Welcome to The Savvy Celiac. Where we help smart people become savvy celiacs.
Whether it's gluten free news, lifestyle and recipe questions, medical research, school tips, eating out, or discussing the disease symptoms that come with having celiac. Our one goal: to empower you to live a healthy gluten free life.
It all begins today — 31 days of opportunities to get the word out about celiac disease during this, Celiac Disease Awareness Month.
What’s there to be aware about you say?
Celiac Symptoms: they run the gamut.
- From bad teeth to bad hair.
- From skin rashes to mouth sores.
- From underweight to overweight.
- From diarrhea to vomiting.
- From fatigue to brain fog.
- From malnourishment to organ dysfunction.
- From anemia to cancer.
Yup! Those ranges cover a lot! Many of these symptoms are not considered typical for celiac disease since many doctors only look at the GI symptoms. But they all should be considered.
Who has it? 1 in 133 Americans have celiac! And what’s so frustrating is that 97% remain undiagnosed and they continue to live their lives in ill health. That poor health only gets worse- in some cases causing of osteoporosis, infertility, and cancer.
What’s the big deal? If you need numbers….here’s good information from the National Foundation for Celiac Awareness: the financial burden of celiac disease for women is over $4,000 and for men it’s over $14,000. Or that it takes on average 6-10 years for a celiac diagnosis.
Imagine living a life where no one knows what is wrong with you and you’re getting sicker by the day? This is what happened to my daughter for months before her diagnosis — and it happens to countless others for years.
How awareness can help: The NFCA also reports that raising awareness could bring that 97% undiagnosis rate down to about 50% by 2019 — which means lower financial burden for patients and more importantly lower risk of celiac patients developing an even more debilitating and long-term disease.
Help Raise Awareness for Celiac Disease
Not that I consider Dr. Phil McGraw the best adviser and “quotemeister” ever… but this quote struck a chord with me while researching this article,
“Awareness without action is worthless.”
What can we do to raise awareness for celiac disease? Well, that depends on what you’re up for.
Easy & Low commitment:
- Donate money and/or attend a local celiac fundraiser. There are many going on around this time. Go to Celiacwalk.org for more information.
- Volunteer at a celiac-related event
- Donate gluten-free non-perishable items to your local food shelf
- Ask about gluten-free options at your local restaurant or order from a gluten-free menu.
Longer-term commitments:
- Start a support group
- Organize an education or awareness event on celiac disease
- Teach a class
In our home, we’re doing a combination of easy and longer term. My daughters are wearing their celiac shirts to school tomorrow and my oldest daughter just painted the Making Tracks for Celiacs footprints on my toes! I also am one of the main organizers of the Twin Cities’ celiac fundraiser walk/run and gluten free food expo on May 19th.
No matter how big or small …any kind of awareness you can offer to celiac disease would be fabulous!
Tags: awareness, celiac, gluten-free, volunteer
Hundreds of Walkers Dared the Rain in 2011
One month from today, more than a thousand people from across the state of Minnesota and neighboring states will come together in the Twin Cities area to champion for one cause: promoting research and awareness of celiac disease during the Walk/Run for Celiac Disease event.
Making Tracks for Celiacs Event
This is our 11th year putting on this event here, which includes a 5K run, 2 mile walk and a great Gluten Free Food Expo. I have been involved every year since its inception and it truly gets bigger and better each year.
Our vendor area is full– actually bursting at the seams with more than 30 — this year with great gluten free food from both local and national companies. Plus, we also have our very popular kids’ games area. What people tell us is that this is the best place to check out new foods, have fun, raise awareness and feel like your family can eat in a safe, gluten-free environment.
Great Gluten Free Food!
- Registration/5K packet pick-up for Walk/Run opens at 7:45 a.m.
- Run starts at 8:55 a.m.
- Walk starts at 9:00 a.m.
- Gluten Free Food Expo 9:30 a.m.-12:00 p.m.
*Free entry to the expo with a $5 donation ($20 cap for families)
Location: Holy Family Catholic High School
Victoria, MN (directions & map)
Money raised goes to the University of Maryland Baltimore’s Center for Celiac Research. Our local Twin Cities ROCK chapter can keep up to 25% for event costs and local educational opportunities.
How You Can Help Raise Awareness for Celiac Disease
There are many things you can do to help with the celiac cause:
- Request/collect donations for the event. You can use this pledge form to keep track of cash or check donations or you can direct them to the registration/donation page on the website
- Invite friends, family, co-workers to come — even if they don’t have celiac disease. Maybe they want to support you or maybe they want to come run a 5K that morning.
Gym Turned into a Carnival With Vendors and Games When the Rain Came Down in 2011
- Volunteer for the event! Volunteers get free entry to the Gluten Free Food Expo as well! We need help with set-up, tear-down and everything in between! Contact us through our walk website for more information.
- If you own or are in contact with a company that would like to donate samples of gluten free food, please contact us as well.
We are grateful for whatever you decide. We look forward to seeing you on May 19th. Don’t miss this great event!
Tags: celiac, fundraiser, gluten-free
I had never heard of it: “refeeding syndrome”. But a new study shows a first for celiac disease: 5 cases of refeeding syndrome in children that could otherwise have been called celiac crisis. The research published in April’s Journal of Pediatric Gastroenterology and Nutrition is entitled “Refeeding Syndrome in Children in Developing Countries Who Have Celiac Disease”. You may be asking why do I care? It turns out the treatment in these cases are different and should be noted that way.
First—two definitions both courtesy of the National Institutes of Health:
Refeeding syndrome: At its most basic, says that your body has trouble with food after prolonged starvation. For specifics: “In starvation, the secretion of insulin is decreased in response to a reduced intake of carbohydrates. Instead, fat and protein stores are catabolised to produce energy….When they start to feed, a sudden shift from fat to carbohydrate metabolism occurs and secretion of insulin increases. This stimulates cellular uptake of phosphate which can lead to profound hypophosphataemia” – or low phosphorous in the blood. NIH says it can cause confusion and muscle weakness…including heart trouble.
Celiac Crisis: is a “life-threatening syndrome in which patients with celiac disease have profuse diarrhea and severe metabolic disturbances.” It usually requires hospitalization.
Back to the new research. It is a small study — in 2010, researchers reviewed 35 records of children with celiac disease and five of them were severely malnourished, had anemia and the aforementioned phosphorous deficiency (as well as other nutritional deficiencies). Researchers concluded they had the “perfect setting for developing refeeding syndrome. They also felt these patients were in celiac crisis except their symptoms worsened after starting the gluten-free diet.
The NIH describes using steroids to help in celiac crisis. In this case the research said they didn’t use steroids but rather “correction of electrolytes and gradual feeding that led to a successful outcome in all of them.”
Researchers concluded that doctors need to find cases of celiac early and correct treatment are “keys to a successful outcome”. “Severely malnourished patients with celiac disease are at risk of developing potentially life-threatening refeeding syndrome which may mimic celiac crisis especially in developing countries.”
I just thought this was a very interesting article. Researchers don’t state in the research abstract where they did their research but judging from the headline which states “in developing countries”, my guess it it wasn’t in the US. Nevertheless, it is still amazing to me that people, children in particular, can go on so very long without a celiac diagnosis to get them to this point of starvation—which can lead to refeeding syndrome.
Tags: Severe Malnourishment from Celiac Can Cause Refeeding Syndrome