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Helping a West Point Graduate Connect the Dots Between Symptoms and Their Causes

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My mother, Cleo Libonati, RN, BSN was giving a presentation to medical school students at a major medical school in Philadelphia. The topic was “Identifying and Correcting Nutrient Deficiencies in Celiac Disease.”

A student approached her after the presentation. She was a tall, athletic looking woman with short blond hair. She introduced herself as Amanda and told Cleo she was afraid she might have to drop out of medical school. She said she was a West Point graduate, but no one could diagnose her.

She said she had constant gastrointestinal problems and fatigue. She couldn’t concentrate. Something was terribly wrong. She could feel it.

IBS Guidelines Should Include Screening for Celiac Disease

Guidelines for the treatment of IBS published by the American College of Gastroenterology include screening for celiac disease. These guidelines were established in 2008.

New IBS Guidelines Offer Treatment Ideas

American College of Gastroenterology Updates Recommendations for Irritable Bowel Syndrome
By Bill Hendrick

WebMD Health NewsReviewed by Louise Chang, MDDec. 19, 2008 — New guidelines have been issued by the nation’s gastroenterologists that are aimed at easing the abdominal pain, diarrhea, and other symptoms of irritable bowel syndrome (IBS), which afflicts millions of Americans.

The guidelines, issued by the American College of Gastroenterology, also offer hope to patients who’ve struggled with the condition and found satisfactory treatments lacking.

Celiac Awareness Month – Four Health Problems Not Often Related to Celiac Disease That Should Be

Celiac Disease causes hundreds of signs, symptoms, associated disorders and complications. Almost all of them can be improved, reversed or cured by removing gluten from the diet and treating the symptoms individually.

  1. Dental Defects – Most dental enamel defects occur as the teeth are forming. White spots, weakness, ridges and malformed teeth are due to nutrient deficiencies. These issues are frequently said to be caused by antibiotic usage, poor hygiene or genetics. This important article discusses Dental Enamel Defects in Celiac Disease. This article explains how Dentists Can Help to Recognize Celiac Disease.
  2. Muscle Weakness – We tend to get used to how we feel, so many people do not realize they are becoming weaker over time. Nutrient deficiencies due to celiac disease before and even after we adopt a gluten-free diet, if our diet is not sufficient, can lead to muscle weakness. It is important to understand Health in Depth: Muscle Weakness in Celiac Disease.

Study Finds 1 in 5 Children With Celiac Disease Sustain Intestinal Damage Even on a Gluten-Free Diet

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In a new medical study, researchers from MassGeneral Hospital for Children (MGHfC) and Boston Children’s Hospital (BCH) were surprised to discover that nearly one in five children with celiac disease sustained persistent intestinal damage, despite strict adherence to a gluten-free diet.1

Consistent With Results Seen In Adults

These findings are consistent with research in adults, which showed that more than 33 percent of adult patients on a gluten-free diet have persistent intestinal damage, despite a reduction of symptoms or the results of blood tests.

It Was Assumed That Intestinal Lining Healed In Children

Current guidelines for pediatric celiac disease patients recommend a single biopsy at diagnosis and follow-up blood testing to monitor recovery of the intestinal mucosa. It was assumed that intestinal mucosa (lining) healed in children after adopting a strict gluten-free diet and that the blood tests would accurately reflect whether healing was occurring or not. It appears this assumption was incorrect.

Sources:
  1. http://www.news-medical.net/news/20161130/Study-finds-1-in-5-pediatric-celiac-disease-patients-on-gluten-free-diet-sustain-persistent-intestinal-damage.aspx [↩]

The History of Celiac Disease

220px-Samuel_Jones_Gee_1881[1]The earliest description of celiac disease was recorded in the second century A.D. In 1888 Samuel Gee published a monograph on celiac disease that “to regulate the food is the main part of treatment … The allowance of farinaceous foods must be small … but if the patient can be cured at all, it must be by means of diet.”

In the early 1900’s a carbohydrate restricted diet was advocated where the only carbohydrates allowed were ripe bananas and rice. Then in the 1950’s Dr. W. K. Dicke published work reporting that celiac children improved dramatically during World War II when wheat, rye and

Can celiac disease be mistaken as autism? A boy whose “autism” was cured.

A five year old Canadian boy, diagnosed with severe autism, was cured when the true cause of his mental disorder was found to be celiac disease and he was treated with a gluten-free diet and nutritional supplements.

Photo originally posted to Flickr as "Jack"
Photo originally posted to Flickr as “Jack”

His autism was cured because he was never really autistic in the first place. He had celiac disease, an immune response to wheat, barley, rye and oats that damages the intestines leading to malabsorption of nutrients.

Gluten-restricted diets have become increasingly popular among parents seeking treatment for children diagnosed with autism.(1)

What if certain children who are diagnosed with autism actually have celiac disease?

Neurological disorders stemming from celiac disease have been widely documented in medical literature. Some of these conditions include poor balance, tremors, migraines, chronic fatigue, schizophrenia, epilepsy, apathy, depression, insomnia, behavioral disorders, inability to concentrate and anxiety.(2)

Many of these issues are due to nutritional deficiencies resulting from the intestinal damage that celiac disease causes. If caused by celiac disease, they improve once gluten is removed from the diet and the intestine heals and functions properly.

Genuis and Bouchard, researchers at the University of Alberta, recently published the case of the 5-year-old boy who had been diagnosed with severe autism at a specialty clinic for autistic spectrum disorders. After an initial investigation suggested underlying celiac disease and varied nutrient deficiencies, a gluten-free diet was instituted.(1) His diet and supplements were adjusted to secure nutritional sufficiency.

The patient’s gastrointestinal symptoms rapidly resolved, and signs and symptoms suggestive of autism progressively abated.(1)

This case is an example of a common malabsorption syndrome (celiac disease) associated with central nervous system dysfunction and suggests that in some cases, nutritional deficiency may be a cause of developmental delay.

Genuis and Bouchard recommended that all children with neurodevelopmental problems

Is Low Stomach Acid Making You Sick??

Low stomach acid is common in celiac disease and dermatitis herpetiformis.  It is also common in the general population, as well, affecting 50% of people age 60 years and about 80% by age 85 years.  Nevertheless, low stomach acid is not generally looked for as a cause of acute and chronic disorders that rob health with far-reaching effects.

Is Low Stomach Acid New?

No. Low stomach acid (hypochlorhydria), has been well investigated much of the past century in both the general population and those with gluten sensitivity. For example, a 1985 study investigating gastric acid secretion in 116 subjects with dermatitis herpetiformis found that 41% had low stomach acid and 26% were achlorhydric (no acid). Of those older than 50 years, 47% were achlorhydric. When compared to subjects with celiac disease, the frequency of achlorhydria was significantly higher in those with dermatitis herpetiformis than in those with coeliac disease. There was no correlation between achlorhydria and small intestinal villous atrophy (damage).

Why Is Low Stomach Acid Overlooked?

Failure to understand nutrition and malabsorption…an area of science that is barely taught in medical schools is a big factor. Also,

Were You Diagnosed with Gluten Sensitivity or Celiac Disease by a Doctor or Did You Figure It Out on Your Own?

do doctors understand gluten sensitivity or celiac diseaseIt is well documented that only a small minority of those with celiac disease are successfully diagnosed in a medical setting.

Gluten sensitivity, which we based on medical research and proposed in Recognizing Celiac Disease in 2007,  has only recently been accepted as a true medical condition. So we decided to hold an informal survey to see just how people are becoming gluten-free? How are they finding out that gluten sensitivity or celiac disease are the cause of their health problems and are doctors diagnosing them or are they figuring it out on their own?

We posted this question to our GlutenFreeWorks Facebook friends and here are their answers. Were YOU diagnosed by a doctor? Leave your comments below!