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Celiac awareness month is observed in either October or May in the United States, depending on which celiac disease organization you talk with, but there is only one National Celiac Awareness Day!
That is because Celiac Awareness Day celebrates the birthday of Dr. Samuel Jones Gee, the British physician who was the first modern physician to describe the link between the clinical pathology of celiac disease and diet. Although gluten was not discovered as the cause until decades later, Dr. Gee’s work laid important groundwork for the research to follow.
Who Was Dr. Gee?
Samuel Jones Gee, MD was born September 13, 1839 and graduated from medical school in 1865. He created a large medical practice in London and became a leading authority on childhood diseases. He published nearly 50 medical papers, nearly all of which are considered to have important permanent value. Besides identifying celiac disease, some of his papers included scarlet fever, chicken pox and tubercular meningitis, rickets, hydrocephalus and enlarged spleen in children.
What is Celiac Disease?
Celiac disease is the most common genetic autoimmune disease in the world. Active celiac disease involves a specific auto-immune response in the small intestine to dietary gluten (proteins in wheat, barley, rye and oats) that inflames and damages the vital tissues of the lining. Resulting health problems, most stemming from nutrient deficiencies due to intestinal damage, are called multi-systemic because they may involve any body system. Symptoms may be few and mild or mind boggling in number and severity. Diagnosis involves blood tests, endoscopy with biopsy and, most importantly, the doctor’s judgment in the case the test results do not conform with symptoms. A 100% gluten-free diet and correction of nutritional deficiencies is the proper treatment for celiac disease.
Celiac disease affects about 1% of the world’s population. If it was a communicable disease, that would make it an epidemic. Although common, it is estimated that 85% of those in the United States who have celiac disease are NOT diagnosed. Unfortunately, a combination of variable symptoms, lack of public awareness and inadequate education of physicians, means that the vast majority of people suffering from celiac disease are undiagnosed or misdiagnosed with the results of the disorder (e.g. irritable bowel disease, fatty liver, neurological disorders, weight issues) and therefore not properly treated with a gluten-free diet.
Celiac disease is easy to treat. Prognosis depends on the length of time gluten is ingested, therefore quick diagnosis and treatment is crucial.
Awareness is Critical
The public’s focus has shifted from celiac disease to the gluten-free diet. But, this is a deadly mistake.
Celiac disease is a silent killer and it is yet unknown whether “gluten sensitivity” is not just a precursor to full blown celiac disease. Patients who are not made aware of the seriousness of celiac disease are risking their health by cheating on the diet. People who should be tested, but just start the gluten-free diet instead, increase the likelihood of false negatives if they later decide to be tested.
Doctors who have not kept up on research will not recognize symptoms, believe patients who tell them they “can’t eat gluten” are experiencing psychosomatic episodes, or fail to properly treat patients.
What doctors have been taught celiac disease looks like.
What celiac disease really looks like.
What You Can Do!
- Refer your doctor and friends to Glutenfreeworks.com and authority publications, such as “Recognizing Celiac Disease,” by Cleo J. Libonati, RN, BSN.
- Contact non-profits to get involved: National Foundation for Celiac Awareness, Celiac Sprue Association, Gluten Intolerance Group, Celiac Disease Foundation.
- Share our Symptoms List (over 300!)with friends and family, so they recognize the seriousness of celiac disease.
- Use the hashtag #celiacawareness in your posts on social media websites. (Great idea here from the NFCA!)1
- Ask your friends and family if they have any questions about celiac disease. You might be surprised and heartened by their responses.
- Familiarize yourself with celiac disease. New research is coming out all the time. Read up on recent research and visit websites like Glutenfreeworks.com for accurate information about gluten, gluten disorders, diagnosis and treatment.
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Author Information: John Libonati, Florida
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached by e-mail here.
I am one of those celiacs who went way too long before hearing of the ailment, got too damaged and became too sensitive to gluten, and too neurologically and endocrinologically affected. I never enter restaurants unless they are totally gluten-free.
I subscribe to Dr. Rodney Ford’s ideas that 1) gluten is bad for everyone. 2) celiac is primarily a neurological disease. 3) we need to change the language to “gluten zero”.
So, from my perspective, I still think that 1) any reduction in the use of gluten grains is good. 2) any number of people who discover they can do without gluten grains is good. 3) any number of people who try gluten-free and feel better is good.
Yes, I know it seems like a hinderance to the majority of celiacs, who are trying to eat out and socialize safely. But I worked in restaurants and know how difficult it is to create a safe environment, and in my opinion it is going to be difficult without a dedicated separate kitchen, and have heard of a case of a restaurant with a separate great kitchen where a celiac was glutened because her order went to the wrong kitchen!
And how about those researchers at the University of Washington expressing confidence that they can suppress the expression of gluten in wheat by 90%? That’s just bad news for celiacs, in my opinion. Even if they were able to totally eliminate gluten from a strain of wheat, I would not get near it! My doctor says there is a “Pavlov’s dog” effect, such that my immune system is likely to get revved up by any part of wheat.
I was 47yrs old when i got told i was celiac,i couldn’t believe it as we were brought up on home made bread cakes and pastries,so i was shocked to here this i am now 55yrs old and i still sometimes can’t believe it .