My Health Journey

The other day I put up a poll over on Instagram asking for feedback on what you want to hear about most. The overwhelming answer was my health and allergy journey. Well, you’re getting your wish! Just remember what you asked for 😉 This is a long one, if you want a video version (though this is more organized) you can watch me tell my story on YouTube.

But First, a Disclaimer

I’m going to say this right now, every person is different. My journey is my own experience and we all have different paths. My goal of this article is that I hope to empower you to be your own advocate. Doctors are very, very needed and are still an important part of my journey, but I had many that failed me or diagnosed and treated the symptoms instead of the underlying cause. I will touch on that throughout my story, but my biggest hope is that you learn that no one knows your body better than you.

Someone who sits down and listens to symptoms for 15 minutes might be able to point you in the right direction, but it’s still up to you to educate yourself on your own health, what it means, and how to best support your body.

My other disclaimer, I am not anti-medication. However, I do not believe in using medication to treat symptoms while ignoring the possibility of attempting to get rid of the underlying cause. This is an important part of my story and I feel it’s important to state that up front. It will make sense later, I promise!

The Beginning

My journey began when I was just a youngster. It started primarily with stomach pain, but there were other symptoms I will spare you the details of. Let’s just say it wasn’t pretty. Cue a whole ton of visits to the doctor and by age 8 I was diagnosed with Chronic Ulcerative Colitis.

I can distinctively remember, even 27 years later, the effect living with this illness. Perhaps I will write another post on the mental health aspects of young children living with chronic illness and the lack of support I received in that regard, but for today, I want to focus on my diagnosis.

Alright, so there I am, this little 3rd grader suddenly very unwell. I was no longer allowed to attend field trips. Trips to Girl Scout camp suddenly came with a list of restrictions and rules. I was put on medications to try and sooth the inflammation (Azulfidine) which came with restrictions to stay out of the sun leading to more time inside and less time running around the neighborhood with friends.

The Azulfidine wasn’t enough. I was also taking over the counter medications to help manage symptoms to make it through the day. And then there was my least favorite: Prednisone. I think Prednisone is a medication that most people are familiar with. It’s a steroid with a long host of possible reactions from taking it. It’s not a medication that’s supposed to be used long term and not something that can be started and stopped. Once you’re on it, you need to gradually come down on your doses before stopping completely.

My medications needed to be taken with food and between the extra snacks and the steroids I gained a lot of weight. It wasn’t helped that I was told physical activity could also increase symptoms (oh the things we believed!). While this helped foster a love of reading, it did nothing to improve my health.

Despite all the things we were doing, my symptoms were still out of control. I believe it was at this point (remember, this was a long time ago so some of the timeline is a little fuzzy to me) that there were a few food trials performed.

I remember bits and pieces of this appointment - like sitting in the office and drinking milk - but not much else. I know that after that visit we avoided all forms of dairy for 6 weeks. After that point, I was diagnosed with lactose intolerance, a mild peanut allergy and a mild egg allergy. We were not told to avoid any of those foods. To manage the lactose intolerance symptoms, I was directed to take enzyme tablets.

This is a recurring theme you’ll notice through my journey. Many of my doctors were quick to prescribe a prescription or over the counter medication to manage my symptoms. Not once was I told that the “cure” for my lactose intolerance was to avoid dairy all together. And remember, during this time I had Ulcerative Colitis which was still wildly out of control. Dairy is a food known to cause inflammation and I had a diagnosed intolerance and yet I was encouraged to continue consuming it.

So I did! I mean, the doctor told me it was ok, right? People don’t question doctors (especially nearly 30 years ago) so we just went along with it.

And I Continued to be Sick.

So sick, that by the time I hit the 6th grade, I missed over 100 days of school. My body was addicted to Prednisone and was unable to be in remission without it leading it to no longer be an option and the doctors were considering a colectomy (removing a portion of my intestines). As a last-ditch effort, I was prescribed Mercaptopurine. This medication is a drug used with chemotherapy to treat certain types of Leukemia.

I almost don’t know where to start with this one. If you look up the drug, you will see that it does list Ulcerative Colitis as a condition it is used for. I don’t know when they first put this into play, but when I was first put on it, my doctor made it seem like it was a newer option. Based on the reaction of my current gastro doctor when he heard I had been on it, I’m not sure it’s very widely used for that application.

There is a laundry list of side affects for this medication – including symptoms that mimic my Colitis. One of the most serious issues is that it suppresses your blood cells. Again – this is a cancer drug. While I was on Mercaptopurine, I was monitored weekly to ensure my white blood cells weren’t dropping dangerously low.

Because of the damage this medication can cause on your body, it’s important to continue monitoring bloodwork, not just for the blood cells, but other markers as it can damage your liver and cause other complications.

Despite all of the havoc it can cause, this medication finally kicked me into remission.

I remained on it through middle school and into high school. I was finally starting to feel somewhat “normal”. Though, looking back, I was still very sick, just not as sick as I had been. After graduation I decided to discontinue medication. Was this the right choice? I’m not sure, to be honest. I wasn’t in a place to really understand the implications.

I was going to college, working multiple jobs and mostly managing things. I still had flares, but they weren’t bad compared to my childhood and I was better able to manage the often present pain. By this point I had developed a pretty strong tolerance and just lived with it.

Life went on and I tried to block out any thoughts of my condition. I was in a new environment where people didn’t know me as “the sick girl” and I wanted to keep it that way.

Discovering More Allergies

I’ve talked a lot about my Colitis and touched on my intolerance and early allergies. Not much changed in terms of diagnosis or my day to day life until one day when I was 21 and working in a preschool classroom. I had brought my lunch and inside was this beautifully ripe peach that I had been salivating over all day.

So imagine my surprise when I bit into it and a few minutes later my lips swelled up, I had some hives and my throat began to tighten. I was young and I didn’t know what to do, so I just drank some water and sat down. I was experiencing multiple severe reactions and that experience could be considered an episode of anaphylaxis because multiple symptoms were involved.

Not understanding exactly what was happening because I had been poorly educated about allergies, I did not know exactly how severe the outcome could have been. I got lucky that after an hour or so my symptoms subsided.

After that experience, a lot of things fell into place. When I ate certain fruits, I was used to experiencing itchy gums and throat, but I didn’t realize that was abnormal. At this point I made an appointment with an allergist.

This was not as helpful as I was hoping it would be. He informed me I have Oral Allergy Syndrome which is related to seasonal allergies. OAS is something that still is not well understood by many medical professionals. The advice I was given by this doctor was to ignore it because, “OAS cannot cause anaphylaxis and no wants to live the allergy life.”  

I wish you could see how hard I’m rolling my eyes right now.

It took another ten years before I had an allergist confirm that, yes, it actually can cause anaphylaxis in about 5-10% of people who have OAS. The misinformation I was given still causes me to fume to this day. I cannot believe the lack of compassion and the huge amount of bad advice I was given by that allergist. He did prescribe me an Epi-Pen to appease me, but that was it. I never saw that doctor again.

If I had to pinpoint the first turning point in my medical journey, that appointment was it. I ate a food, it caused a reaction. Common sense - despite what I was told - lead to the conclusion I should to stop eating the food. And so began the process of listening to my body. Any food that had previously caused the itchy gums and throat was now on my “no” list. This includes apples, peaches, pears, plums, apricot, nectarine, plum, kiwi and cherries.

Thankfully, I have plenty of other fruits to consume that don’t cause a reaction. I have no problem leaning into those and at this point I don’t miss those fruits. It makes it tricky since apples and pears in particular are commonly used as a sweetener, but I’ve adapted.

Being Your Own Advocate

I was 21 when I received my OAS diagnosis and had some revelations about taking charge of my health. It was the first time I had ever gone against what a doctor was recommending.

This mindset that a doctor does not have absolute say in how I treat my body and that I have the ability to say no was slowly forming. When I got pregnant with my daughter at 24 my husband and I took a Bradley Baby class. It was one of the best decisions we ever made.

It woke us both up to the empowerment of being informed and being able to be an active participant in medical decisions versus just doing what you’re told.

This proved to be a great tool when my daughter was born as my hope for an unmedicated, natural birth was dashed when I spent over 48 hours in labor and ended up in a c-section. But I’m getting off topic.

The Allergy List is Growing

My daughter’s birth is relevant, because it brings us to the next phase of my health journey. During my pregnancy I developed an allergy to tree nuts (coconut is still ok). One time I had picked up a different variety of my normal bread brand and made a sandwich. I was only one bite into it when I started breaking out in hives. I went home after and looked at the label. The ingredients included a statement, “may contain hazelnuts and walnuts.” Great. I had already suspected nut allergies and had been avoiding them after I didn’t feel well from eating them during pregnancy.

Pregnancy does weird things to the body and it’s actually somewhat common for allergens to change during that time or after birth. There is so much we don’t understand!

After my previous experience, I didn’t feel the need to go back to an allergist. I had identified foods that made me sick. I also had an action plan that I had developed with my GP for my OAS allergies. So I kept close track of the foods I ate and the noticeable reactions I had. I added to the list any time I could pinpoint a single food as an allergic reaction.

But I was Still Sick

Throughout all of this, I was still experiencing regular symptoms from my Colitis. I managed it the best I could and accepted it as normal. In fact, I rarely stopped to think of it. When my husband mentioned one night as I laid on the couch feeling like I was going to be sick after dinner that I never actually felt well, it actually caught me by surprise. This was just my life, but to him it was unusual. I promise I’ll come back to this, but it’s an important reminder. When living with chronic illness, we often lose sight of what’s “normal”.

There’s another reason I mentioned my daughter. Kiddo, and I love her to pieces, was an extremely colicky baby. In an effort to try and find something to give her relief, I looked to my diet since I was nursing. I decided to experiment with removing foods that could potentially be upsetting her. Speaking with her pediatrician (who is amazing!) I decided to start with wheat and gluten. I committed to removing it for 6 weeks.

Hallelujah! We’re Getting Somewhere

Imagine my surprise when both of us began to feel better! Her crying decreased significantly and I found my Colitis symptoms eased significantly. They weren’t gone completely, but I was no longer feeling sick at every meal!

I couldn’t believe that one change could make such a difference, but I still don’t think I fully grasped the impact it was having on my system until a couple years later when I decided to eat two, small cheese blintzes when we were at a restaurant for a family members birthday.

Did they taste good? YES! Was it worth it? Goodness, no! I was so incredibly sick for the next three days.

I think that’s one of the biggest things I’ve noticed if I compare my allergies to my intolerances. My allergies, thought scary and potentially more severe, usually have symptoms that last at most a couple hours. My intolerances make themselves known for days to weeks after ingestion.

I did speak to my doctor about getting tested for celiac, however they told me the only way they would test is if I had eaten a good amount of gluten in the last 24 hours. So, let me get this straight… the only way to test to see if a food makes me sick is to eat that food? No thanks. I declined the test and continued on my gluten-free life.

Fast forward a few more years, and at the age of 30 I decided to give up animal products. It’s a long story (and this is long enough) but basically the goal was to phase them out slowly by eating only 1 meal with one animal product per day (ex, chicken, but no egg or dairy). Well, I had meat the first four days of this and then I had dairy the 5th day.

That was the day I came face to face with exactly how bad my lactose intolerance was. I was so sick. I remember laying curled in a ball wishing to be sick because the stomach pain and heartburn was so intense. It was awful.

After giving up dairy for good, I noticed other things. In the first week I lost 2” of bloat around my waist. A few weeks later, I noticed these bumps I had on the back of my arms for as long as I could remember had disappeared. I had actually asked the dermatologist about it. She wanted to prescribe a cream that would burn off a layer of skin in hopes it would grow back healthy. It was never once mentioned to me that it could be a skin reaction or that changing my diet could help get rid of it.

So that began my dairy free life. Honestly, at this point I don’t miss it at all and wonder why I didn’t give it up sooner knowing my history of lactose intolerance. I just had never experienced the relief I could have without it.

Almost There!

So now at this point I’ve added two more things to the list. I was feeling better… most of the time. My Colitis still seemed to flare occasionally, especially in the fall and winter. I had my suspicions on what may be causing it, but I tried to be responsible and see a gastro doctor to be sure.

Now, I hadn’t actually been to the doctor for my colitis in about 8 years at this point. The last time I had gone was while I was having a flare that was brought on by taking antibiotics. I had been dealing with Colitis for over two decades at that point, but off medication for a significant amount of time. The doctor was no help and actually handed me a “welcome to life with Colitis” brochure. It felt like such a slap in the face.

I figured I’d try one more time, or at least get another colonoscopy to see where things were at.

I’ll say this doctor wasn’t much better than my last. He seemed to have determined what the scenario would be before I even had my appointment. This was after one virtual appointment and was our first time meeting in person.

I had my procedure and was informed that my Colitis was severe, a 4/5 on the scale that’s used as an industry standard. I was told to go back on the medications I had been off of so long.

In my gut, I suspected another intolerance. I gave my theory to the doctor and he all but laughed in my face and said he can’t force me to take medication, but my suggestion isn’t going to work.

I left with the agreement I would remove the food for a year and have another colonoscopy to check for changes. If it didn’t work, I would look at the possibility of going back on the meds.

Again, I’m not anti medication. I am anti medication when there’s another, natural solution that doesn’t have potential for damaging side effects.

So, I came back in a year and was retested. The doctor came out while I was in recovery and asked, “What did you do?” and I informed him that over the last 12 months I had completely given up sugar (I do eat coconut sugar and maple syrup, but no cane sugar or corn syrup, etc.). He looked at me and shook his head. “Well, whatever you’re doing, keep doing it because I don’t see any visible traces of Ulcerative Colitis.”

Not going to lie, I cried a little. It was such a validating experience. This doctor, who after meeting me for all of 15 minutes had tried to put me on medication, was admitting that food was causing this reaction in my body.

Kuddos to you if you’re still following along. This experience has been a long one, and one where I am still learning every day. As it stands, I feel better now than I ever have. I truly don’t feel the effects of any of my diagnosis. I know what to eat feel good, and what doesn’t. I’ve managed to stick to 85% whole foods and 99% cane sugar free. I’ve had a couple bites of cake for my daughter’s birthday, but that’s pretty much it. I know sugar is poison to my body and it’s not worth the taste. Dairy and gluten (along with my allergens) I completely avoid 100% of the time.

It took 25 years, but I finally found my body’s neutral state and I’m going to do whatever I can to keep it there.

I have discovered so much along this journey about advocating for myself, being confident in questioning my doctor, and taking charge of my own health.

If you’ve got a similar experience or have any questions, I’d love to hear from you! Either comment below or visit the contact page to send me an email.