When a person has received a diagnosis of celiac disease, it can be exceedingly challenging and overwhelming. While it may sound simple to eliminate gluten from ones diet, it often comes with a large learning curve. Celiacs are told to eliminate all foods that contain wheat, barley, oats (other than specifically gluten free oats), rye, spelt, kamut, triticale and semolina. Where it becomes increasingly difficult is in identifying hidden sources of gluten. Often gluten will hide in processed foods, alcohol, sauces and beauty products — places many new Celiacs wouldn’t think to look. Many new Celiacs may not know that the first ingredient in soy sauce is wheat. Or that gluten is used on the glue of postage stamps and envelopes, and in many brands of lipstick.

Cross contamination is another big problem for people with celiac disease. For example, a person with celiac disease can not toast a piece of gluten free bread safely, if the toaster they are using has had gluten-based breads in it prior. Understanding how to effectively eat a gluten free diet takes time. There is not one person with celiac disease out there who has legitimately been ‘gluten free’ since starting a gluten free diet! This is because cross contamination accidents happen, and the learning curve with this disease is steep.

In addition to learning about how to protect your diet from gluten, most Celiacs will eat at restaurants that offer gluten free options. While today it is substantially easier than it was even five years ago to eat gluten free in a restaurant, it is still not entirely safe. Unless a gluten free meal is being made in an exclusively dedicated gluten free kitchen, there are opportunities for cross contamination. Even the most vigilant Celiacs will most likely be accidentally ingesting gluten a few times a year by mistake.

It is my belief, that a comprehensive routine of nutritional supplements is essential. I take the Celiac Pack from Richard Helfrich to aid in healing my GI tract. I also take probiotics each day. Wherever you decide to get your supplements from, ensure that they are gluten free, and high quality. A low quality / cheap supplement will do very little to help you.

Nearly everyone with celiac disease has one of two versions of a cellular receptor called the human leukocyte antigen, or H.L.A. These receptors, the thinking goes, naturally increase carriers’ immune response to gluten.

There are two factors when looking at celiac disease — one a protein, another genetic. Celiac disease is an exclusively genetic disease, meaning that in order to have the disease, one must have a genetic predisposition to it. Roughly 30 percent of people with European ancestry carry predisposing genes. Yet more than 95 percent of the carriers tolerate gluten just fine.

We know that an estimated 1 in 133 Americans have celiac disease, of that 1% of the population, it is estimated that 83% of them are undiagnosed or misdiagnosed with other conditions. Not only is celiac disease difficult to diagnose based on the vast array of symptoms associated with the disease, but there are other factors that can make diagnosis very difficult:

1. One of the biggest reasons for lack of diagnosis and misdiagnosis is that testing for celiac disease is not a simple process. Firstly, testing can be expensive and many insurance carriers will not cover the cost. To help diagnose celiac disease, physicians first test blood to measure levels of certain antibodies. These antibodies are: The anti-tissue transglutaminase (tTG), The anti-endomysium(EMA), and The anti-deamidated gliadin peptides (DGP). A positive antibody test suggests that a person might be Celiac, but this is not always considered a conclusive test; a biopsy will be needed to confirm the diagnosis. Note that all of these tests can return a false negative if a person has ceased to ingest gluten for a sufficient amount of time before taking the test. This can be very challenging for someone who has felt dramatic relief by subscribing to a gluten free diet, prior to be officially diagnosed.

2. Another widely-believed reason that celiac disease is grossly under diagnosed is that there are no pharmaceutical treatments for the disease. A gluten free diet in combination with proper ongoing naturopathic supplementation, are the only ways that a person with celiac disease will find recovery.  With no drug remedies, celiac disease often gets cast aside by diagnosing physicians, and instead, drugs are prescribed to treat the symptoms of celiac disease instead.  The process of treating symptoms (that would most likely resolve on their own if a gluten free diet was adhered to), can go on for a long time before the patient and/or doctor makes a correct diagnosis.

3. Celiac Disease is a genetic condition, but the gene can lie dormant. According to the Mayo Clinic, “Many times, for reasons that are unclear, the disease emerges after some form of trauma - an infection, physical injury, stress of pregnancy, severe stress or surgery”.  Many Celiacs will live their life with zero aversion to gluten, and following some kind of physical or emotional trauma (such as a car accident or child birth), will suddenly find that they display symptoms of celiac disease. Not all people with this disease actively have it since birth.

4. The asymptomatic, or ‘silent’ Celiacs make diagnosis difficult. In the landmark prevalence study (provided by the University of Chicago Celiac Disease Center) on celiac disease, investigators determined that 60% of children and 41% of adults diagnosed during the study were asymptomatic.

5. Even though Celiac Disease is genetic, a fist degree relative does not have to have it. Only 1 in 22 people with Celiac Disease have a first-degree relative (father, mother, brother) with the disease. 1 in 39 people have a second-degree relative (aunt, uncle, cousin) with the disease.  It can become difficult to obtain a complete family history that reveals whether or not someone is genetically predisposed to celiac disease.

6. Environmental factors triggering celiac disease. Over the past three decades, researchers have made significant headway in identifying both genetic and environmental factors that they believe contribute to celiac disease, and have concluded that celiac disease most likely results from an interaction between the two. Gluten is a well-known environmental factor for celiac disease. Dr. Peter Green of the Celiac Disease Center at Columbia University, believes that the enhanced amounts of gluten in our diets and, especially, the excess exposure to heavily processed forms of gluten may contribute to the increasing rates of celiac disease. There is even speculation that natural vs. cesarean birth could be a contributing factor in the development of celiac disease. This field of research, while vastly growing, is still inconclusive and therefore leaves a big question mark when trying to understand exactly why an individual has celiac disease.

According to a 2009 study, celiac disease touches more than four times the number of people it had in the 1950s. It is also estimated that the celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009).  As the medical community and those who are affected by celiac disease, continue to spread awareness of the disease, the demand for gluten free food, better diagnostics and more readily available information, will continue to grow.

Written by The Healthy Celiac for Richard Helfrich.com | content also published on richardhelfrich.com

This damage to the small intestine is just part of the damage encored to the body as a result of celiac disease. As a Celiac continues to consume gluten, the entire body enters an inflammatory response. Celiac disease is an autoimmune disease, meaning that when gluten is consumed, the body lunches an immune attack not only on the small intestine, but on other parts of the body as well. Essentially, the body is attacking itself. However, for most people with celiac disease, the symptoms do not end with the small intestine.

First, there are usually a host of digestive symptoms happening as a result of the immune attack:

• abdominal bloating and pain,  usually lasting 4-12 hours
  
• chronic diarrhea, which can persist for days following the consumption of gluten
  
• vomiting, usually immediately following the consumption of gluten
  
• constipation, which can persist for days or weeks following the consumption of gluten
  
• pale, foul-smelling, or fatty stool
  
• weight loss
  
• weight gain 
  
  

Each time a person with celiac disease consumes gluten, their digestive system takes anywhere from a few days to a few months to recover, depending on the state of their health before consuming gluten.  The gastrointestinal component of celiac disease is only part of the picture. Once a Celiac consumes gluten, and an auto immune reaction commences. There are a vast number of other systemic reactions that are triggered by the intestinal reaction that can occur. Some of these symptoms include:

• fatigue, lasting days to months
  
• bone or joint pain, often mimicking symptoms of arthritis
  
• depression or anxiety
• trouble concentrating (brain fog)
  
• tingling and numbness in the hands and feet
  
• seizures
  
• dry eyes
  
• canker sores inside the mouth
  
• an itchy skin rash called dermatitis herpetiformis
  
• hair loss, due to lack of nutrient absorption
  
• migraine headaches as well as generic headaches
  
• missed menstrual periods
  
• lactose intolerance
  
• heartburn
  
• discoloration of teeth
  
• false feelings of hunger, due to lack of nutrient absorption 
  
  

The long term effects of a person with Celiac Disease consuming gluten are:

• bone density problems
  
• delayed growth in children
  
• the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS)
  
• anemia
  
• osteoporosis
  
• miscarriages and infertility
  
• epilepsy
  
• vitamin and mineral deficiencies
  
• central and peripheral nervous system disorders
  
• intestinal lymphomas and other GI cancers
  
• gall bladder malfunction
  
• Sjögren’s Syndrome
  
• Ulcerative Colitis and Microscopic Colitis, which effects the large intestine and bowel
  
• Idiopathic Dilated Cardiomyopathy
  
• Crohn’s Disease, which effects the lower intestine and bowel
  
• autoimmune Hepatitis
  
• autoimmune Thyroid Disease (Graves/Hashimoto’s)
  
• Addison’s Disease
  
• intestinal lymphoma
  
• small bowel cancer
  
• pancreatitis
  
  

Different Symptom Behaviors of Celiac Disease

With such a vast multitude of symptoms associated with celiac disease, there are no two Celiacs who have the same long-term symptoms and effects. In fact, according to the University of Chicago Celiac Disease Center, only 1 in 56 people with celiac disease experience related or ‘text book’ symptoms. While some people with celiac disease have a large number of symptoms, others outwardly experience very few. 

On average, a person will wait 6-10 years to be correctly diagnosed with celiac disease. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center). Part of the reason for the delayed diagnosis is that celiac disease is a moving target of symptoms.

Regardless of the severity and frequency of symptoms, long-term damage to the small intestine still occurs no matter what. Here are the categorically different behaviors of celiac disease:

Typical Celiac Disease: Or what is generally what is being referred to as ‘celiac disease’. Those who were diagnosed based on a variety of intestinal and general symptoms, tend to fall into this category. These individuals are aware of their symptoms and ill effects as a result of consuming gluten. Diagnosis can take place as a child, or as an adult. Though not curable, celiac sprue disease can be treated with a gluten-free diet.

Atypical Celiac: Atypical celiac disease occurs when patients test positive for celiac disease, but they don’t have the obvious gastrointestinal symptoms. Instead, when someone has atypical celiac disease they tend to develop symptoms extra-intestinally, which means they develop symptoms beyond their gut. This includes migraines, ataxia, neuropathy, joint pain and more. Some researchers even believe celiac disease may manifest neurological symptoms more often than gastrointestinal symptoms.

Silent Celiac: Silent celiac disease generally begins in your adulthood and has no symptoms that can be seen or felt. The way you can tell if you have silent celiac disease is by having a blood test, followed by a biopsy of the small intestines. The blood test would show that antibodies are running in your bloodstream, and the intestinal biopsy test would confirm that the proteins from the gluten that was being ingested was eating away the tissue and the cells of the intestine abnormally. Silent celiac disease is treated by a gluten free diet.   

Refractory Celiac Disease: Refractory celiac disease occurs when your small intestine fails to heal and you continue to suffer from villous atrophy, even though you've been following a strict, careful gluten-free diet for a year or more. People with true refractory celiac disease, which is a very rare condition, are at much higher risk for serious complications, including a form of non-Hodgkin lymphoma associated with celiac disease. This condition is very rare and only 1.5 percent of all celiac disease patients develop refractory celiac disease.

Written by The Healthy Celiac for Richard Helfrich.com | content also posted on richardhelfrich.com

An estimated 1 in 133 Americans has celiac disease today. That is about 1% of the population, or 3 million people living in America. These figures are estimated to be on the rise as diagnostics and disease awareness become more prevalent in the United States. While not a terribly complex disease to understand physiologically, celiac disease can be an incredibly challenging disease to manage.

Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. Every time we eat, our pancreas secretes digestive enzymes that have the ability to break down our foods into molecules that our cells recognize. These enzymes are manufactured from proteins and need to be continually replenished. Each enzyme has a specific job, and works on a specific type of molecule. The main types of enzymes are lipases for digesting fats, carbohydrases for digesting carbohydrates, and proteases for the digestion of protein.

Gluten is a protein found in certain grains: wheat, rye, barley, spelt, kamut, semolina and triticale. Gluten is particularly resistant to digestion, and can play havoc with our digestive lining when your pancreas is not producing the proper enzymes to break down these proteins.

When people with celiac disease eat foods or ingest gluten through cross contaminated food containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats. However, typically, distestive upset is just one element of celiac disease.

*Written by The Healthy Celiac for Richard Helfrich.com | Content currently published on richardhelfrich.com