It’s May! It’s May! The merry Morselicious month of May! May is Celiac Awareness Month and have I got a lot to say and share about the topic! It took some nudging from a few of you, my loyal readers who wrote in over the past year asking me to share my painful and humbling journey so this also serves as this month’s Dear Mo column. This is just the beginning of more to come.
Before I dive in, special thanks to my friend, Sam, for a Morselicious day trip to frolic in the Southern California Super Bloom. Disclaimer; NO poppies were trampled on by either one of us. 🙂
WARNING: one of the following photos (my infected tongue 2012) is disturbing. I decided to post it because some of you suggested it could help others who might be going through a similar struggle.
Since I was diagnosed with celiac later in life, approximately 8 and 1/2 years ago, I’m now experiencing a slew of long-term complications, including low bone quality, not to be confused with bone density. Who knew there was a difference? DXA vs TBS scans.
Note, celiac disease is one of the most misdiagnosed diseases which makes it that much more important to spread awareness.
The following are important resource links to learn more about celiac.
Please read, share, and spread the word that we are not “picky” eaters nor is this a fad diet. It is a serious health condition that can only be remedied by following a gluten-free diet, NO cross-contamination! Believe me, it can be stressful, lonely, and painful when dealing with social events including eating out with friends. There have been times I wasn’t included in social gatherings because of my dietary restrictions. And, yes, I was that kid in Kindergarten with a dairy allergy and was given Tree Sweet grape juice and graham crackers while the other kids got milk and cookies so this is not a new label for me. Remind me to share my N.D.E. in the future.
Lest I digress, yes, for people with celiac, a tiny speck of gluten can wreak havoc with our entire system. Before I was diagnosed, I would get giant blood blister/ulcers in my mouth that hurt more than a “you know what,” and often became infected. Don’t look at the next photo if you’re queasy. There were weeks, no joke, I couldn’t speak, sing, or eat without excruciating pain yet no one could figure out the cause.
My stomach would bloat to the size of an over-inflated beach ball. I went through early menopause by the age of 41, and it was pure hell, night sweats, hot flashes, vision issues, insomnia… Back then no one talked about menopause and none of my peers had gone through it so even my doctors were baffled. It took almost two years to figure out I was post-menopausal. My vitamin D levels were almost non-existent despite my taking 4000 iu daily supplements and hiking nearly every day in L.A., getting plenty of sunshine.
The uncertainty of what was happening to my body, the pain, the humiliation of feeling and at times looking like a freaky medical textbook study, only exacerbated my struggles/journey.
Once a diagnosis was discovered, I soon learned the importance of not only adhering to a strictly gluten-free diet but also cross-contamination. To this day, cross-contamination is a challenge and I find myself apologizing to people, and restaurant managers who simply don’t “get it.” Today, after the past year and a half of breaking bone after bone, 5 of 6 in my left foot, I don’t apologize quite as much. This is my life, my condition which is only safe in a non-cross-contamination gluten-free kitchen.! Yes, that’s a period and an exclamation point!
My doctor’s are still trying to find the root cause of the multiple broken bones concentrated in my left foot, all different bones at different times throughout the past year and a half. The main theory is that because I was diagnosed later in life and “glutened” for years, the damage to my body including my bones was extensive. My bone density is good but my bone quality is not. Note, I’m still undergoing tests and trying new medications to prevent future fractures. The vicious cycle is that each drug has its own set of side effects and my body has never tolerated medicine well. Alas, since I’ve tried everything holistically and will continue to eat an anti-inflammatory diet, and exercise, albeit slower and shorter walks than pre-bone-breakage, I continue to be cautiously optimistic and am integrating both holistic and Western medicine.
As I mentioned, I will continue to share more of my journey and think this is a good place to stop for now. As always, please continue to send in your questions, thoughts, suggestions, and health coaching referrals.
Be sure to celebrate your mom this Mother’s Day, May 14th, which is also the anniversary of my dear late dad. We will toast to him and Mom. I thank all of you for your continued support. Remember to take some time for yourself. Don’t underestimate the power of self-care.