Raising Awareness for Celiac Disease and the Gluten-free Lifestyle

I had the good fortune of attending a luncheon yesterday hosted by the gluten-free food manufacturer, Schar.  Its purpose:  to raise awareness for Celiac Disase/Gluten Sensitivity (CD) and the gluten-free lifestyle so that the undiagnosed millions out there can get the treatment they need and start their journey to healthier living, as the consequences for going untreated can be serious. 

The luncheon was a lovely event.  From the passed hors d’oeuvres of mixed mezze, bruschette and mini pizzas to the bread basket accompanying the salad and entree courses to tiramisu and assorted cookies for dessert, everything was gluten-free.  For those of us in the audience who spend every day avoiding gluten, it was a nice break from the hypervigilance we normally carry with us when attending a catered event.  Kudos to executive chef of Espace, Jason Munger, for creating a delicious gluten-free meal.

 

The event was also a great opportunity for the gluten-free advocates in the audience to meet one another and connect faces with the names we see on websites, blogs and Twitter.  There is a real sense of camaraderie within the gluten-free community and it is a delight to have the opportunity to meet others with the same goal: raising awareness and providing those affected with resources and education for making their gluten-free lives a little easier. 

But the real reason we were all there is to listen and learn from the outstanding panel of speakers:

  • Alessio Fasano, MD, Director, Center for Celiac Research, University of Maryland – one of the country’s foremost authorities on CD, Dr. Fasano spoke both candidly and with humor about the prevalence, diagnosis and clinical presentation and manifestations of the disease 
  • Anne Roland Lee, MSEd, RD, LD, Director of Nutritional Services, Schar USA – a nutrition expert on the disease, Ms. Lee spoke about the nutritional consequences of untreated CD as well as the nutrition philosophy of Schar products
  • Hannes Berger, President and CEO, Schar USA – Mr. Berger shared the direction of the Schar USA team of gluten-free food professionals, both from a research and development and education perspective
  • Colin Leslie, Founder of the Colin Leslie Walk for Celiac Disease –  a poised 18 year old, who after being diagnosed at the age of 13 took on the challenge of starting a walkathon to raise money for CD research, Colin spoke about his personal experience of going undiagnosed and the trials and tribulations of trying to find an answer to his unexplained medical problems

So, having had the honor to attend this event and meet those in the gluten-free community making a difference, I’d like to once again share the statistics, symptoms and consequences of untreated CD in the hopes that those reading this can perhaps help others identify the medical issues they are experiencing. 

Statistics of Celiac Disease

  • it affects 1% of the population, or 1 out of 100 Americans
  • 97% affected don’t even know it and are going untreated

Symptoms of Celiac Disease

There is a wide range of symptoms and this is one of the reasons CD was overlooked by doctors for so long in the US.  The symptoms include:

  • weight loss
  • gastroesophageal reflux (acid reflux)
  • gas, bloating
  • diarrhea and/or constipation
  • abdominal pain/cramping
  • infertility
  • anemia
  • fatigue
  • failure to thrive/lack of growth
  • osteopenia or osteoporosis
  • dermatitis herpetiformis
  • neurological complications

Long-term Effects of Untreated Celiac Disease

When left untreated, CD can have serious long-term effects on health, including: 

  • Iron-deficiency anemia
  • Osteoporosis/osteopenia
  • Vitamin K deficiency, with risk for hemorrhaging
  • Vitamin and mineral deficiencies
  • Central and peripheral nervous system disorders – usually due to unsuspected nutrient deficiencies
  • Pancreatic insufficiency
  • Intestinal lymphomas and other GI cancers
  • Neurological conditions
  • Gall bladder malfunction

Other Autoimmune Disorders Associated with Celiac Disease:

While not true for all cases, the following disorders can and often go hand-in-hand with CD:

  • Dermatitis Herpetiformis (DH)
  • Insulin-dependent Type I Diabetes
  • Thyroid disease
  • Systemic Lupus Erythematosus
  • Liver diseases

To learn more, visit the Celiac Disease Foundation.

 

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2 responses to “Raising Awareness for Celiac Disease and the Gluten-free Lifestyle

  1. I also attended the Schar event yesterday and thought it was a great event. I agree, there was a great sense of camaraderie in the crowd and the speakers were interesting. Sorry I didn’t meet you!

    • I’m sorry we didn’t get to meet either! Hopefully, we’ll get a chance in the near future. Please let me know if there are any topics of interest to you that you’d like covered in my blog. Always looking for ideas!

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