Tri-County Celiac Support Group (TCCSG- Serving Southeastern Michigan)

       
What is Celiac Disease?
            
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Celiac Disease (CD) is a life-long autoimmune disorder of the intestinal tract, which may have its onset in childhood or adulthood. (Celiac Disease occurs with greater incidence in persons with other autoimmune disorders.) The disorder is characterized by sensitivity to the predominant wheat protein, gluten (or more specifically, the gliadin portion of the molecule). The disease varies in severity with classic symptoms of malabsorption noted in some persons while others remain completely asymptomatic. The disease has also been known as celiac sprue, nontropical sprue and gluten sensitive enteropathy. It is a genetic condition in which the immune system damages the small intestine when gluten enters the digestive system. The body produces immune cells, which damage the villi. The villi in a healthy intestine have the appearance of a deep pile carpet. All these villi give the small intestine enormous absorptive surface.


Gluten

Gliadin, a protein portion of gluten, is the specific offender. Gluten is found in wheat, oats, rye, barley, triticale, kamut and spelt. A gluten-free diet is not simply avoidance of bread and pasta. Starch, flour or additives from the toxic grains are added to many prepared foods and some medications. The additives, malt, malt vinegar, hydrolyzed vegetable/plant protein; alcohol and dextrose (among others) may be made from the toxic grains and must also be avoided. Corn and rice and their byproducts contain no toxic gluten and are considered safe. Pharmaceuticals, particularly those used regularly, need to be inspected for gluten content.


Complications of CD

The disease usually is worse in the first portions of the small intestines. When only the top of the small intestine is smooth (flattened villi), gastrointestinal symptoms may not be present. There may or may not be discomfort, bloating or gas, possibly no diarrhea and/or constipation. The presentation of CD is very serious (in spite of no intestinal symptoms) because many nutrients are absorbed in this area of the digestive system. Vitamin B1 and B12 (numbness in extremities), Iron (anemia), Folic Acid (birth defects), Calcium and Vitamin D (bones and muscles), Vitamin E (nerves), Vitamin A (eyes) and Vitamin K (blood clotting) may be malabsorbed. That is, the nutrients from food and supplements are not absorbed properly. When a larger portion of the small intestine is damaged, gas, bloating and discomfort can be present in addition to the malabsorption of nutrients. Until recently diagnosis was made when much of the intestine had been damaged, diarrhea and wasting appear in addition to malabsorption of nutrients. Additional explanation of the complications of malabsorption include (besides weight loss, vitamin and mineral deficiencies) coagulopathy, osteopenia, bone fractures, lymphocytic gastritis and lymphocytic colitis/intestinal strictures and ulcerations may occur. Other complications include refractory and collagenous sprue as well as malignancy. There is a three to four-fold increased incidence of all malignancies among undiagnosed celiacs, half of which occur in the intestinal tract. Of those, there is a particularly high incidence of enterocyte associated T cell lymphoma of the small intestine (EATL). This is very difficult to diagnose and warning symptoms may include unexplained or worsening diarrhea, weight loss and abdominal pain. There is also a much greater incidence of adenocarcinoma of the small intestine. The risk of malignancy returns to that of the general population after five years of maintaining a gluten-free lifestyle.

Untreated Celiac Disease will also negatively affect pregnancy outcome with relative incidences of spontaneous abortion and low birth weight being nearly nine and six times higher respectively. These improve markedly in treated celiac patients with unexplained neurologic dysfunction. Depression possibly associated with B6 deficiency, and impaired brain availability of tryptophan has been reported.



Some Side Effects Caused by Malabsorption
Bone disease
Joint and bone aches
Anemia
Chronic fatigue
Hyperactivity
Attention deficit
Ataxia (stumbling gait)
Eye problems
Birth defects when mother has undiagnosed CD
Short stature in children
Muscle weakness and cramps
*Lactose intolerance
Edema (swelling)
Personality change
Neurological disorders
Spinal cord lesions
Dental enamel defects
Numbness and tingling of fingers and toes

*Lactose Intolerance: If you recently found you have Celiac Disease, you are likely to also have lactose intolerance (inability to digest milk sugar). Fortunately, for most people, this will clear up after 2-12 months on a gluten-free diet.

For lactose intolerance, talk to your doctor or registered dietitian about recommended diet. Many people can still eat yogurt and hard cheeses but have to limit the milk in the diet. Others with sever lactose intolerance need to eliminate all foods, supplements and medications that contain lactose.


Associated Auto-Immune Disorders

Autoimmune diseases are a broad category of related diseases in which the person's immune system attacks his/her own tissue. The ability to develop an autoimmune disease is determined by a dominant genetic trait that is very common and may present in families as different autoimmune diseases within the same family. It is important for families with members who have autoimmune diseases to mention this fact when another member of the family is experiencing medical problems that appear to be difficult to diagnose (such as CD). There are just a few of many of the more familiar autoimmune disorders:

Lupus
Multiple Sclerosis
Pernicious anemia
Graves' disease
Myasthenia gravis
Sjogren's syndrome
Insulin dependent diabetes
Scleroderma
Rheumatoid arthritis
Addison's disease
Primary biliary cirrhosis


Diagnosis

Diagnosis of Celiac Disease should be considered when symptoms or laboratory findings indicate Celiac Disease could be an explanation of the person's health condition. A reliable assessment of gluten sensitivity is a Celiac Disease evaluation panel (of blood tests) which includes:

IgG and IgA Gliadin Antibodies (AGA) IgA Endomysial Antibodies (EmA)IgA Reticulin Antibodies (ARA)

These studies, whether positive or negative, are only suggestions and reasonably predictive of the possibility of Celiac Disease. Confirmation or exclusion of the disease requires a biopsy of the small intestine. The biopsy is usually performed through an endoscope - commonly done under sedation - in which a flexible tube is passes through the mouth into the small intestine where several biopsies are obtained. It is still advisable to obtain annual CBC, biochemical panel, iron levels, B12, folic acid and vitamin D-250H. A one-year post-treatment biopsy is important in establishing a new baseline, as all patients do not heal completely in spite of strict adherence to the diet. Bone densitometry at the time of diagnosis and periodically thereafter is important - particularly in female patients. Celiac antibodies may be helpful in monitoring some patients, particularly those in whom noncompliance is suspected.

It should be stated also that first-degree relatives of celiacs should also be screened since Celiac Disease is a genetic disease.


Treatment

A life-long adherence to a gluten-free diet.


Doctors

This is a very under diagnosed disease because the symptoms are so varied. Until recently, only persons were diagnosed with Celiac Disease who presented with the most severe gastrointestinal symptoms such as diarrhea and weight loss.

Currently, Celiac Disease experts advise that all the listed SIDE EFFECTS, ASSOCIATED AUTOIMMUNE DISORDERS and the FAMILY HISTORY should be considered diagnosis.

Tri-County Celiac Support Group Contributions by Thomas J. Alexander, M.D.

Experts from "You May Also have Lactose Intolerance" by The American Dietetic Association

 




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