Today’s post, In Defense of the Medically Necessary Gluten-Free Diet, is a guest post from my good friend Ginny Ryan. Ginny is a fellow celiac.
Since her diagnosis, Ginny has been one of the gluten-free community’s best advocates. She has helped so many navigate the initial months of living gluten free. I’m pretty sure we all remember those first few weeks and months of living gluten free and how all information and help, especially help from a gluten-free “veteran,” was welcome.
Ginny also has another talent. She usually has a way of perfectly saying what may need to be said to friends, family members, and—in some cases—even complete strangers who feel the need to “comment” on our gluten-free lifestyle. It’s hard to understand why others feel the need to comment on or care what others eat but, oh, they sure do. And not in a positive way, I might add.
When I saw Ginny’s Facebook post, In Defense of the Medically Necessary Gluten-Free Diet, which she shared for Celiac Awareness Month, I knew that I had to share it with you all. Thankfully, Ginny graciously gave me permission to do so.
By the way, I’ve shared Ginny’s personal story and other thoughts here on gfe previously in You’re Not Crazy, You’re Sick, and You May Have Celiac Disease. While there’s some overlap between that post and her post today, this overall topic is one that simply cannot be discussed too much in my opinion.
I want to give a huge thank you to Ginny for being willing to share her post here on gfe. I greatly appreciate her well-articulated defense of those of us who live gluten free for medical reasons. I believe you all will as well. And now I yield the floor to Ginny …
In Defense of the Medically Necessary Gluten-Free Diet
by Ginny Ryan
I do not “do” a gluten free diet just because I want to be “trendy” or annoying or to lose weight or because it’s the “diet du jour.”
I do it because it is the only thing that saved my life.
I have Celiac Disease.
But it’s not just me: I could relate dozens of stories to you that illustrate how devastating this disease is when left untreated. So many wonderful people I have met during the last eight years have stories just like mine: Lisa, Barbara, Heidi, Heather, Ada, Neroli, Trudy, Colleen, Laura, Jess, Karen, Arlene, Sylvia, Camille, Sherry Lynn, Kathy, Shirley, Shannon, Ken, Erik, Peter, Abby, Alice, Martha, Charlotte, Marge, Kippy, Marzena, Kim, Kerri, Brenda..….
Oh yes, I am putting names here because they are REAL PEOPLE and not just the scorned unnamed who are always lumped into the “annoying people who eat gluten free.”
We can all tell you this: over the course of 10-30 years, we were diagnosed INCORRECTLY with the following ‘syndromes’: IBS, GERD, “nervous stomach”, Fibromyalgia, Chronic Fatigue.
Some of us also heard these words too: lupus, MS, Lyme disease, rheumatoid arthritis, spondyloarthropathy, Epstein-Barr, etc.
Doctors were stumped, so we were left to suffer. I wish I had a dollar for every time I heard the word “idiopathic”. We spent thousands of dollars searching for answers to what ailed us and getting none … for years.
In the meantime, many of us developed thyroid disease; liver, kidney and adrenal dysfunction; severe anemia; bleeding disorders; heart disease; diabetes; Sjogren’s; Raynaud’s; multiple food and chemical intolerances, MCAS and cancers.
We suffered multiple miscarriages, infertility (some, like me, were never able to have children at all), very early menopause, endometriosis, uterine, breast and skin cancer, asthma, migraines, seizures and osteoporosis. We had/have severe neck, back and leg pain. Nerve pain, lymphedema. We lived in unrelenting, excruciating pain. Most of us had ataxia, burning skin and bones, and paresthesia.
We were given anti-depressants, anti-anxiety meds, tons of pain meds and drugs like Lyrica—all of which cause more side effects and offer no relief.
None of these drugs helped because the underlying CAUSE was not discovered and certainly, these symptoms were “not in our heads” as was often suggested.
Serious insomnia robbed us our sleep for many years. We would gain weight like mad and then, most of us dropped weight suddenly. For me, it was nearly 90 lbs. in a year because of malabsorption.
We had hair loss, a devastating loss of cognitive skills, suffered vertigo, horrible rashes, and developed cancers of all kinds … you name it, and collectively, I bet we had/have it.
This disease affects people from head to toe. Every organ, every body system can become compromised.
Many people have reported to me that they lost their jobs, some had their spouses walk out because getting diagnosed took too long, and some of us almost died. Sadly, three of these women I mentioned above did lose their lives in the end (much too early) because diagnosis took too long and they had so many complications that it really was not reversible, despite strict dietary compliance.
Celiac Comes with Lots of Collateral Damage
Once diagnosed and on a gluten-free diet—the only treatment for celiac right now—most celiacs can recover in time, but not without considerable patience and time. There’s too much damage done. I have spent NEARLY 8 YEARS in physical therapy and medical massage rehabbing my muscles. I am always in pain.
It took me nearly 15 months to start seeing real symptom resolution after going gluten free. But I am not complaining. I am thrilled to know what was killing me. I take no medications now, except a tiny dose of levothyroxine and I am still alive and kicking! It takes time and enormous patience and a GIGANTIC SENSE OF HUMOR to recover.
The gluten-free diet, the treatment that saved our lives, is not a joke. It’s our medicine. We (and I mean celiacs and those with gluten sensitivity and various autoimmune conditions) get so tired of defending the gluten-free life we lead.
Why should we have to? Because people who scoff at it, ridicule it and dismiss it actually DO make it harder for those of us who HAVE to be on the GF diet. We are put in danger every time it is made the butt of a joke.
And I am not sure why this is so hard for people to understand.
The gluten-free diet is not elective for those of us with a medical necessity. It’s lifesaving.
Without it, I would not be here writing this message. And if going gluten free is perceived by some as annoying or trendy, then I proudly remain “the most annoying and trendiest person alive.”