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In 2007, Gluten Free Works published “Recognizing Celiac Disease,” the first work to present over 300 signs, symptoms, associated disorders and complications gathered from documented medical research from around the world.

The book proved that researchers were finding hundreds of health problems associated with celiac disease and gluten.

This list is now being used by celiac disease centers, national celiac organizations and health organizations to help identify at risk patients and determine whether patient symptoms are consistent with celiac disease.

But how can one disorder cause so many problems?

Here’s a look at one way…nutritional deficiencies. Read More »

The following questions and answers were developed by the Beth Israel Deaconess Medical Center at Harvard Medical School:

Q. What is it like for a person you see who is newly diagnosed with Celiac Disease?
A. The gluten-free diet requires more preparation, taking food with you when you travel, making sure that you are safe in dining-out situations or when you are visiting with family or friends. So for some, it is very simple and straight forward and they are already experimenting with new grains like amaranth, buckwheat, millet, sorghum, and teff. But some people are Read More »

Who has celiac disease? While you cannot tell just by looking at a person, there are some common issues that can point doctors in the direction of celiac disease. Here is a list of 8 things that make a person more likely to have celiac disease.

1. Celiac disease is the most common genetic autoimmune disease in the world. Celiac disease runs in families. First degree relatives are found to have celiac disease 4% to 12%. Second degree relatives also appear to have a higher prevalence.

2. 100% of people with dermatitis herpetiformis, an intensely itchy chronic skin condition, have celiac disease. Dermatitis herpetiformis is the skin expression of celiac disease. It is an intensely itchy rash that sometime occurs symmetrically on the arms and legs, but may present anywhere.

3. 1 in 5 people with collagenous colitis have celiac disease. 20% of people with collagenous colitis have celiac disease. Collagenous colitis is inflammation in the lining of the colon. It can only be seen under a microscope. Everyone diagnosed with collagenous colitis should be tested for celiac disease.

4. Up to 8% of people with Type 1 diabetes have celiac disease. People with diabetes and celiac disease have been found to have similarities in their genes with seven common alleles. Everyone diagnosed with Type 1 diabetes should be tested for celiac disease.

5. One in ten people with Downs syndrome have celiac disease. Celiac disease affects 10% of persons with Downs syndrome. Proper diagnosis and treatment with a gluten-free diet has been found to improve symptoms and quality of life. Everyone diagnosed with Downs syndrome should be tested for celiac disease.

6. Almost 7% of persons with cardiomyopathy have celiac disease. Cardiomyopathy is an enlargement of heart chambers and subsequent reduction in their ability to pump blood. Cardiomyopathy responds to a gluten-free diet, possibly because nutrients like carnatine are better absorbed. Everyone diagnosed with cardiomyopathy should be tested for celiac disease.

7. Until recently, celiac disease was thought to be a rare disease affecting less than 1 in 5,000 children. It is now know to affect 1 in 100 persons and can present symptoms at any stage during life. That means it affects children and adults.

8. 

   Multi Generation Family Sitting On Garden Seat

   Celiac disease is a permanent condition but was previously thought to be temporary affliction that children could “grow out of.” Once the immune system has been triggered, it forever identifies gluten as a poison or foreign body within the system. That means it will always attack when gluten is eaten. This attack causes inflammation, intestinal damage, and malabsorption of nutrients.

Visit the Gluten Free Works Treatment Guide to discover how to recognize and correct hundreds of symptoms and disorders caused by the damage from gluten and celiac disease.

Celiac Disease (CD) is not curable, but it is manageable by eating a strict gluten free diet.  That may not be enough.

Many suffering from CD still feel ill even after being faithful to a gluten free diet.  Celiac Disease is an autoimmune disease which causes your body to attack and destroy the microvilli and villi in your small intestines.  These are key to the absorption of nutrients from food and are also where many enzymes used in digestion are made.  When these are destroyed, the ability to absorb nutrients decreases and can lead to malnutrition.

This is not all that happens in a damaged intestine.  Gluten can cause the tight junctions, spaces between cells lining the intestines, to be damaged or destroyed allowing larger molecules such as proteins and even microorganisms to pass into the blood stream.

Under normal circumstances, the intestinal wall only permits small particles to pass through the intestinal wall and into the blood stream. When these larger molecules make it through into the blood stream our bodies do not recognize these  larger molecules and an autoimmune response begins.  It is these autoimmune responses that may be the cause of you still feeling ill.  What needs to happen to feel well again, is to heal the gut.

[Editor’s Note: This video is from 2007, but it is still true. Celiac Disease research still lags other, less prevalent conditions. Yet, it is the easiest to treat, requiring a gluten-free diet and nutrient replenishment. The focus has been on the Gluten-Free Diet. Let’s shift it back.]

Doctors are missing over 95% of people with celiac disease – over 3 million in the United States.  That’s more people than autism or Type 1 Diabetes, yet celiac disease receives a fraction of the funding of these diseases.  Lives are being destroyed every day, when a simple change in diet could cure them.  Let’s get the word out…

Read More »

Finding out you have Celiac Disease is a big transition. Often it’s a good one that leads to feeling great, yet initially it’s a lot of information to take in at once to understand what you need to do for your health. Much of it is because we’re been eating one way for 15, 30, 50 or more years and it can be overwhelming to to instantly unlearn everything we’ve done and change overnight. Wouldn’t life be easier if you could take a doctor or dietitian home as a portable reminder of the basics? And so the Celiac Disease Video Project was born.

See below for videos of Dr. John Snyder, Chief of the Department of Gastroenterology at CNMC in DC, Dr. Gary Kaplan, Medical Director of Kaplan Center for Integrative Medicine and Cheryl Harris, MPH, RD Registered Dietitian and Nutritionist discussing testing, diagnosis and follow-up, eating a gluten-free diet and a short segment on when it’s not Celiac. Though there are an increasing number of videos out there on people’s stories of diagnosis and ways to make a gluten-free pie, this is the first of its kind to do a run-down of the medical and diet basics by healthcare professionals. The Celiac Sprue Association has been kind enough to support the project. Read More »

Photo credit: Celiac Disease Awareness Month

May is National Celiac Disease Awareness Month, so it seems appropriate to share some medical facts about this autoimmune disease that just might shock you.

These facts come from Dr. Tom O’Bryan who is is a nationally recognized speaker and workshop leader specializing in gluten sensitivity and celiac disease.  Dr. O’Bryan’s specialty is in teaching the many manifestations of gluten sensitivity and celiac disease as they occur inside and outside of the Read More »

1. Celiac disease is the most common genetic autoimmune disease in the world.

2. Celiac disease is the most commonly misdiagnosed disease in the world.

3. Celiac disease blood tests are not pass / fail. They measure antibody levels that suggest how likely an intestinal biopsy will discover damage consistent with celiac disease.

4. Celiac disease can affect any genetically predisposed person of every race or gender and can first present symptoms at any age.

5. Optimal treatment of celiac disease includes 1) a 100% strict gluten-free diet, 2) nutrient deficiency identification and replenishment and 3) education and support that meet the physical and emotional needs of the patient.

6. Most cases of unresponsive celiac disease are due to inadvertent gluten exposure, where the person is consuming gluten without realizing it.

7. The average person with celiac disease has a normal body mass index. The traditional thinking was that a person with celiac disease would be underweight.

8. Silent celiac disease refers to a person who tests positive on blood test and villous atrophy on intestinal biopsy, but exhibits no overt symptoms.

9. Celiac disease presents submicroscopic damage causing nutrient deficiencies before villous atrophy. That is, before an endoscopy with biopsy finds intestinal damage, damage can already be occurring.

10. 50% of people diagnosed with Celiac disease exhibit neurological symptoms at the time of diagnosis.

11. Doctors consider celiac disease to be a gastrointestinal disease. Many people with neurological symptoms due to celiac disease do not exhibit gastrointestinal symptoms. These people have a decreased chance of receiving a proper diagnosis and treatment.

12. Anxiety can be the only symptom of celiac disease. In this case it is due to nutrient deficiencies.

13. Celiac disease tests are not pass / fail. A patient can test “negative” on one day and positive two weeks later. Follow up testing should be performed if symptoms do not resolve.

14. Patient education is the most important predictor of good clinical outcome in celiac disease. The more you know, the more likely you will be to avoid gluten, develop a diet that works best for your health and lifestyle, get well and stay healthy.

15. Celiac disease symptoms can be completely different among family members.

16. Celiac disease symptoms number over 300, are widely varied in nature, affecting every and any body system and organ. (The 300 symptoms list was first presented in “Recognizing Celiac Disease,” authored by Cleo Libonati, RN, BSN and published by Glutenfreeworks.com in 2007.)

17. Symptoms in celiac disease are due to inflammation and/or nutrient deficiencies from chronic intestinal damage.

18. Celiac disease diagnosis can take10 years or more from the time symptoms first present. It is frequently the last disease doctors consider.

19. Celiac disease affects over 3 million people in the United States, yet the vast majority are not diagnosed. The symptoms of celiac disease are frequently considered the definitive diagnosis, leaving the true underlying cause untreated.

20. Exposure to gluten is the most important environmental factor in celiac disease. The sooner gluten is removed from the diet, the more likely full remission will be achieved and long term complications can be avoided.

21. Although celiac disease is now known to cause over 300 symptoms, the medical community has traditionally instructed doctors that celiac disease affects children, presenting symptoms of 1) diarrhea, 2) wasting muscles, 3) anemia, and 4) abdominal distention (bloating). You must request celiac disease testing if you do not fit this list, and often even if you do. Assuming doctors look for celiac disease is a mistake.

This article brought to you by the Gluten Free Works Health Guide! Everything you need to know about celiac disease, gluten sensitivity, your symptoms and how to fix them!

Celiac disease awareness is desperately needed – now more than ever. 

While the gluten-free diet has exploded in popularity, celiac disease remains massively under-diagnosed.

Why? Two Reasons: 

1. The public has shifted its focus to the gluten-free diet and away from celiac disease due to the media. The media likes diets. Diets sell. Oddly named diseases that are difficult to describe in catchy sound bites don’t sell.

2. Doctors do not have the information they need to recognize, diagnose and treat this common disorder. The information exists but there is no authority that actively ensures Read More »

This is a Celiac Disease Awareness Month Public Service Announcement.

Many people, including doctors, believe that the blood tests for celiac disease are pass/fail, and that if you have a negative result you can never in the future have a positive result. This is wrong. See how all the celiac disease tests work on our Diagnosis page.

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