactions to foods — this is really important information that can also help your medical team assess your progress and treatment.

6. Listen to your body even when it is difficult

While I have always been hyper-aware of my body and any symptoms that I might be experiencing, finding acceptance that a food might not be working for me can still be a challenge.

During one of my recent food trials, I failed to be honest with myself. I was trialing pears and really wanted it to work for me since it has always been one of my favorite fruits. I made sure to eat it well-cooked, but I still reacted. I tried removing the peel before cooking, but sure enough my symptoms came back. I was so desperate to add some fruit back into my diet that I was in denial.

In retrospect, I knew this food wasn’t safe for me based on the symptoms I was experiencing. It can be hard to accept when a food doesn’t work for you, especially if it is something you miss.

How do I cope with disappointment and finding acceptance when a new food is not safe?

• Focus on other things that are not food-oriented that bring me happiness — go for a walk, watch a movie, play with my cat
• Remind myself of the foods that I can eat and the progress that I have made
• Make myself a safe meal that is fun and enjoyable

7. Discover your creativity

If a food reintroduction seems to be going well, now comes the fun part! As anyone with food allergies or intolerances knows, you have to become really creative with cooking since you can’t rely on standard recipes and ingredients.

What are some ways to get creative and have fun when trialing a new food?

• Try different combinations of your safe foods with the reintroduced food — any new interesting flavor or textural combinations?
• Experiment with a variety of cooking methods such as roasting, steaming, stir fry, etc.

8. Patience

As cliché as this sounds, it is important to remember that living with EoE is a marathon and not a sprint.

EoE and other EGIDs are life-altering and can greatly impact your quality of life. It is okay to feel frustration, exhaustion, and grief. You will have good days and bad days. Foods will be safe one day and mysteriously not safe the next.

Just remember that the healing process is not always linear and it is perfectly okay to move at your own pace.

Resources

• CHOC Eosinophilic Esophagitis Clinic
• Cincinnati Center for Eosinophilic Disorders

Dealing with Food Allergies (A Practical Guide to Detecting Culprit Foods and Eating a Healthy, Enjoyable Diet) by Janice Vickerstaff Joneja, Ph.D., R.D.N.

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