Celiac Disease

This information is has been researched from a variety of resources believed to be trustworthy and based on scientific research.  It is provided only as a resource and is not intended as medical advice or endorsement.  If you believe that you have a food allergy or intolerance, it is very important to discuss your concerns with a medical professional.



Celiac Disease

Celiac Disease

Celiac Disease (CD) is an immune response to the proteins in wheat, barley, rye and their subspecies (known collectively as gluten). While some refer to Celiac Disease as a food allergy because of its immunological nature, it is a non-IgE response. This means that the reaction is not anaphylaxis (as with a typical food allergy) but is a chronic autoimmune disease that affects the gastrointestinal system.

Gluten causes damage to the small intestine which in turn can no longer properly absorb the nutrients in our food that we require for a healthy body. Damage of the intestine and other body systems (such as osteoporosis of the bones from the subsequent vitamin and mineral deficiencies) can be undiagnosed for years

Originally considered only a childhood disease and extremely rare in adults, we now know that Celiac Disease affects approximately 1% of Americans of all ages. CD is not the same as gluten intolerance which is discussed under Food Sensitivity and Intolerance.

Symptoms of Celiac Disease

Because the symptoms can be wide ranging, CD can be difficult to diagnose or may be misdiagnosed as other ailments.  Many Celiacs remain undiagnosed because they show no symptoms at all even though the damage is still occurring in the small intestine.  Still others may have intermittent symptoms or symptoms that are so broad that they are not an obvious indication of Celiac Disease.

Here are some of the most common symptoms but not an exhaustive list:

  • Vitamin and/or mineral deficiencies
  • Diarrhea, constipation or a combination of the two
  • Nausea and vomiting
  • Migraine headaches
  • Fatigue and weakness
  • Weight loss
  • Bone and joint pain
  • Abdominal pain, bloating, gas

For more symptoms, please see the printable list from the Celiac Disease Foundation.

We also love this easy to read infographic:

Celiac Disease Symptoms

Celiac Disease Symptoms Courtesy of Gluten Dude

Diagnosis

If you are exploring the possibility of having Celiac Disease (CD), there are certain steps that your doctor will take with you.  At this point in time, most patients progress from a screening blood and/or genetic test with positive results to a bowel biopsy. 

The bowel biopsy has long been considered the gold standard for a definitive diagnosis of CD.  And since there are many other health issues that may affect a Celiac from cancer to infection, a baseline view of your bowel could diagnose other health issues that must be addressed with your health professional.

Prior to both the blood test for antibodies and the bowel biopsy, the patient must be eating gluten.  Otherwise, the test and biopsy may show as “normal” since the bowel will heal once gluten is removed completely from the diet and the body will no longer be producing antibodies to fight against the gluten.

Staying on a diet containing gluten is not required for the genetic test since it is not looking for antibodies but the genetic markers that indicate the potential to develop Celiac Disease.  The genetic test is not generally used to diagnosis Celiac Disease but more often to screen family members where one member has already developed CD.

Dermatitis Herpetiformis

Dermatitis Herpetiformis (DH) is a different form of Celiac Disease that affects the skin but is still an immune response to the proteins in wheat, barley, rye and their subspecies (known collectively as gluten).

Approximately 10% of those with Celiac Disease will have DH and it occurs most prevalently in males.  Adults generally are diagnosed between the ages of 25-45 but children and older adults may have Dermatitis Herpatiformis as well.

Symptoms of DH

The most obvious indication of Dermatitis Herpetiformis is a chronic skin condition with rash and/or blisters that may burn and itch.  These skin eruptions occur most commonly on the elbows, knees and buttocks but may also be found on the upper back, neck, scalp and hairline.

Dermatitis Herpetiformis may less commonly present as bowel complaints and most people with DH will have some damage to their gastrointestinal symptom just like Celiac Disease.

Diagnosis for Dermatitis Herpetiformis

DH is often misdiagnosed as other skin conditions such as eczema or psoriasis, among others.  Definitive diagnosis occurs with a skin biopsy of unaffected skin taken from a spot nearby to the affected skin.

What Causes Celiac Disease and Dermatitis Herpetiformis?

Diagnosis of Celiac Disease is on the rise due to the improved education of both the public and health professionals but it doesn’t totally explain the growing statistics of those with CD.  Like all autoimmune disorders, Celiac Disease is on the rise but there is no clear indication as to the cause of the disease.

Celiac Disease may run in families so it appears there may be some genetic link yet many CD patients have no family members affected. Celiac Disease may also occur more frequently in individuals with other conditions such as Type I Diabetes, Down syndrome, Addison’s Disease and others.

Like food allergies, there have been many studies lately about the causes and possible prevention.  Celiac Disease and DH may also fall under Hygiene Theory as discussed under Food Allergies.

Treatment for Celiac Disease and Dermatitis Herpetiformis

Once properly diagnosed with Celiac Disease or Dermatitis Herpetiformis, the only way to avoid the symptoms and subsequent damage is the complete and lifetime avoidance of gluten.

While the avoidance of wheat, barley, rye, triticale, spelt, kamut and other wheat subspecies may seem easy, in practice it can be difficult.  This is because gluten containing grains can be known under many different names such as durum, kamut or faro.  It is also because there are so many products that are made with these grains (such as beer or soya sauce) where you wouldn’t commonly expect to find gluten.

Because the list of names and products to watch for is so long, a detailed, printable pdf of what to avoid and where hidden gluten may be is available from The Center for  Celiac Research and Treatment.

 

Oats and Celiac Disease

It was long thought that those with Celiac Disease could not eat oats and avoidance was recommended.  However, with much research over the last decade, it is now commonly accepted that pure, uncontaminated (gluten free) oats are acceptable in moderation for most Celiacs. 

All of the Celiac non-profit groups across North America now have position statements regarding pure oats in the gluten free diet which can be accessed on their sites on the Resources page.  In addition, speaking to your doctor about when to add oats to your diet is advisable.

What are Gluten Free Oats?

Conventional oats are not the same as gluten free/pure, uncontaminated oats and must be avoided.  Conventional oats are farmed using traditional methods which have consistently demonstrated cross-contamination with wheat, barley and rye and their strains.

Gluten free/pure, uncontaminated oats follow extremely strict protocols and scientific testing from the field, seeds and planting all the way through to the dedicated oats mill.  They are more expensive because of the care that is taken with them but they are the only safe oat alternative for Celiacs.

If you pick up oats at the store and they do NOT say that they are gluten free or pure, Celiacs should avoid eating those oats.

Celiac Disease Research

Hookworms

Researchers in Australia had 20 diagnosed Celiacs infected with hookworms and then had them eat white bread for 21 weeks.  After that, their intestines were examined for the damage associated with gluten ingestion and it appears that those with the parasite fared dramatically better than those without the hookworms.  In fact, all of those Celiacs infected with the hookworms, elected to keep their parasites after the study rather than rid themselves via the appropriate prescription drug.

Pure Oats and G12

It is estimated that approximately 5% of Celiacs will react to even pure, uncontaminated oats.  The mechanism for this is not completely understood but recently researchers have discovered that certain varieties of oats have a chain of amino acids called G12 that cause reactions for Celiacs.

Many companies that offer gluten free oats are now testing their oats for the presence of G12 in order to offer varieties that reduce the possibility of reactions for that small population of oats affected Celiacs

Therapeutic Treatment for Celiac Disease

4 different companies are currently racing to be the first to have a therapeutic answer for Celiac Disease and all 4 are researching completely different ways to treat the disease:

  1. Development of an enzyme that will break down the gluten protein similarly to how the enzyme lactase breaks down lactose for those with lactose intolerance
  2. Development of a vaccine that will desensitize the body to the gluten protein
  3. Development of medication that works in the intestine to prevent leaky gut
  4. Development of a method to bind the gluten molecule so that it can’t hurt the intestine before it is eliminated from the digestive system