John Libonati

15 Celiac Disease Facts Everyone Should Know

by John Libonati on April 1st, 2010


Celiac disease awareness is growing, but misinformation still abounds. Here are 15 celiac disease facts every doctor, patient and member of the public should know.

    1. 1 in 700 - The average prevalence of celiac disease in the United States 1950. (Mayo)2. 1 in 100 – The average worldwide prevalence of celiac disease across all races today. (NIH) The average prevalence of celiac disease in the United States today. (Mayo)

    3. $8,500 - The average annual estimated healthcare cost of each person with untreated celiac disease in the United States. (Cigna/Columbia Celiac Disease Center study)

    4. 40+ - The number of countries with celiac disease support groups.

    5. $1.56 billion – The gluten-free food industry sales in 2008. (Foodwatcher)

    6. 3-12.3% – The prevalence of celiac disease among adults with Type 1 Diabetes.

    7. 24% - The prevalence of asthma among children with celiac disease.

    8. 200 to 300% – The increased chance of developing cancer in people with untreated celiac disease.

    9. 800 to 900% - The increased likelihood of miscarriage for a woman with untreated celiac disease.

    10. 300+ - The number of signs, symptoms, associated disorders and complications that can directly or indirectly stem from celiac disease. (Recognizing Celiac Disease)

    11. Celiac Disease is the most commonly misdiagnosed genetic auto-immune disease in the world.

    12. Any Age – Celiac disease is not a childhood disease as previously thought. Symptoms can present at any age following the introduction of dietary gluten.

    13. No Cure - The only treatment for celiac disease is the gluten-free diet (No Wheat, Barley, Rye or Oats). Once gluten is removed, healing and recovery occurs. You cannot grow out of celiac disease.

    14. All or Nothing - Celiac disease is a pass/fail prognosis. One either has it or they do not. That said, test results can change. A person can test negative one one day and positive weeks, months or years later. Once positive, the diagnosis is lifelong.

    15. Treating Celiac Disease Requires Treating Nutrient Deficiencies – Treating celiac disease requires removing gluten from the diet as well as identifying and correcting nutrient deficiencies. Self-management in the identification of symptoms due to nutrient deficiencies is crucial to long-term health as nutrient deficiencies can persist or arise in the future.

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Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached by e-mail here.


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5 Responses to “15 Celiac Disease Facts Everyone Should Know”

  1. Tracy Haughton says:

    Fact #16 That Everyone Should Know

    16. Celiac disease is part of the gluten sensitivity spectrum, as are non-celiac gluten sensitivity, gluten intolerance and gluten allergy.You can have any gluten sensitivity issue, whether or not you have Celiac Disease.

  2. Heidi says:

    Regarding #14. Celiac Disease is pass or fail, but that does not meant the person who is not a celiac is not a gluten intolerant, and after the official diagnosis is given it might be useful to try the diet and observe changes anyway.
    IMHO

    • John L says:

      Absolutely. In the case of a “negative” test result, the gluten-free diet should be undertaken to determine response. This article concerns celiac disease, but celiac disease is part of the gluten sensitivity spectrum, as are non-celiac gluten sensitivity, gluten intolerance and gluten allergy. You can have any gluten sensitivity issue, whether or not you have celiac disease.

  3. Kristen says:

    Regarding #15 – how do we know what nutrient deficiencies we may have? Are there blood tests for that or just symptoms? I’ve been gluten free for 4 yrs, since my diagnosis. I take vitamins, I take the new “Bio 35″ supplement designed especially for celiacs, and I’m a vegetarian (for 13 yrs). If theres a way to tell if I’m missing something, I’d love to know, thanks!

    • John L says:

      Your doctor can test you for vitamin/mineral levels as well as carbohydrate absorption. The best way to keep yourself healthy and making sure you are properly nourished is by keeping track of your symptoms – skin, hair, eyes, fingernails, tongue, personality changes, memory changes, etc. Recognizing Celiac Disease, by Cleo Libonati, RN, BSN, was created for this purpose. You look up your symptoms and the book tells you which nutrient deficiencies are behind them. http://www.recognizingceliacdisease.com. Then you can speak with your doctor who can best treat your symptoms either through diet or supplementation. Be careful when taking supplements on your own, because you absorb better as you heal. So, what you may have needed before in large doses, you may not now. Track your symptoms and you’ll know where you stand throughout life.

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