My Story (Part I): Childhood Edition

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My Story: Part I (Childhood Edition)

Were you ever sick consistently as a child?  Have you ever wondered if things like diet, the chemicals or toxins you may have been exposed to, or genetics played a part in your journey to autoimmune disease?  Well, these are all questions I’ve been asking myself for years.  I may not have the direct answer for this; however, I do have my own personal experience as well as the experience of my own son and family to form my own opinions.  Let’s learn more about my childhood and see what you think!

If you would like to read where this series started, check out my first post here.

My Own Personal Childhood

Currently, I have had a total of 14 surgeries (and counting), mostly due to autoimmune disease. In addition, I have been through more endoscopies, colonoscopies, x-rays, MRIs, CT scans, bloodwork, and other tests than I can honestly remember. When trying to track down old medical records, I find myself accumulating a dictionary-sized preview of my 25-year battle with health problems.

You see, my journey began when I was only 8 years old. At the time, I suffered from constant nausea, gastrointestinal pain, and regularity problems. I was sick from school on a regular basis and my pediatrician could not figure out what was wrong with me. As supportive as they were, my parents were at a loss at what to do because regardless of what pediatrician, specialist, or medical guru we consulted, the answer was always the same: one big fat question mark.

I didn’t have any normal symptoms of an easily-identifiable virus, cold, illness, or disease. No matter how many tests I endured or biopsies we acquired, everything was reported as ‘normal’ and at the time, functional medicine wasn’t even on our radar. Honestly, my parents still don’t even really know what functional medicine really is.

However, even though we couldn’t find a reason behind my constant (and annoying!) stomach issues, there was one very small detail that doctors did find that they could not ignore. At only 8 years old, I had consistent testing that showed microscopic blood in my urine. I also had started acquiring very small kidney stones that thankfully would pass on their own but left many doctors scratching their heads, brushing up on their own research, and consulting with each other. No one could really figure out why this was happening to an 8-year-old child, much less one that consistently showed signs of ‘normal’ test results.

For a while, this health issue took precedence and the stomach issues I originally was being treated for were ignored. After what felt like millions of tests, multiple trips to specialists’ offices out of town, and still no solid reason behind why this was happening, doctors eventually decided just to treat my symptoms as they happened in the hopes that we would eventually find out the cause later.

My First ‘Diet’

Once we realized that my symptoms were not getting any better (and frankly, were only getting worse) and a diagnosis might not be as easy as we thought, we felt like the tide shifted and we were starting to get somewhere with my care. Unfortunately, passing kidney stones is never fun but it was only then that doctors realized that at the time, a diagnosis may not be as important as treating my current symptoms where they were.

So, at the age of 10, I was placed on a very strict, very low-sodium diet. That meant no more drive-throughs, no more pizza, and no more sweets. As a kid, this was HARD. I mean, I had to watch everyone else eat cake for their birthday, celebrate with pizza during a slumber party, and obtain piles of candy over Halloween. And then there was me. The kid who had to measure and portion out meals, the kid who could recite product content labels better than the winner of our school’s spelling bee, and the kid who always ‘shared’ the best Halloween treats with her friends.

To this day, I still remember how much sodium is in a piece of bread (125mg) and the pages and pages of notebooks I used to keep as food journals. I remember portioning my meals out with measuring cups and only being able to eat 1/4 cup or 1/2 cup of whatever fast, quick, or boxed meal was on the menu that night.  You see, throughout these years, we never did eat very healthy or change our eating habits at all.

Instead of learning how to eat more fruits and vegetables, we just measured and portioned out servings of what I could have from what we were already eating. Instead of eliminating foods that could be harmful, I just ate them in moderation. And instead of really paying attention to my symptoms after eating certain foods, I just carried on with life as if nothing had really changed. I mean, I was only 10 so I guess I can give myself some slack but even though my ‘diet’ journey officially started here, I never truly learned how to eat right for my health.

I also remember following this ‘diet’ for YEARS and not really feeling like it helped very much. One of my most vivid memories is that of when I started high school at a whopping 90 pounds because my classmates honestly thought I was bulimic because I still got sick so often.

You see, even though I was watching my sodium intake, I never truly learned how to change my lifestyle to accommodate this diet I was on. I also still had those nagging stomach issues that no one had ever figured out from before. Constant nausea, gastrointestinal pain, and regularity problems were consistent for me and I have to admit, I pretty much got sick no matter what I ate. It didn’t much matter if I had dairy or gluten or soy. It didn’t matter if I cut out sugar or nightshade vegetables; the result was always the same.

So, for what felt like the longest time, I just soldiered on. I ate what I thought I could eat, reduced sodium intake in my diet as much as possible, and still kept getting sick regularly in the process.

10 Years of No Official Diagnosis

During this time, I still had no official diagnosis. I still followed a strong low-sodium nutrition program and I still had blood in my urine; however, at this point in time, I wasn’t passing any more kidney stones. To this day, I still incorporate low-sodium strategies into my routine and try to incorporate healthier eating habits than I did before; however, I still do not have any solid explanation for what I experienced as both a child (and now still as an adult).

One specialist told me that I might have outgrown my issues (which I didn’t because these same issues are still present today); another said it might have been anxiety-related and normal life-stress that was having adverse reactions on my body as well. I agree that there have been studies linked to childhood stomach aches, symptoms, and mental health; however,the microscopic blood in my urine and consistent kidney stones at such a young age are kind of a different story.

And within the last year, I’ve had a few doctors give me their opinions and/or best guesses to this strange anomaly as well. Heck, I’ve even done my own research and have formed my own opinions on different possibilities too. Check out this post for an update from 2018.

Regardless of how anyone feels, I know I am not crazy. I enjoyed school and looked forward to being there but ended up having to miss attending it often. I felt unreliable to my friends and always had to miss out on many childhood experiences because I could not eat or drink what healthier kids do during holidays and other activities (in moderation of course). I was always depressed, always confused, and always feeling lost in a huge world that never seemed to understand me.

I was unique and was afraid to embrace my own health journey, regardless of what it was.

Does this have something to do with the multiple autoimmune diseases and diagnoses I’ve acquired as an adult?  Did my experiences as a child leak over into adulthood?  Even though I do not have the answer for this right now, I do strongly believe my struggle with health as a child and my struggle with health as an adult is somehow connected.  I mean, how could it not be?  Even though I still do not have any solid answers (yet), I have a feeling that one day everything is going to come together and make a whole heck of a lot of sense.

So, what about you?  Do you think our health and nutrition as a child dictates how we feel as an adult?  Do you think unhealthy habits early on in life can lead to health problems and/or autoimmune disease?  I’d love to hear your thoughts!

Works Cited

Recurrent Abdominal Pain, Anxiety, and Depression in Primary Care
John V. Campo, Jeff Bridge, Mary Ehmann, Sarah Altman, Amanda Lucas, Boris Birmaher, Carlo Di Lorenzo, Satish Iyengar, David A. Brent
Pediatrics Apr 2004, 113 (4) 817-824; DOI: 10.1542/peds.113.4.817

If you’d like to look at an easier-to-read version of this study, check out this link from WebMD:

1 Comment

  1. Cyndi Henley on January 30, 2019 at 8:50 pm

    Great story. Thank you so much for sharing your journey. I’m looking forward to reading more.

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