Walking back to my desk after lunch, I carried my afternoon tea in one hand and a granola bar and mobile phone in the other. My headphone cord which was plugged in to my mobile swayed with my steps as I walked. I have always enjoyed biology and medicine, so the podcast The Gluten Free RN was right up my alley. Each episode was not too long, usually 20-30 minutes, and I liked the way she talked about her own experiences and clearly explained the medical concepts in each episode. Even though the podcast episodes did not have to be listened to chronologically, I had begun listening to the podcast at the beginning, and had been listening to a couple of episodes each day since then.
I sat down at my desk as I listened to episode 27. The topic was gluten and blood sugar. I remember thinking that it was interesting, and that there might be a few people in my life that I could share this with. At the end of the episode, I let the podcast player continue to play the next episode, number 28 The Relationship Between the Respiratory System and Celiac Disease, as I continued to work at my desk.
Now, imagine the surprise of unexpectedly heard someone in your headphones describe the most horrible event that you thought only you had experienced or went through. I stopped my work and looked around wide-eyed, I am sure my jaw was on the floor. I instinctually gripped the sides of my desk as she continued to speak. I stopped the podcast and looked around again. My world had just changed. I was no longer the only one. She was speaking about what had happened to me, and there were others like me! It was a profound moment.
I had to go back and replay the podcast multiple times. I listened closely. I paused the podcast again and looked around. Everything was still the same, but everything felt different. I wondered, ‘Did I hear that right?! Was the podcast really talking about how there was a way to stop the lungs from bleeding? My lungs bled! I have the diagnosis of idiopathic pulmonary hemosiderosis too! If this nurse knows about it, why wasn’t I put on a gluten free diet? Maybe I have Lane Hamilton Syndrome. Sign me up!!’.
In my 20s, I had experienced a sudden lung bleed that almost killed me. For more details how it all went down, please read my earlier blog post. It was because of this lung bleed that I was given the diagnosis of idiopathic pulmonary hemosiderosis (IPH). I believe the hydrostatic pressure of the water around my body and lungs is what caused the bleed to occur. After a clear x-ray several months after my bleed, no medical advice was given other than, ‘You’re young and seem fine now, good-bye!’. Since then, to mitigate the stress and potential damage of another lung bleed, I have avoided being on or near the water. Even while wearing a life jacket in a motorboat, or travelling via ferry, being near water has been deeply terrifying and I tend to cope by dissociating to some degree until I reach dry land again.
Thankfully, since then, and at least to my knowledge, my lungs have not bled. However, there has never been a guarantee from any doctor that I could not or would not bleed from my lungs again, either while in water or just walking down the street. Finding acceptance in the uncertainty of a diagnosis of IPH has been challenging. Besides not swimming and avoiding being in situations that put me on the water, I have really felt powerless to prevent or know how to stay healthy or ahead of IPH.
So this podcast that talked about gluten and IPH was like a ray of light in to a very dark room that I had been living in for a very long time. I needed to find out more.
Gratefully, my amazing lung specialist had me tested for gluten allergies when I first became her patient several years ago; I had tested negative. Since listening to the podcast and finding documented medical papers on Lane Hamilton syndrome, I began looking for and found several recent medical papers discussing IPH and Lane Hamilton syndrome and excitedly shared my discovery of IPH with my specialist; I was re-tested for gluten sensitivity, and my test was still negative. Most recently, I purchased a 23andMe kit and I did test positive for one of the two the genetic variants they measure for celiac disease (HLA-DQA1).
I realize that IPH is not as straight forward as my blog post makes it sound, and that like the body, complex systems and multiple factors are at play with any disease and healing. For those on their own journey, I want to say that dairy and mold have also been discussed in the IPH literature as well. Here are some of the documents I found about IPH and Lane Hamilton Syndrome:
Coincidence or connection? A patient with concurrent Lane Hamilton Syndrome and idiopathic membranous nephropathy
Association of Celiac Disease With Idiopathic Pulmonary Hemosiderosis; Lane Hamilton Syndrome
Lane-Hamilton Syndrome With Respiratory Failure: A Case Report
Comparative Analysis of Adult Patients With Idiopathic Pulmonary Hemosiderosis and Lane-Hamilton Syndrome: A Systematic Review of the Literature in the Period 1971-2022
Idiopathic pulmonary haemosiderosis revisited
So, even though I had been enjoying the standard North American diet for my entire adult life and had negative celiac blood tests, given my diagnosis of IPH and confirmation of a slight genetic predisposition for celiac disease, I wanted to fully explore if a gluten free diet might protect my lungs – even if it was only going to help a little bit. I found a nutritionist and naturopath who helped me make sure that I was still getting all the nutrients and calories I need to maintain my health while changing my diet.
I also recognize that if my body has not been able to process gluten in a normal way, that there has probably been a bit of damage done (I’m in my late 40s now), and that it will take time to heal or maybe scarring in my lungs may be too extensive to repair at this point in my life. But the potential positive impact a gluten free diet might have on my lung health far outweighs those considerations. I am willing to forever yearn for a flaky butter croissant if it means my lungs may become more resilient or less susceptible to a bleed or major damage. I have to try if it means giving my lungs a fighting chance.
For those of you who are reading my post; I encourage you to keep looking for your own answers, they are out there. Seek out support and share resources. For me, the online community has been a life line during the pandemic with groups like the IPH support group, and the Canadian Pulmonary Fibrosis Foundation and Pulmonary Fibrosis Foundation both offering virtual support groups. I continue to work from home and my plan is to continue with my story medical story here on this blog soon. Stay tuned to find out if Moe is still around….
Image by Aliko Sunawang from Pixabay
2 thoughts on “Listen”
Your research about your own health is helping others Keep on being an advocate for them and more importantly for yourself.God bless you ❤️
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Thank you Gloria!