Gluten-Free: National Celiac Awareness Day

Today is National Celiac Awareness Day!  I'd be remiss if I just shared a recipe or posted a review of a product or restaurant.  According to the resolution designating September 13th, the US Senate "recognizes that all people of the United States should become more informed and aware of celiac disease" and encourages all Americans to participate in activities that celebrate this day.  A bit of trivia for you: the reason for it being today is the birthday of Samuel Gee, the pediatrician who in 1888 first published a complete clinical description of celiac disease and connected them to diet.

Celiac disease -- as well as gluten-interolance, gluten ataxia and a whole host of related diseases -- are a serious matter.  I don't knock people who are on gluten-free diets for weight management or holistic health reasons, but for most of us, we have to strictly adhere to being gluten-free.  This isn't a fad we can drop.  There is no gluten allowed inside my home or even outdoors in my yard; cross-contamination isn't worth the risk.  Even if there's a food which says it's gluten free, we can't eat it if it's made on a line shared with products containing wheat, barley, rye or other verboten grains.  We have to worry about the lack of standards for gluten-free labeling despite the Food Allergen Labeling and Consumer Protection Act of 2004  and the debate of whether 5 parts per million, 20 parts per million or somewhere in between is truly safe for us.  Our immune systems react to gluten as if they were alien invaders and our bodies are the collateral damage, damaging our insides and preventing us from absorbing nutrients.



However, those of us who know about our dietary restriction are the lucky ones.  Celiac disease affects 1 in 133 Americans.  Over 85-95% of those remain undiagnosed or misdiagnosed.  That equates to millions of people who experience gastrointestinal pain and other symptoms on a daily basis... and even people who experience no symptoms at all but are living with the destruction of their GI tract without their knowledge (until a physically or emotionally stressful event brings on symptoms).  Uncontrolled celiac leads to a greatly increased risk of bowel, intestinal, anal and other cancers plus thyroid disease, osteoporosis, infertility and triggering the onset of other auto-immune disorders.

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It's notoriously hard to diagnose, but don't give up!  There's an antibody blood test, but my mother got a false negative twice before her positive result.  Sometimes the genetic test -- celiac is in DNA and is passed down to children -- will lead to a diagnosis.  The "gold standard" is an endoscopy followed by a small intestinal biopsy.  There are newer tests that are barely used (as well as relatively unknown), and not everyone who is celiac will test positive on any of them.  This is especially true if a person has already gone gluten-free prior to obtaining a diagnosis, which is a regular occurrence given the 6-10 year average wait for a correct diagnosis in the US.

Here's a checklist of the major symptoms and a partial list of related illnesses, compiled from multiple sources:

• bloating, gas and/or abdominal pain
• hard to flush, bulky or loose stools
• diarrhea or constipation
• nausea
• fatigue
• itchy skin rash
• tingling or numbness in hands and feet
• discolored teeth or loss of enamel
• canker/mouth sores or cracks in the corners
• joint pain
• irritability or behavior changes
• significant unexplained weight loss
• poor weight gain
• delayed growth
• missed menstrual periods
• fractures or thin bones
• anemia
• depression
• anxiety
• migraines
• weakness
• brain fog

• Iron deficiency/ anemia
• Infertility
• Depression
• Osteoporosis or osteopenia
• Type 1 diabetes (3.9 -12.3% of sufferers are celiac & should also consider getting tested for celiac periodically)
• Thyroid disease (5% of suffers are celiac & should also consider getting tested for celiac periodically)
• Sjogren’s disease
• Juvenile idiopathic arthritis
• Irritable bowel syndrome
• Intestinal cancer
• Peripheral neuropathy
• Down Syndrome (5-12% of sufferers are celiac)
• Turner Syndrome
• Williams Syndrome
• Collagenous colitis (20% of suffers are celiac)
• Dermatitis herpetiformis
• Fibromyalgia
• Narcolespsy
• Other auto-immune conditions 
• Family member with celiac or gluten intolerance

Oh yeah.

Locally in New England, we have support and advocacy from the Healthy Villi.  They publish an excellent quarterly newsletter, hold day-long membership meetings and one big annual expo with speakers, workshops, vendors and a buffet; the annual Gluten-Free Expo does not require membership in the organization, nor do small support meetings throughout the region.  As you'll know from my many blog posts, we also have Pierce's Pantry serving the low-income celiac community via local food banks.

A fantastic national organization is the National Foundation for Celiac Awareness, who have a section on their website specific to kids and college students, for both the progeny and their parents as well as a whole host of additional resources.  Others include the Celiac Sprue Association, American Celiac Disease Alliance, and the Celiac Disease Foundation.  A useful gluten-free portal can be found at Celiac.com.

Please get tested!