Neil’s Healing Story (Celiac Disease)

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Neil in his workshop, smiling with grey hair and a beard

“I believe absolutely that it is in sharing the most vulnerable aspects of our journeys that we support each other to find grace and strength and healing during equally challenging times.”
~ Baden Lashkov

Living a Resilient Autoimmune Life

Like many people with celiac disease, Neil Meiskey went undiagnosed for years, and that led to a lot of damage to his small intestine. His symptoms were debilitating and impacted every aspect of his daily life. One of the hardest parts was not being able to make plans without fear that he would have to cancel. Now, after following a healing diet and lifestyle for five years, he’s starting to see some regrowth in his small intestine villi for the first time. His symptoms have also reduced enough that he’s able to enjoy the things he loves again, like skiing, motorcycling, and time with his friends and family. It’s been a long road, and there have been ups and downs along the way. He shares the details in this interview.

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What were your first symptoms? When did you learn what it was?

I started having issues in my early 60’s, but wasn’t diagnosed with celiac disease until age 68 (2018). I’m currently 73. My symptoms were bloating and diarrhea, followed by anemia. Unfortunately, I experienced a lot of damage to the villi in my small intestine by the time I was diagnosed.

Can you describe what it was like for you when your condition was at its worst?

I had major intestinal and gut discomfort and was “living” in the restroom with diarrhea for hours. This sometimes included rectal bleeding for 5 to 15 minutes at a time.

What medical treatments have you tried? What was helpful, and what wasn’t?

Unfortunately, the celiac damage to my small intestine meant that I was no longer able to absorb B12 and iron. The B12 was an easy fix, but I cannot tolerate any form of iron orally, so I occasionally go to my local VA and get iron infusions.

Other than that, I wasn’t offered any medical treatment for celiac. I studied tons though and found: Chris Kresser, Dr. Sarah Ballantyne, Dr. Amy Myers, Mark Sisson, and YOU!

Which healing diet(s) did you try, and what were the results?

In the years before I was diagnosed, I was doing my own research, and I tried the Paleo Diet first. It helped some, but I continued to have symptoms. That’s when I tried the Paleo Autoimmune Protocol (AIP), and your book really helped simplify things. Michele Spring from Thriving Autoimmune shares my celiac diagnosis, and I love her recipes. I also found encouragement through Hannah Simmons’ AIP Support Group on Facebook.

When I stick with the elimination phase, I feel pretty great, but that’s not sustainable long-term. Because I have damaged intestines, reintroductions are challenging. When a reintroduction fails, my flares can be very uncomfortable. So, I often find myself doing an AIP reset to regain my health. That said, I have been able to reintroduce a few things successfully: green beans, nut milks, baked potatoes, most spices, and occasional white rice.

I recently got good news, though! My gastroenterologist during my last colonoscopy finally saw some regrowth of the villi in my small intestine. There was no regrowth for the first four years, so I didn’t know if this would ever happen. The regrowth is helping the anemia (I don’t need iron infusions as often). Maybe in time it will also help with reintroductions.

Beyond autoimmune symptoms, did other areas of health improve with dietary changes?

Yes, I have more energy and feel less depressed about my condition. When my symptoms were at their worst, I hated having people compromise plans or wait for me, a constant battle. Now that my symptoms are better, that happens less often, and I just feel more free.

What other things do you do outside of diet to support your health and healing?

I do my best to exercise regularly, try to get 7.5 hours of sleep per night. At age 73 and having a one man remodeling business, those two items are a challenge. I am lousy at relaxing. Active rest helps – skiing, motorcycling, hobbies. I’m also trying to read more at night (when I can stay awake). 😉

What role has medication played in your autoimmune journey?

Prior to my celiac diagnosis, I suffered from GERD and was prescribed Nexium for 12 years after my throat scarred so badly I couldn’t swallow. I finally forced my physician to prescribe low dose Omeprazole instead of Nexium, and then I found a new gastroenterologist (one of her specialties is celiac). She said both of those medications were harmful and I never should have been on them so long. She helped me wean myself off Omeprazole. Now, since I do have a faulty epiglottis, I take Carafate before I eat to coat my throat in case acid goes where it shouldn’t.

What symptoms still remain?

I still go to the bathroom more than I like, but my stools are usually “correct”. And I have occasional bloating and tummy discomfort, but it’s nothing compared to my symptoms at my worst. Usually this happens if I do reintros mindlessly or eat too much at dinner and/or eat too late. I also developed anemia due to the damage to my small intestine, and that can make me tired. It’s a challenge.

Who supports you in your healing journey?

Me! My daughter is also supportive to a degree (but she’s on her own, married, and lives two hours away). My wife hates change and is somewhat helpful but overall not “into it”.

What’s the hardest part of maintaining a healing lifestyle for you?

My schedule is a problem. I usually falter when I’m feeling very tired or hungry, and I don’t always feel like cooking or doing big meal prep ahead of time. I don’t really miss any foods all that much. I see food as fuel. I just wish that after work when I’m feeling tired, I could just stop somewhere and grab something to eat without worry. There is on decent restaurant locally but it’s quite expensive. Social events are tough, so for the most part I avoid them. I just recently started eating before I go, then I just drink water when there. I do have a few friends that go out of their way to be helpful when I am invited to their homes for dinner, which is pretty amazing.

What advice would you give to people with autoimmune disease who are just starting to consider diet and lifestyle changes?

Don’t hesitate, don’t put it off……all the hard work and diligence reaps huge rewards. YOU CAN DO IT!!!

What does autoimmune resilience mean to you?

When I screw up by accident or negligence, I pick myself up, dust myself off and get back to it!

Neil downhill skiing in Colorado

Neil doing one his favorite activities!

Other Healing Stories

This is part of a series of autoimmune success stories. Click here to see the full list. They are also a regular feature of my podcast: Phoenix Helix.

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