After years of seeing specialists, I would never have thought that adjusting my diet would have such an impact on my life.
I’m 25 and was born with Primary Ciliary Dyskinesia. It is an incredibly rare, genetic condition that primarily affects the respiratory tract. I suffer from chronic lung, sinus and ear infections, to the point that I now wear hearing aids. I’ve had 16 surgeries (sinus and ear-related) and I visit my Ear, Nose and Throat (ENT) doctor every 3 weeks. I’ve been on so many medications over the years that it’s affected my digestive system, causing me to suffer from extreme bouts of nausea, acid reflux and I have woken up asphyxiating on my vomit several times in a night.
I’ve visited countless doctors and always keep anti-nausea medication by my side. I have to be careful about how much I eat, because by the end of the night I was usually throwing it back up or trying really hard not to.
Then, I heard about Whole30. I figured I would try it because at that point I had nothing to lose and I desperately wanted to stop feeling so sick to my stomach all the time. I got all of the Whole30 books for Christmas and spent the following few weeks researching, planning and educating myself on how to make the thirty days as successful as possible.
The first week started off well, until I came down with a nasty respiratory virus. To most, this seems minor, but a cold can easily put someone with PCD in the hospital. Thankfully, my symptoms were gone by Day 7, and with the help of my amazing husband, I stuck to my original plan.
On Day 9 I visited my ENT doctor and she inspected my sinuses and ears. I mentioned that I’d just been very sick and she was astonished! Since she began treating me 13 years ago, I’ve never had a cold that didn’t snowball into a bacterial infection, requiring at least three weeks of high powered antibiotics (sometimes more, and through a PICC line). She said the inflammation was almost entirely gone and that she hadn’t seen my sinuses ever look so good! She was especially excited because she likes to take a more functional approach to treating me when possible. When I didn’t need to go back for my regular three-week visit, she was over the moon.
On Day 15, I went for my checkup with my sleep doctor because I also have type two narcolepsy (without catalepsy). I filled out the usual surveys he has me do every six to nine months, and my Epworth Sleepiness score was the lowest it has been since I began seeing him about five years ago. I have suffered from un-diagnosed narcolepsy from a very young age, and it worsened when I was finally diagnosed in high school. Since then, I’ve taken various stimulants to help keep my body semi-functioning and to get me through each day. Obviously I don’t like taking these types of medications because I feel like the long-term effects on the brain can be significant, but it’s my only option.
After this visit, my doctor informed me that I could begin to lower my dose and measure its effect. Because of that and the amount of energy I’ve regained, he stated that he plans to mention Whole30 to his other patients, believing that there is definitely something to be said about my results.
I am beside myself with how my body has responded to a simple (yet intense) shift in my diet. After so many years of seeing specialist after specialist, I would never have thought that adjusting my diet would have such an impact on my life. I simply can’t imagine going back to the way I felt before! I have control over what and how much I am eating. Recognizing this freedom and strength to say “no” is not that difficult when I acknowledge how it will make me feel, and I never want to feel like that again.
After completing Whole30, I am motivated to share this program with everyone I can. It has changed my life in so many ways. My mentality about food has shifted. I now look at food as fuel and as my body’s first line of defense. I know what foods trigger inflammation in my body and how to still enjoy them in moderation. As someone who suffers from a lifelong progressive illness, I know that Whole30 is not going to cure me, but I believe I learned enough from the 30 days to help maintain my health and keep my PCD from progressing as rapidly as it once was over the duration of my lifetime. – Ashling