I’ve not been feeling 100% myself for the past few weeks. I’m not sure what I ate along the way, but I know I’ve eaten something that doesn’t agree with me, and definitely was not gluten free. I’ve got my usual symptoms (which I’ll spare you!) but I’m not 100% myself.
Between that and some folks in my office who just don’t “get it”, I realized that what I deal with is more then just a gluten intolerance or a gluten free diet. And I need to get braver and explain it better that what I have is called Celiac Disease.
So many people think I’ll just keel over if I eat gluten, not realizing that it’s long term health risks that affect more, not keeling over on the spot if I eat gluten.
So with this, I am making the formal announcement, and promise to get better at explaining to people that “I have Celiac Disease. It’s a serious autoimmune disease and by not maintaining a gluten free diet, I am putting myself at risk in the future for additional long-term risk for intestinal damage and various forms of lymphoa. “
I will work hard to explain that people with Celiac are more susceptible to forms of lymphoa so why should I take the risk? I work VERY hard at trying to stay safe, and I can tell when I’ve eaten something I shouldn’t, so why even take the chance with one crumb and put my body at harm.
Other long term affects from not following the diet include:
- Iron deficiency
- Anemia
- Osteoporosis (yep, I’ve got that one!)
- Vitamin K deficiency associated with risk for hemorrhaging
- Vitamin and mineral deficiencies (Got that too – a Vitamin D deficiency for which I’m on weekly Vitamin D supplements)
- Central and peripheral nervous system disorders
- Pancreatic insufficiency
- Intestinal Lymphomas and other GI cancers
- Lactose intolerance
- Neurological manifestations
- Dermatitis Herpetiformis (DH)
- Insulin-dependent Type I Diabetes
- Thyroid Disease
- Systemic Lupus
- Erythematosus Liver Diseases
So while they may be sorry they asked “What happens” or “Will you keel over?”, they’ll hopefully get a better understanding of what Celiac Disease is.
GFS
Sorry you’ve been glutenized! It can sure take the fun out of holiday overeating! Hope you’re feeling better by Christmas.
I’m hoping to bake some of Karina’s Coconut Chocolate Nirvana Bars today. No chocolate, no tree nuts. I hope peanuts and gobs of coconut will do. And I’ve baked some lame cookies to use for the crust of my Christmas Eve Key Lime Pie. It’s a short list of treats, but a nice break from my cobbler-of-the-week.
Merry Christmas, Steve!
Hey,
You said neurological issues…could you get seizures?
I am not a doctor, so I am not 100% sure. I am going off of what I’ve read. Like anything you read online, you should do research and consult a physician.
I am sorry, Steve. I hate that. I have been having some isssues lately myself. It’s frustrating because I can’t put my finger on the culprit(s). Like you, I will NEVER knowingly put a crumb of gluten in my body. I really don’t get the folks who cheat or are tempted. Like someone on the listserv said a while back, it would be the equivalent of knowingly eating E Coli! I really hope you feel better soon. As for me, I am hoping that returning to a more mundane food existence after the holidays will help.
I applaud you for sharing these symptoms of celiac because there are so many folks with celiac and gluten intolerance, as well as sensitivity issues, who remain undiagnosed and suffering. So educating as well as sharing recipes and food reviews is fantastic!
BTW, when I was diagnosed with gluten intolerance 5 1/2 years ago, it was also determined I had osteopenia. The doctor who did the bone density scan said the only way I could recover bone density was to take drugs like Boniva. However, my gluten intolerance doctor did not advise those and said it would take time, but I could recover bone density with the GF diet, taking a calcium/mag/zinc-type supplement, and being sure to do strength-bearing exercises (walking counts!). The first few years I saw no change, good or bad. But at year 4, my bones were normal again. That was one happy day for me!! It can happen!
I had a friend who had celiac who died from complications of lymphoma in the spring. His prognosis was excellent, but he went in for his last treatment, the doctor found issues of concern, admitted him to the hospital and he never left the hospital. Not trying to be a downer, but just wanted to point out how right you are– the concerns are very serious. I’d really like to know how many folks who die from lymphoma and other serious conditions/diseases are actually undiagnosed celiacs.
Happy Hannukah to you and Merry Christmas to The Artist!
Hey Steve!! Sorry you were glutened
However, great post!! Despite my “psychotic vigilance” in maintaining my gluten free diet, I do tend to “underplay” the fact that I have Celiac Disease when speaking with others… Many times I will say “I have a food allergy” instead of getting into the long-winded explanation of this auto-immune disorder. Your post made me realize that I can help educate others simply by telling them about my life, what I can and cannot eat, and how (through a gf diet) I ensure that I stay healthy and avoid other potential disorders. Here’s to AWESOME health for you in 2009 
Steve — I believe undiagnosed celiac disease contributed to my dad’s death. It’s a long story, but I was very close to him and I spent his last 24 hours taking care of him while his intestines completely gave out. It was so sad and is also why I am on this mission to increase awareness and help people thrive while living with celiac disease. I want to help people go from simply “getting by” to living a full and healthy life. It takes thought, effort, lifestyle changes, tons of self-care, and personal advocacy. We (I have celiac, too) absolutely need to make it clear that this is not just a food phobia, it’s a serious disease and all it takes is a few crumbs to set off the autoimmune cascade again.
Steve, you might think about casein as something that is bothering you. Casein is the protein in milk, lactose is the sugar. Casein is molecularly similar to gluten and often causes a similar reaction. It’s a drag to eliminate dairy as well as gluten, but that may be something to think about.
Anyway, good for you for being your own advocate. It’s hard, I know. I dislike being “high maintenance” and I dislike being the center of attention, but it’s so important. And the more people are exposed to it and learn about it, the better off we all are.
Here’s to a healthy and happy 2009!
Take care,
Melissa
I’m so glad to see you taking this stance. I’m sure you advocate for yourself in other departments, why should you let your health take a back seat when it really is number one?
I always start conversations where food is involved, at a restaurant or someone’s house, with these words “I have celiac disease” and it’s always that last one that really makes people pay attention. I also use words like nece
sorry…
words like necessary and imperative when talking about my food needs. That and big smiles and lots of pleases and thank yous usually does very well. But I never leave things to chance.
All the best to you and the Artist for the new year
Hi There
I really think I am allergic to gluten. I have yet to have the blood test. I bloat when I eat gluten. I could eat a WHOLE loaf of bread and not be full. I have had thyroid cancer. I have bad skin and I feel awful I mean awful when I eat pasta.
Are there people who know they are Gluten Intolerant without being tested or told by a Dr?
I am really trying to eat gluten free since the holidays and I feel wonderful.
I am also overweight and cannot get it off. So we shall see how it goes.
Thanks to everyone and their posts and stories. I love the recipes they are wonderful
Cheers
Katie
So sorry you were glutened, but good for you for deciding to stand up and tell people what Celiac is all about. More people need to be educated about it.
anyone had the biopsy and been told they don’t have celiac but really know they do and feel so much better when they eat gluten free???????? It happned to me and someone else I know. sherri
I just came across your blog and I love it! My daughter was diagnosed right before Thanksgiving and we have learned A LOT in these last few months. Of course we are still learning and still making mistakes but my daughter is doing GREAT taking control of her diet.
Thanks for the great tips and the great blog.