Hello…I’m back. Yes…I’m still doing my “30 Days of Helping 30 Celiacs“. I’ll continue with that series tomorrow.
I just needed a bit of a break for a couple of reasons.
First reason…I got gluten-whacked 10 days ago and it got the best of me. Long week to say the least.
This time, it hit me mentally really, really hard. How hard? In the past week, I have 1) inadvertently left my car running while I went food shopping. The crazy thing is when I parked my car, I knew there was something I should do besides put the car in park but just couldn’t think of it; 2) Used the women’s room in a public facility that I have been to numerous times. I realized it half-way thru. Luckily, no one came in; 3) Was so agitated that Mrs. Dude had to warn the Dudettes to give me space.
There was more, lots more, but you get the point. I was a mess.
Second reason…I was angry. Angry at some in this community who only seem to care about themselves and not about the celiac community as a whole. It’s that “if it doesn’t affect me…why should I care” attitude that seems to be permeating this country that drives me batty. I have a real hard time with people who lack empathy and compassion and it simply got the best of me last week. And yes, I’m sure the fact that I was glutened heightened my anger.
So I decided to unplug for a few days to heal my body and my mind.
But I did want to revisit the Jimmy Kimmel issue and why fighting the jokes matters…it definitely matters.
I’ve already spoken my peace. But I want to bring in a few other strong voices. These are three powerhouses in our community and if nothing else, it validated how I and many others in this community are feeling about the gluten-free jokes.
1) Gluten Free Girl Shauna Ahern is an incredibly strong voice in our community (and is also 100 times the writer I’ll ever be). She wrote a passionate post last week called “Celiac is No Laughing Matter”. Please read it here. It says everything that needs to be said about why the jokes must stop.
2) Jennifer Esposito was on Fox & Friends last week with fellow celiac E. Hasselbeck. Here is the video. At about 1:30 in, you see her explain why the jokes need to stop. My continued kudos to Jennifer for using her platform for the greater good.
3) Our very own Irish Heart knows I’ve been struggling and knows that I’m also beyond frustrated with the jokes. Sensing I needed a break, she sent me the following to use on the blog. Irish…as always…you rock!
It is Celiac Awareness Month, but you may not know it because there is no mention of it on the news. It does not get the air time that other conditions and diseases get.
Why? That’s easy…there’s no money to be made off it. There are no medications that big pharma can throw at it.
If it weren’t for our own Jennifer Esposito, it would not have even merited a mention on television at all this week. I found one short article on the internet about it this morning…and it was enthusiastically entitled “More options for the gluten free!”. It showed a picture of a vegetable stand.
To all the GF diet haters and the scoffers, I have something to say.
I do not “do” a GF diet just because I want to 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.
Maybe that also sounds “dramatic” or “annoying” to you, but my family and friends (and GI doctor) can tell you just how dire things were before diagnosis.
But it’s not just me: I could relate dozens of stories to you that illustrate how devastating this disease is.
So many wonderful people I have met the last few years have stories just like mine: LisaC, Barbara, Heidi, Heather, Ada, Neroli, Trudy, Colleen, Laura, LisaH, Jess, Karen, Arlene, Brenda, Sylvia, Camille, Sherry Lynn, Jane, Kathy….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 GF.”
We can all tell you this: over the course of 10-20 years, were were diagnosed INCORRECTLY with the following ‘syndromes’: IBS, GERD, Fibromyalgia, Chronic fatigue. Some of us also heard these words too: lupus, MS, Lyme disease, rheumatoid arthritis, spondyloarthropy, Epstein-Barr.
Doctors were stumped, so we were left to suffer. We spent thousands of dollars searching for answers to what ailed us and getting none….For years.
Then, many of us developed thyroid disease, liver, kidney and adrenal dysfunction, severe anemia, bleeding disorders, heart disease, Sjogren’s, Raynaud’s multiple food and chemical intolerances, MCAS.
We suffered multiple miscarriages, infertility (some of us 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, lymphodema. We lived in unrelenting, excruciating pain. Most of us had ataxia, burning skin and bones, and parasthesia.
We were given anti-depressants, anti-anxiety meds, tons of pain meds and crap drugs like Lyrica–all of which causes more side effects and 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 — 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 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 it really was not reversible, despite strict dietary compliance.
Celiac comes with a lot 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 3 years in painful physical therapy rehabbing my muscles. I am always in pain. It took me nearly 15 months to start seeing real symptom – resolution. But I am not complaining. I am thrilled to know what was killing me. I take no medications 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.
Still think we’re being “too sensitive” about this issue? Then, frankly you’re either thick as a brick or you’re totally lacking in compassion.
We (and I mean celiacs, those with gluten sensitivity, various AI conditions) get so tired of defending the gluten free life we lead. Why should we have to? Because people who scoff 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.
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 life-saving. Without it, I would not be here writing this message and if going GF is perceived by some as annoying or trendy, then I proudly remain “the most annoying and trendiest person alive.”
Thanks tons Irish. And THIS is the message that we are trying to get out there. That our condition is not worthy of the jokes and the scorn. And the more people joke about the fad, the more our community will continue to suffer. It really IS that simple.
Please…everybody…let’s put the community FIRST and ourselves second. In the end, we’ll all benefit.