Category Archives: Encouragement & Helpful Hints

Encouragement for soyvivors.

My Life Before I Knew About My Soy Allergy

This is my story on how I am dealing with my food allergies in hopes that it will be helpful to you as well.

I was first diagnosed with food allergies as a child at a Christmas party when the red dye in some jello made me itch all over. Seasonal and indoor allergies were a part of my everyday life. When I attended college, I discovered that sulfites created an unsightly red, scaly rash all over my eyelids, and soon after, I was diagnosed with tuna, cod, and salmon allergies. Reproductive issues that had kept me at home for much of my high school years continued to plague me as I carried hot water bottles to class every day to help withstand the pain. My parents carried me from specialist to specialist at the top hospitals trying to figure out what was wrong with me so that I could someday function as a normal adult.

As I was finishing my last semester of my master’s degree in voice, I found myself unable to sing. Medical experts told me that I had something called spasmodic dysphonia, could not find the cause of my condition, and told me I might never sing again. How I ever graduated with either one of my degrees is a miracle. I was also diagnosed with IBS, acid reflux, hypothyroidism, high cholesterol, had mystery skin rashes that would not go away, and later suffered six miscarriages in my mid 30s.

In November 2013, I quit my job because I was so incredibly exhausted and sick from the toll that my health had taken on my life. The next month, I awoke twice to find that I was literally choking. I don’t mean that I was having trouble getting my breath. I could not breath at all. I thought I was going to die before anyone could figure out what was wrong with me.

In February 2014, after multiple sinus infections and being told that I would need to have a serious acid reflux surgery that would likely require me to learn to swallow and eat all over again, I knew I had to do something. My doctors had never been able to find or treat my problem and I knew I had to take charge. I decided to begin an elimination diet which quickly unveiled a serious allergy to soy. At the advice of my doctor, I completely eliminated soy from every household, beauty, and food product.  I threw out everything in my house, replaced everything with soy free products, and started carrying my own hand soap, toilet paper, food, and antihistamines wherever I went. I also discovered that the very acid reflux medicine that was prescribed to help the reflux contained soy, which was only making the reflux worse.

The health issues that had plagued me for years began to disappear, significant weight loss occurred, and I finally felt like a healthy, energetic human being.  People who saw me regularly no longer recognized me, and I began to notice that I not only felt better, but I felt like a different and much more vibrant person. I was able to return to work in the same department and thrive in my job. Here’s a photo before my diagnosis and a photo of me that I took yesterday:

 

If you are new to a food allergy diagnosis or other life-changing dietary change, you are likely working the hours of a full-time job trying to eliminate foods from your diet, learning to cook all over again, developing meal plans, researching, and calling manufacturers to inquire about product ingredients. I quickly realized how incredibly overwhelming it is for the average working adult or parent of a food allergic child to manage their life while staying healthy and safe.

If I could give someone three pieces of advice in dealing with food allergies or health issues, it would be this:

1. DO NOT, UNDER ANY CIRCUMSTANCES, GIVE UP, STOP GOING TO THE DOCTOR, OR STOP FIGHTING FOR YOUR HEALTH. It may have taken me 37 years to figure out that I had a soy allergy, but think about all the doctors I saw that could not find it either. If the doctor tells you there is nothing that can be done, don’t believe them. Find another doctor and keep going until your find a doctor that is willing to fight with you. I just had to keep searching and praying for answers until it was time for my miracle to present itself.

2. YOU MUST LISTEN TO YOUR BODY AND DO WHATEVER IT TAKES. Your doctor cannot tune in and listen to your body for you. You have to recognize the signs of a problem which is much, much more difficult than you may think. When your body gives you the signal that something is wrong, it is your responsibility to take that information to you doctor and do what needs to be done to restore your health. Your doctor will not be able to eliminate your food allergy for you, and “cheating” and adding a little bit of the food here and there will only make matters worse. You must commit 100% to taking charge of your health.

3. GIVE YOUR BODY WHAT IT NEEDS TO HEAL ITSELF. While that may mean following your doctor’s advice and medication regimen, that also means feeding your body the healthiest food, providing the healthiest lifestyle, and giving your body rest and relaxation so that it can repair itself. Your body is smart and your body has the capacity to heal.

Calling All Soyvivors: Have some of your health issues disappeared as a result of eliminating your soy (or other food) allergy?

 

 

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Food Allergies: Finding the Right School or College

Yesterday, I had the opportunity to speak with a local food allergy support group about my experiences living with multiple food allergies as an adult. Since I work at a local college, I was asked to speak about two things: how to prepare for going to school or college as an adult with food allergies and what it’s like in a workplace setting for someone with food allergies.

This post will discuss what I’ve learned related to the college experience, and my next post will be about working with food allergies.

 Finding a College or School

Do Your Homework

  • The best time to research a school is before you apply or get excited about attending that particular school.
  • View the school’s website for information related to food allergies, but don’t get discouraged if you do not find anything. This just means you need to ask more questions.
  • Research the student activities department (sometimes student affairs, student government, etc.) and find out if there are student organizations related to food allergies or special dietary restrictions. You may even be able to contact the organization’s advisor or find some students you can contact. Ask how they handle their food allergies on campus and if they have had any issues.
  • Are there enough food/specialty stores in the school’s community to meet your dietary needs? For instance, if the nearest grocery store is 30 minutes away, you may need to reconsider the school. You may not have time (or perhaps transportation) for lengthy commutes to the store.

What Accommodations Do You Need?

  • What are your living arrangements? Commuting vs. living on campus requires very different accommodations.
  • What about food? Are you bringing your own or does the school need to provide?
  • What kinds of accommodations do you need for food served in a classroom or allergic materials used for group projects?
  • Consider other needs such as cleaning supplies used in dorms, toiletries you could be allergic to, and laundry areas using unknown detergent.

Once you have determined what your needs are, you should:

Reach Out To The School

  • Contact the disability services department to discuss.
  • First, ask an open-ended question about how they handle food allergies and see how they respond. Do they immediately know their policies related to food allergies?
  • How many students do they have on campus with food allergies?
  • Can they provide you with safe living arrangements?
  • What happens if a roommate is not cooperative? How quickly is the issue resolved?
  • If you cook for yourself, can they provide a place for you to safely store/heat your food?
  • Contact the food service provider, preferably with disability services included in the conversation.
  • How many students do they serve with food allergies?
  • Do they have allergen menus updated daily?
  • How confident are they that their food suppliers follow good food labeling practices?
  • What steps do they take to avoid cross contact?
  • Many food service providers have campus nutritionists. However, keep in mind that nutritionists may or may not be trained in food allergies. However, if they are not formally trained in food allergies, they may still have extensive experience working with the food allergic or even have food allergies/intolerances themselves.

Other Items to Consider

  • If you are living in an apartment, choose your roommates carefully and look for ways to secure your food.
  • Some apartments even offer bedroom doors with locking systems so that you can safely store your food and belongings.
  • Do you need to rent two bedrooms in a multi-bedroom apartment? (You could use one for your bedroom and one for a food storage area as approved by the apartment complex.)
  • Once you accept an admissions offer, immediately connect with any student organizations that you found in your research that are related to food allergies or dietary restrictions. It’s important to expand your search and make sure that you reach out to any organizations that relate to dietary restrictions. Finding students who are already navigating campus successfully with food allergies or dietary restrictions will be a big help to you and may also help you make friends much more quickly.

What is it like to go to college with a food allergy and what should I know before attending?

  • We know that 1 in 13 children has food allergies, but in my experience, food allergies have already become very common in college.
  • You will unfortunately find fellow students who have food allergies and do not take them seriously or are too embarrassed to tell anyone. Do not let this sway you from taking your own health seriously. You will likely find that the students that are not taking their food allergies seriously are also dealing with more health issues. They are also putting themselves at risk for life-threatening reactions.
  • Be the absolute best student you can be. I was so sick during my high school and college years and missed tons of class, but I still graduated at the top of my class. My professors knew that I was dedicated, worked hard, and they in turn were willing to work with me.
  • Be confident when you talk about your food allergies. There is no need to feel embarrassed, and confidence will help others connect with you and assist you in making lasting friends.
  • You may find that everyone is fascinated by your food allergies and wants to ask lots of questions. You can be a good ambassador for food allergies, so don’t be intimidated or aggravated by all the questions. This is your chance to educate by telling your story.
  • You may find that when you tell people that you have food allergies, they may also have food allergies and haven’t said anything until now. This has definitely been the case for me with some of my own students.
  • It’s important for you to tell your close friends (and also school administrators) that you have food allergies. Not only does it help you find the right kinds of friends, but it’s for your safety as well. They can help you if you get into a situation where you are reacting and also watch for others that are not as respectful of your food allergies.
  • Never, ever compromise your health for anyone. Know your boundaries and ask for additional needs in a spirit of cooperation. Asking for help in a respectful way goes much further than asking in an angry or militant way.

Cooking Tips For Supplying Your Own Meals

  • Plan your meals efficiently
  • Plan your meals at least a week in advance according to your class schedule.
  • Pick meals that will allow you to cook once and eat twice.
  • Cook in batches.
  • Invest in a small chest freezer.
  • What is your back-up plan if you forget your lunch?

An Allergy Friendly Vacation In Photos

My parents, husband and I recently vacationed at the beach and had a great time. However, it takes a ton of preparation, thought, and luggage to have an allergy friendly vacation. While food is an obvious part of the process, there are other things that many of us have to think about when planning to be away from home.

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I once had a reaction to a couch that had sunscreen in the fabric, and couch foam and fabric can also contain soy. I always bring a sheet to place over the couch along with a throw blanket in cooler months.

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I always bring some king size sheets so I am prepared for whatever size bed is available. I also bring my own pillows and blankets.

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My own toilet paper is a critical part of packing.

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I bring my own towels from home that are washed in my laundry detergent.

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Housekeeping is very tricky when you travel with your own toiletries and sheets. When my husband and I travel alone, I request no housekeeping. When I travel with others that want housekeeping, I put a sign on my bed so that sheets are not mistakenly changed.

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I also bring my own soap as well as a sign for a bathroom requesting no housekeeping so that my toilet paper, towels, etc. do not get mixed in.

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I try to drink from my own glass bottles whenever I can, but the recent floods in South Carolina made it necessary to drink from plastic water bottles. I labeled my bottles with my initials. This is not just to keep from drinking after someone else to avoid germs. Drinking after someone can expose you to allergies based on what they have been eating.

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Other items I took with me were dishwasher detergent, dishwashing liquid, household cleaner, and laundry detergent.

For someone that is newly diagnosed with food allergies, planning to be away can be a daunting task. The good news is that is gets easier and easier. Try making a list of everything that you pack for your first vacation, save it on your computer, and make changes to it each time you travel. It will take the stress out of forgetting something, because you will have everything written down.

I can also tell you that now that I am accustomed to bringing my own personal items, I am able to relax so much more. There’s something very comforting about being surrounded by your own things from home, and you can feel like you are really creating a safe environment.

Calling All Food Allergy Survivors: What other items do you enjoy traveling with that help keep you safe?

A Survivor Story

This week, I am turning over a new leaf.  I am getting back to the basics of why I started this blog and my commitment to help those with food allergies and intolerances. I would like to start with the story of Denton, a truly talented and inspiring individual that I have been blessed to know for over a year now. Those of us with food allergies or intolerances know that food issues can be related to a host of immune system and/or digestive issues. While many of us know someone with food allergies, there are many other immune system and digestive ailments that share a common thread: food. I know that many of you will relate to Denton’s story and my hope is that you will also find encouragement.
It all started my junior year in high school. At the time was playing 3 sports, led in numerous clubs and organizations, and somehow managed to keep a 4.0 GPA. One day, the school held it’s annual blood drive. I showed up eager to donate to the cause. When it was time to draw blood, The nurse pricked my finger to check my iron levels. With a look of motherly concern she eyed the screen, then me, then the screen again. She tells me not only am I iron deficient and anemic, but I have the lowest reading of all the students she tested today.
Then came the fatigue. I went from straight A’s to was now nodding off in class, grades slipping. Athleticism began to wane. Then came the stomach cramps from hell that kept me up many nights. This was much more than your average tummy ache and it was time visit a doctor.
Several colonoscopies and months later I was diagnosed with Chron’s disease – An incurable, unpredictable form of Inflammatory bowel disease (IBD). Not the best news for a kid one year away from attending college. A kid who is more than ready to fully experience the “college life”. This made hiding my Crohn’s from others seem like the most viable option.
Throughout the rest of high school and into my early college years, I longed to just be “normal” person. My remission periods provided a tantalizing glimpse of this normalcy making it very easy to forget I even have the disease. Crohn’s was knocking at the door and instead of answering, I waited for it to leave, Unfortunately, Crohn’s was not playing ‘ding-dong ditch’. Late in the fall of my junior year, the disease kicked down the door.
I woke up feeling extremely bloated and nauseous. I skipped class that day and decided to get rest. I made sure not to skip any meals because refusing to eat exacerbated issues in the past. Dinner rolled around and I was still feeling strange. I felt so full and started developing what some like to call a “food baby”. This was particularly strange because I didn’t eat much that day. It grew larger as time passed and with it, more pain. I ended up being rushed to the emergency room that night for a complete intestinal blockage. The doctor said it was so severe that if I had waited a few more hours the toxins would have caused my liver to fail and my heart to stop. As I lay there in the hospital bed I realized than in order to live a long and prosperous life, I must control Crohn’s and refuse to let it control me. The most useful tool in any fight is realization that you’re not alone in it. That is why it’s important to join a support system full of people that are going through your struggle. That is also why, even though I don’t necessarily have a food allergy, I fully support Alanna’s vision with AllerThrive.
I’m happy to admit my days of hiding are over. I keep a food diary now which helps me determine what foods cause my flare-ups. I also joined the Colitis and Crohn’s Foundation of America in hopes of starting a chapter at my college to spread awareness for IBD. I’m doing a better job of saying no to my trigger foods, even when tempted with warm, southern-fried cooking I was raised on. But this growth wouldn’t be possible without the influence of people like Alanna. She has this optimism about her food allergy that is infectious and inspiring. That kind of resilience is to be commended.
I hope you have enjoyed Denton’s story, and I look forward to reconnecting with many of you in the months to come. If you have a story to share, contact me at allerthrive@gmail.com.

Are You Getting Correct Food Allergy Info From Social Media?

I have seen a lot of incorrect information out there on social media sites. I think a lot of users believe that because a board is by invitation only or a “closed” board, it somehow makes the information more reliable. Here’s a great example of a scenario that I see very often on food allergy boards:

Question: Have any of you found a specific product that is free from (insert your allergy here)?

Many members begin to comment, and some of them may be correct, but many are not. Ask yourself the following questions:

  • Did this person very recently call the manufacturer?
  • Did this person ask the right questions of the manufacturer?
  • Do you know that the person responding to the post has the same level of sensitivity as you do?
  • Is this person a legitimate food allergy sufferer or a company rep trying to push a product?
  • Do you trust someone you do not know to give you the OK to put a product on or in your body?

Chances are, the advice you are getting may not be as reliable as you had hoped. However, there are situations where asking this question in a social media group can be helpful. If you are planning to take the product list you are given on the board and call each manufacturer, then this information may be useful as a starting point to do your own research.

. It’s important to make sure that the phone calls you make give you the information you need to avoid an allergic reaction.

Shopping Safely with Food Allergies

Minerals

To finish off my birthday week, my family and I visited North Carolina yesterday to get away from the heat and have some fun. We visited a beautiful waterfall and had a GREAT time at a gem mine. There was only one problem: While the actual gem mine was outdoors, the indoor store was running a machine that was pumping some kind of nice smelling aroma through the air.

When I arrived and spotted the machine, I immediately left the building and the clerk turned off the machine. Even though the clerk turned off the machine, I left because I knew there could still be allergenic particles in the air. After we finished gem mining, I briefly went inside to discuss a black star sapphire that I wanted for a necklace, but the machine had been turned back on again. I left as quickly as I could, but it was too late. A few minutes later, I was feeling itchy.

There are many types of stores that can pose issues for those with food allergies, because many foods are used in the making of air purifiers, cleaning products, and the actual merchandise. This can apply to any store, restaurant, your favorite fitness center, massage therapist, yoga class, or even your friends and family’s homes.

If you are entering a new area and you have someone with you, ask them to go scope it out for you first. Keep in mind the following things:

  • How does the air smell? While some allergens will not produce a smell, an aromatic shop or home could signal that it is time to ask more questions.
  • Be aware of any area that calls for a shop to spray cleaners on a surface. I have had employees spray cleaners right in front of me and accidentally on me. (And yes, I had a reaction.) This may be a jewelry store cleaning their counters, a restaurant cleaning their tables, or simply someone washing the windows.
  • Does the store sell candles, home fragrances, or potpourri? Remember that those products have likely been sitting there for quite some time in an enclosed space.
  • If the store sells food, do you see any bulk bin aisles that could have products like flour or other small items with your allergens that could easily get into the air?
  • Make sure you wash newly purchased clothing in your own safe laundry detergent before wearing.
  • For me, I have to carry toilet paper and soap with me wherever I go, so certain allergens may call for you to avoid using a store’s personal care products.

By being aware of our surroundings, we can better enjoy our shopping experiences. I have to admit the retail therapy is one of my favorite ways to relieve stress, so get out there and shop safely!

Calling All Soyvivors: Share your shopping advice in the comments below!

Lessons Learned From Vacation

AlannaClubhouse

Last month, my husband and I took our first week-long vacation as a couple. Sure, we have had family vacations and long weekends away, but this was the first time that he and I had embarked on a full week away from home just the two of us since my soy allergy diagnosis.

If you have read my previous vacation posts, you know that eating out has always been a huge part of our family tradition. Why cook, right? It’s vacation from everything including cooking! This year, I knew that had to change, but I also knew that I wasn’t about to spend any more precious vacation time in the kitchen than I had to.

Even though I have dealt with food allergies for years, soy was very different for me. It changed everything from what products I ate to what products I used in my house. At first, I honestly thought that I would never be able to travel again. I could not fathom how I would actually be able to relax with so much new responsibility and safety considerations.

As time passed, my confidence grew, and eventually I began to venture out. I wasn’t completely sure that I was ready for a long vacation, but it turned out that it was the most relaxing vacation that I have EVER had. Here’s what I learned:

  • Yes, there is a LOT more packing involved. Towels, sheets, detergent, soap, toilet paper, non-perishable food, and coolers were among the many things that I took with me. The upside is that I found myself surrounded by my own things, and that made me feel at home and relaxed. It was well worth the effort!
  • I really thought I would spend a good bit of time in the kitchen, but preparation in advance proved otherwise. I knew what grocery stores were in my area and I came prepared with a meal plan. I set out to cook dishes that would make great leftovers and dirty very few dishes. I never thought I could eat such great meals with such little effort.
  • Because I prepared my own meals, I did not send my mind and body into a frenzy wondering if this would be the meal where the restaurant would make a mistake and send me into an allergic reaction. The result was consistent peace throughout the week.
  • We found one restaurant that I was very comfortable with due to their relationship with local food sources, and we made it count. We ate an incredible meal, savored every bite, and made it a special event to celebrate rather than just another place to eat.
  • By eating at our condo, we eliminated the time driving to and from restaurants and waiting for elaborate dishes to be prepared. Instead, we spend more quiet time together, and we were able to eat our meals on a cozy screened-in porch. It was relaxing and romantic, and left us more time to spend gazing at the beauty of the ocean.

For the first time, I feel like I was able to truly rejuvenate during my vacation. The key for me was this: I had to let completely let go of my traditions and habits related to food. Giving up my previous relationship with food has allowed me to focus on what truly makes me happy, and I am quickly learning that my happiness has NOTHING to do with what I am eating!