It’s incredible to me that considering the prevalence of gluten intolerance/celiac disease, SO few people are actually aware of it.Recent studies have revealed that 1 in 133 people are gluten-intolerant, and 1 in 100 have celiac disease. Isn’t that incredible?! (FYI: the main difference between gluten-intolerant and celiac-positive is simply the degree to which you have been effected, or the severity of your allergy, basically – and also includes whether or not you’ve contracted your gluten allergy genetically or not.)And yet, despite these figures, a friend of mine who recently went to her doctor for testing was informed that they “didn’t test for” and “didn’t really believe in” celiac disease. (!)To be fair, a few things should be acknowledged which inhibit the general population as well as (apparently!) some medical personnel from being well informed concerning this issue.1) Latency:
Gluten intolerance and Celiac Disease can lie dormant in your system for years. It IS genetic, but it is most frequently developed later in life after it is “triggered”.

“Various trigger factors have been reported. Some appear to have celiac disease triggered by the trauma of surgery. Women often develop symptoms after delivering a baby. Some celiacs report having a viral infection… the ‘viral infection’ continues for weeks until it is diagnosed as celiac disease. Severe psychological stress has also been reported as a trigger factor. Divorce, death of a loved one, or loss of a job can occur in proximity to the onset of the disorder.”

Common triggers include surgery, viral infection, severe stress, a hard fall or trauma to the body, pregnancy, or car accident/accident trauma in general.

“studies indicate that an adult
with Celiac Disease will remain undiagnosed
an average of eleven long years…
or longer…before discovering they have Celiac Disease.”

2) Confusion with IBS/other gastrointestinal disease/disorders
Because Celiac and gluten allergies are just now coming to the public eye, many doctors continue to misdiagnose celiac disease as IBS, or Irritable Bowel Syndrome.

“In cases where the main symptoms are non-digestive symptoms such as anemia and fatigue, the condition might be misdiagnosed, not as Irritable Bowel Syndrome (IBS), but as Chronic Fatigue Syndrome, depression, or even other fatigue-causing disorders.”

It doesn’t help that those with Celiac Disease are frequently dealing with at least one other autoimmune disease such as lupus, rheumatoid arthritis,
chronic fatigue syndrome, fibromyalgia syndrome, or multiple sclerosis, to name a few.

“Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.”

3) Negative/positive testing complications
If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.

If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine.

The other type of testing available (specifically to those who have not been eating gluten, and therefore will test negative for the disease) is genetic marker testing. This type of testing does not CONFIRM that you have Celiac disease, but it will confirm if you do NOT. How does that make sense? Well, certain genetic markers are present in the genes of those who have NO chance of developing Celiac’s. Thus, if you have these markers, you cannot develop Celiac disease.

4) Wheat free vs. gluten free
Wheat allergy is not the same thing as a gluten intolerance.

“We use gluten to refer to proteins found in any grains that can cause harm to persons with celiac disease. ‘Grains of concern’ refers to wheat, rye, barley and oats and their related species such as durum, spelt and kamut or their crossbred hybrids such as triticale, which is a cross between wheat and rye.”

Many people diagnosed with a wheat allergy may actually be gluten intolerant, and therefore (without cutting many other things from their diet separate from only wheat) will continue to be sick and develop food allergy symptoms.

All of these factors as well as many others have combined to cultivate a widespread ignorance, which is dangerous to the health and happiness of many.

Before looking at the dangers and implications of celiac disease, lets review the definition and symptoms.

“Celiac disease 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, found in wheat, rye, and barley [among other things]. Gluten is found mainly in foods but may also be found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins.

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.

Because the body’s own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed…

Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.”

So. There you have the definition. (And remember those villi… they come up later when we discuss lactose intolerance…)

Here are the symptoms:

“Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed…

Symptoms of celiac disease may include one or more of the following:

* gas
* recurring abdominal bloating and pain
* chronic diarrhea
* constipation
* pale, foul-smelling, or fatty stool
* weight loss/weight gain
* fatigue
* unexplained anemia (a low count of red blood cells causing fatigue)
* bone or joint pain
* osteoporosis, osteopenia
* behavioral changes
* tingling numbness in the legs (from nerve damage)
* muscle cramps
* seizures
* missed menstrual periods (often because of excessive weight loss)
* infertility, recurrent miscarriage
* delayed growth
* failure to thrive in infants
* pale sores inside the mouth, called aphthous ulcers
* tooth discoloration or loss of enamel
* itchy skin rash called dermatitis herpetiformis

A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.”

There you have it. Make sense? Not the best conversation-starters there, but hey… facts are facts. And our bodies let us know when something is bothering them. They were made to!

Having grasped these logistics, here are the basic facts on the health and lifestyle of someone with a gluten intolerance/sensitivity or celiac disease.

The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor usually will ask the person to work with a dietitian on a gluten-free diet plan… Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream.

Some people with celiac disease show no improvement on the gluten-free diet. This condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve the best results.

Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to receive nutrients directly into their bloodstream through a vein, or intravenously. People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease.”

But then… the obvious question. Can you cure it?
The answer is no… but don’t lose hope! Read the following:

“In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms…”

BUT… some people have been known to develop celiac disease, and then have it reversed later in life by the same sort of symptoms which trigger it.

Now, I’m not looking to go throw myself in front of another car, although I’m hoping that one day having a child of my own may juuuuust possibly reverse this disease.

But I am not living for that day – or putting all of my joy in that hope; and not only because I trust God!

Before you get discouraged, if you’ve identified with these symptoms, have a positive diagnosis, or know someone who does, let me assure you; going gluten-free is not easy, but it’s NOT the end of all things good and certainly not as restrictive as you might expect, particularly in this day and age.

In the next post, I plan to review not only what to AVOID, but all of the wonderful alternatives available for people like you and I.

Keep on keepin’ on!

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