With Awareness...Comes Hope ~

I was especially intrigued and moved by a story that arrived via my Google Alerts today regarding a study finding that a low adherence to proper biopsy guidelines may be contributing to the under-diagnosis of Celiac Disease. Wow. I was so bothered by this article I had to Tweet it earlier today, believing that this kind of study and its paramount findings could be hugely important to the uber-necessary increase in swifter diagnosis time that's still plaguing the United States.

The study released this month (July 2011), and authored by renown celiac doc, Dr. Peter Green, Director of the Celiac Center Columbia University Medical Center, has found that most patients undergoing biopsy of the small intestine do not have the recommended number of samples taken during the procedure (recommended being four) to diagnose celiac disease.

Having undergone the very unpleasant Endoscopy procedure (more than once) in an effort to be diagnosed in 2000, I was fortunate that my results were positive the second time around. With that said, I was also an incredibly sick young woman, fading fast even at the hands of my capable Oncologist who believed I had the beginning stages of Leukemia and was only hours away from ordering me a blood transfusion. When my second set of biopsy results revealed that I did indeed have "Celiac Sprue," I cannot tell you how relieved my doctors, family, and I were to finally...after nine agonizing years, have a concrete result and answer. So as I read this study and article today I could feel the weight and struggle of all those patients out there right now fighting for their lives and for a diagnosis, one that could be easily overshadowed by the dare I say, negligence or oversight of doctors STILL lacking the knowledge to truly understand the gravity of this disease. It's not a diet, people!

I found this particular paragraph from the article to be most compelling and telling; "The investigators identified 132,352 individuals who underwent biopsy between 2006 and 2009, for a variety of medical indications, including diarrhea, abdominal pain, esophageal reflux, and anemia. Only 35 percent of this group had at least four specimens submitted, and the most common number of specimens submitted was two. But adhering to the recommendation of submitting at least four specimens more than doubled the diagnosis rate of celiac disease."

I truly urge you to forward this article to anyone you know who is struggling with any related symptoms to those of celiac disease, with the hope that more and more patients continue to bring informed questions and information to their doctors therefore, shining more and more light on this very, very important subject.

It really is a matter of life and death, so be your own advocate and one for those whose voice has yet to be discovered or diagnosed! :)

Celiac Family Ties...

It's April Fool's day and already spring time - hard to believe. When I got a call from my mom earlier today stating that she might also have Celiac Disease, I thought she was playing an April Fool's joke on me at first, but she wasn't. She's been suffering with stomach issues as of late and her weight has dropped and she's just really thin and can't ever seem to remedy that. I had suggested last month that she pay a visit to my wonderful Celiac doc, Dr. Dennis Yamamoto in Reno. She did so, and after a colonoscopy, the results revealed that she's healthy; no tumors, no ulcers, etc...but the issues she was having have persisted. This morning, Dr. Yamamoto met with her and delivered his opinion about the fact that he feels she most likely has Celiac Disease due to the inflamed lining of her stomach.

To this present day, I'm the ONLY person in our entire family, on both sides, who has this disease. Others have complained of stomach issues and abnormalities, yet they won't get properly tested. My maternal grandfather died of stomach cancer, but we always assumed it was due to his years of smoking and drinking alcohol (that generation of men were drinkers) and an unbalanced diet, perhaps. My maternal Aunt also has huge issues with her stomach and numerous other related problems, that in my mind, are directly related to having an auto-immune disease...but what do I know right, I just live with Celiac and was diagnosed after nine years of suffering! :)

If my mom does end up having Celiac Disease I think I will be filled with mixed emotions for her. On the one hand, she's lived around my disease for years now and has been a tremendous help and support to me, always by my side and willing to learn anything and everything about CD, so she definitely has a "head start." But on the other hand, I will be a little sad for her, knowing how much she loves her Guinness beer every once in a while, or a good Irish Coffee at the Buena Vista in SF, or a sweet roll. I also have the distinct feeling that she'll take this on full-force, yet try to hide the fact that she's overwhelmed and perhaps grieving a bit for her past life with gluten. I can't imagine living 63 years of life with gluten and then whammo - no more.

If the tests do confirm she has Celiac Disease, I've decided that my gift to her will be to show the support I've received during the last nine years, times 10. I want her to grieve for what's behind her, but be excited and hopeful about a "new life" that would consist, most-likely of better health, more energy, some weight gain and longevity. It's all any of us can hope and pray for in life.

And for all of you out there who have been recently diagnosed or maybe still struggling with the adaptation that must take place as you transition into a life sans gluten, know that you are NOT alone and take comfort in the fact that this is truly a great time to be diagnosed as a Celiac. That statement may sound strange or "Pollyanna" to you, but I can tell you, as someone who rarely found a "gluten-free" product on a store shelf nine years ago, your resources now are abundant and blossoming. In addition, I can tell you for a fact that the struggle is worth the effort and "cheating" will get you nowhere but sick in bed for weeks.

I will update you once my mom's diagnosis is soundly determined. It could be an interesting week for our family. If she does join "my world" you never know what can happen - maybe this blog will take on a new shape and theme...

Two Celiac minds are always more creative than just one!

Until then, keep sticking to your gluten-free diet and enjoy the benefits of eating healthy and all of the goodness that nourishing, fresh food brings to your body.