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What is Celiac Disease?

The name ‘Celiac’ or ‘Coeliac’ is derived from the Greek meaning “of, or in the cavity of the abdomen”.  The condition was named so, due to the many symptoms and effects related to the stomach (or the gastrointestinal tract). 

Celiac Disease (also known as coeliac, nontropical sprue, celiac sprue, gluten intolerant enteropathy, or gluten sensitive enteropathy) is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food.

People who have celiac disease cannot tolerate a protein called gluten, which is found in wheat, rye, barley and some oats.

When people with celiac disease eat foods containing gluten, their immune system responds by attacking and damaging the small intestine, specifically the villi. 

It is the villi that allow nutrients from food to be absorbed into the bloodstream.  These include vitamins, calcium, protein, carbohydrates, fats and other important nutrients.  Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.

Gluten is found mainly in foods, but is also found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins.

How common is it?

Celiac disease is a relatively common disease that many people don't even know they have because the symptoms are not severe and often mask themselves as those of other conditions.  Because of this, physicians often misdiagnose patients as having irritable bowel syndrome, food allergies, chronic fatigue, anorexia, or malnutrition.

The disease affects both sexes and can strike at any age.  It can develop from infancy (as soon as gluten associated foods are consumed) or at any time after that in later life (even though you may not have experienced any previous effects through consuming wheat and gluten).

The Celiac Sprue Association have reported that an estimated 1 in 4700 Americans are diagnosed as celiac, although according to a new study by the University of Maryland Center for Celiac Research in Baltimore, nearly one out of every 133 Americans are unknowingly living with the disease. 

According to the International Eating Disorder Clinic, celiac disease is the most common genetic disease across Europe.  In Ireland, about 1 in 150 people are reported to have celiac disease. 

However, many people are unaware of their condition because of the difficulties of diagnosis or mildness of symptoms.

If Left Untreated Celiac Disease Can Lead To Other Long-Term Conditions.

 

Where and when did it originate?

The earliest recordings of the illness were documented by a Dutch physician Vincent Ketelaer in 1669; however, at that time it was not known that gluten was the problem.  What he did notice was a failure to thrive in some children and the prominence of mouth ulcers which is where the word sprue originates from.  

It was not until Holland's supply of cereal grains became scarce after World War II (when they had to replace bread with vegetables), that some Dutch children, who it had been noted failed to thrive, started to improve in condition, gaining weight and strength. 

The link between celiac disease and diet was finally made when the supplies of cereal grain returned to normal and those same children started to show signs of deteriorating again.  In the experiments that followed, gluten was eventually identified as the reason.

 

What are the symptoms?

Despite its genetic links, the symptoms of wheat allergies, gluten intolerance, or celiac disease can vary widely and can come and go over time.  Celiac disease affects people very differently.  Individuals range from having no symptoms (asymptomatic or "latent" forms of the disease) to extreme cases where patients develop a number of symptoms.

In between these two extremes lie a wide variety of symptoms that you should be aware of:

  • Diarrhea
  • Constipation
  • Steatorrhea (fatty stools that float rather than sink)
  • Seizures
  • Excessive gas
  • Abdominal pain with stomach bloating
  • Chronic fatigue
  • Weakness
  • Weight loss
  • Bone and joint pain
  • Easily fractured bones
  • Muscle cramps
  • Including burning, prickling, itching or tingling
  • Edema
  • Headaches
  • Peripheral Neuropathy (tingling in fingers and toes)
  • Irritability and depression.
  • Mouth sores
  • Menstrual irregularities
  • Skin rash
  • Tooth discolouration
  • White flecks on the fingernails
  • Fuzzy-mindedness after gluten ingestion
  • Burning sensations in the throat

By identifying the fact that you have one or more of these symptoms and been correctly diagnosed as having celiac disease, allows you to accept and therefore manage the condition.

Is there a cure?

There is no prescriptive drug celiacs can take to effect a cure.  If you stick to the correct diet, repair to the intestine will begin within days, complete healing, with the villi intact and working can take place in 3 to 24 months depending on age and previous damage. This means avoiding all products derived from wheat, rye, barley, oats, and a few other lesser-known grains.

Extra vitamins may be taken, if necessary, but the only way for a celiac to avoid damage to their intestinal villi and the associated symptoms, is by maintaining a gluten-free diet.

What are the long-term effects of celiac disease?

Early diagnosis of celiac disease is very important to avoid the onset of chronic conditions later on in life.  Listed below are some of the possible long-term conditions if left untreated:

  • Organ disorders (gall bladder, liver, and spleen), and gynaecological disorders (like loss of menstruation and spontaneous abortions).  Fertility may also be affected.
  • Problems relating to malabsorption, including osteoporosis, tooth enamel defects.
  • Iron deficiency (anemia).
  • Osteoporosis.
  • Vitamin K deficiency associated with risk for haemorrhaging.
  • Vitamin and mineral deficiencies.
  • Central and peripheral nervous system disorders usually due to unsuspected nutrient deficiencies e.g. abnormal or impaired skin sensation (paresthesia).
  • Pancreatic insufficiency.
  • Lactose intolerance.  Lactose is a sugar found in dairy products. To be digested it must be broken down by an enzyme called lactase.  Lactase is produced on the tips of the villi in the small intestine.  Since gluten damages the villi, it is common for untreated celiacs to have problems with milk and milk products.  A gluten-free diet will help to eliminate lactose intolerance. 
  • Greater chance of getting certain types of cancer, especially intestinal lymphoma.
  • thyroid disease
  • systemic lupus erythematosus
  • type 1 diabetes
  • collagen vascular disease
  • rheumatoid arthritis
  • Sjögren's syndrome
     

 

What other related conditions are there?

Many related medical problems should also benefit by adopting a gluten-free diet.  Always remember to consult your physician before adopting a gluten free diet.  Never self-diagnose.

  • Dermatitis Herpetiformis (DH).  This is a chronic skin condition, which is another form of celiac disease.  It is characterised by an itchy, burning, blistering skin rash.  The rash has a symmetrical distribution and is most frequently found on elbows, knees, upper back, neck and buttocks. 

A small bowel biopsy of a person with DH will show the identical intestinal damage as seen in celiac disease.  However, the symptoms experienced are less severe.  Often, persons with DH have no bowel complaints.  DH patients can have gastro-intestinal damage without perceptible symptoms.

Genetic factors, the immune system, and sensitivity to gluten, play a role in this disorder.  The precise details remain unknown.  Diagnosis is obtained by a skin biopsy from a lesion.

 

  • Insulin-dependent Diabetes Mellitus.
  • Thyroid Disease.
  • Systemic Lupus Erythematosus.
  • IgA Nephropathy & IgA Deficiency.
  • Autism.
  • ADD (Attention Deficit Disorder).
  • Rheumatoid arthritis.

 

What is the difference between being a celiac and being wheat intolerant?

If someone suspects they are wheat intolerant, they should initially be tested for celiac disease.

By removing wheat form the diet you could mask celiac disease without treating it. Wheat intolerance is quite rare, is more likely to affect young children and may be a temporary problem, unlike celiac disease which is permanent.

Associated symptoms of wheat intolerance may include eczema and other skin irritations but it does not affect the immune system.

Celiac disease, on the other hand, is known as an autoimmune disease because the presence of gluten in a celiac's diet causes an immune reaction.

 

I think I may have an intolerance to gluten. What now?

You should NOT begin a gluten-free diet before a diagnosis is made. Doing so will alter future testing for the disease. Speak with your doctor and arrange for a diagnosis.

Upon diagnosis, seek consultation from a registered dietitian with a specialty in celiac disease and the gluten-free diet. A support group is also a great way to help you cope with the disease and diet.

To find out if you have celiac disease you must, as part of the diagnosis, be consuming gluten. 

Celiac disease is diagnosed by:

  • Blood test screening.

  • A biopsy of the small intestine.

  • A dietary trial of gluten elimination.

The blood tests have been developed to help identify certain antibodies produced by the immune system in response to gluten. 

It is recommended that patients with positive antibody tests have a small bowel biopsy to confirm the diagnosis and assess the degree of mucosal damage. 

This biopsy can be done in either of two ways both of which, although sound unpleasant, are simple, painless procedures, which do not require an operation:

  •       The tip of a small flexible tube can be passed through the mouth down into the stomach to the small intestine; a tiny knife at the tip of the tube then collects a biopsy.  The use of an x-ray is needed to guide the tube.

  •        Alternatively, an endoscope, which allows the doctor to see, can be passed through the mouth down into the stomach to the small intestine without need for x-ray to obtain biopsies in the small intestine.

If the diagnosis is positive the patient should be monitored to test their response to a gluten-free diet.

In essence, the diagnosis of celiac disease includes:

  •       A suspicion of celiac disease based on symptoms, physical appearance, delayed growth, or a genetic link.

  •       A positive blood test.

  •       A biopsy from the small intestine, which shows damage to the villi.

  •       A DEFINITE improvement of symptoms whilst adhering to a gluten-free diet.  This is confirmed by a follow-up biopsy obtained 4 – 6 weeks after starting on a gluten free diet.

You must follow a life-long gluten-free diet. This allows the intestinal villi to heal. Foods, beverages, and medications that contain wheat, barley, rye, and possibly oats should be eliminated completely. You must read food and medication labels carefully to look for hidden sources of these grains and their derivatives. Since wheat and barley grains are found abundantly in today's diet, keeping to this diet is challenging. With education and planning, you will achieve the goal of healing.

Vitamin and mineral supplements may be prescribed to correct nutritional deficiencies.  Following a well-balanced, gluten-free diet is generally the only treatment required for staying well.

Is it necessary to have an intestinal biopsy to confirm the diagnosis of Celiac Disease?

Currently, the intestinal biopsy is the industry standard for the diagnosis of Celiac Disease, and therefore, is considered essential.

 

Do I need to repeat the biopsy once on a gluten-free diet?

If you are diagnosed based on positive serology and biopsy, and your symptoms improve once on a gluten-free diet, you do not need a follow-up biopsy.

What help is there for me?

There are numerous support groups available to you. Depending on where you are in the world, start by searching the internet for your nearest group.

This should be your first and best source of help and advice. Your local celiac support group will have information on recommended restaurants, retail outlets that supply gluten free foods, local related events and information.

More importantly, it gives you the opportunity to talk with and meet people, to share stories, tips, recipes etc. It's also nice to have a chat with someone without having to re-explain the whole celiac thing.

You need to educate yourself about the symptoms you are experiencing and the causes.  You should always keep abreast of the latest information on your condition, research, changes in food labelling and food manufacturing.

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