<<Disclaimer: Verify this information before applying it to your situation.>>
Here are the comments in the order in which they arrived. There does seem to
be a need for something that has the particular aim of explaining CD/DH to
family, along with the importance of strict adherence, as well as risk info.
I did pick up a good brochure from IMMCO Diagnostics called 'Is Celiac
Disease threatening someone close to you?' Their site is
www.immcodiagnostics.com . It's a bit too technical but combined with some
of the others out there it could fit the bill.
-Michael Thorn
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Original message:
Does anyone have a short flyer that can be sent to relatives to explain
about CD and encourage them to get tested?
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CSA has wonderful brochures, but I'm not sure it encourages all to get
tested.
Be sure and order some. The first one in section F, and is free:
http://www.csaceliacs.org/order.html
{I didn't find anything that seemed to truly fit}
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Did you look at the reference files at our Web site?{the St. John's list
site}
{there is an excellent file...but it would handy in an abbreviated form as a
brochure..}
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Contact Celiac Disease Foundation either on their website <www.celiac.org>
or call at 818 990 2354. They have wonderful material that I am sure they
will be happy to send out.
----
I have the following information on file that explains this quite well:
Celiac disease is a digestive condition triggered by consumption of the
protein gluten, which is found in bread, pasta, cookies, pizza and other
foods containing wheat, barley or rye. Oats may contain gluten as well. When
a person with celiac disease ingests gluten, it provokes an immune reaction
in the small intestine, resulting in damage to the small intestine and an
inability to absorb certain nutrients from food.
Normally, your small intestine is lined with tiny hairlike projections
called villi. Resembling the deep pile of a plush carpet on a microscopic
scale, villi work to absorb vitamins, minerals and other nutrients from the
food you eat. Without villi, the inner surface of the small intestine
becomes less like a plush carpet and more like a tile floor, and your body
is unable to digest and absorb nutrients necessary for health and growth.
Instead, nutrients such as fat and protein are eliminated with your stool.
Eventually, poor absorption of nutrients (malabsorption) can deprive your
brain, nervous system, bones, liver and other organs of nourishment and
cause vitamin deficiencies that can lead to other illnesses. This is
especially serious in children, who need proper nutrition to develop and
grow.
Also known as celiac sprue, nontropical sprue and gluten-sensitive
enteropathy, celiac disease occurs in people who have a vulnerability that
makes them unable to tolerate gluten. It is thought to affect at least 1 in
500 people in the United States. Some speculate that celiac disease has been
around since humankind switched from a foraging diet of meat and nuts to a
cultivated diet that included high-protein grasses like wheat. Nonetheless,
it has only been in the last 50 years that researchers have gained a better
understanding of the condition and how to treat it.
Several conditions can cause malabsorption and may resemble celiac disease.
They include tropical sprue, Whipple's disease, giardiasis infection,
bacterial overgrowth and immunoglobulin deficiency. These conditions usually
are distinguished from celiac disease by their special features. They also
don't respond to a gluten-free diet.
Dermatitis herpetiformis is an itchy, blistering skin disease that also
stems from gluten intolerance. The rash usually occurs on the elbows, knees
and buttocks. Dermatitis herpetiformis can cause significant intestinal
damage identical to that of celiac disease. However, it may not produce
noticeable digestive symptoms. This disease is treated with a gluten-free
diet, in addition to medication to control the rash.
Signs and Symptoms
There are no typical signs and symptoms for celiac disease. Most people with
the disease have general complaints such as intermittent diarrhea, abdominal
pain and bloating, or they may have no gastrointestinal symptoms at all. The
symptoms of celiac disease can also mimic those of other conditions, such as
irritable bowel syndrome , gastric ulcers , Crohn's disease , parasite
infections, anemia , skin disorders or a nervous condition.
Celiac disease may also present itself in less obvious ways, including
behavioral changes such as irritability or depression , stomach upset, joint
pain, muscle cramps , skin rash, mouth sores, dental and bone disorders, and
tingling in your legs and feet (neuropathy).
Some indications of malabsorption that may result from celiac disease
include:
Weight loss
Diarrhea
Abdominal cramps, gas and bloating
General weakness
Foul-smelling or grayish stools that may be fatty or oily, including stools
that float
Stunted growth (in children)
Causes
The exact cause of celiac disease is unknown. What is known is that the
disease is often inherited. If you have it, chances are 10 percent of your
immediate family has it, too. It can occur at any age, although symptoms
don't appear until gluten is introduced into the diet.
Many times, for unclear reasons, the disease emerges following some form of
trauma: an infection, pregnancy, severe stress, physical injury or surgery.
Risk Factors
Although celiac disease can affect anyone, it tends to be more common in
people of European descent and people with other autoimmune disorders, such
as lupus erythematosus, type 1 diabetes (formerly called juvenile or
insulin-dependent diabetes), rheumatoid arthritis or autoimmune thyroid
disease.
When To Seek Medical Advice
If you notice or experience any of the signs or symptoms common to celiac
disease for more than 7 days, see your doctor. He or she can help diagnose
the problem and find appropriate treatment. You should also seek medical
attention for an infant who is pale, irritable, fails to thrive and who has
a potbelly, flat buttocks and malodorous, bulky stools.
Screening And Diagnosis
People in the United States aren't screened for celiac disease on a regular
basis, but in countries such as Italy, where the condition is common,
children are screened by age 6. Italians are also tested as soon as they
show symptoms. If someone in your family is known to have celiac disease,
you may need to be tested. This will help you avoid complications associated
with not treating the disease.
Because people with celiac disease carry higher than normal levels of
certain antibodies, a blood test can help diagnose the problem. To confirm
the diagnosis, your doctor may remove (biopsy) a small portion of intestinal
tissue to check for damage to the villi. The tissue is generally obtained by
threading a thin, flexible tube (endoscope) through your mouth, esophagus
and stomach into your small intestine and taking a sample of intestinal
tissue.
Observing the results of a strict, gluten-free diet also can confirm a
diagnosis, but it's important that you not go on such a diet before seeking
a medical evaluation. Doing so may change the results of blood tests and
biopsies so that they appear to be normal.
Complications
Because of damage to your small intestine from gluten, foods that don't
contain gluten also may cause abdominal pain and diarrhea. Some people with
celiac disease aren't able to tolerate milk sugar (lactose) found in dairy
products, a condition called lactose intolerance. If this is the case, you
need to limit food and beverages containing lactose as well as those
containing gluten. Once your intestine has healed, you may be able to
tolerate dairy products again. However, some people continue to experience
lactose intolerance despite successful management of celiac disease. If
you're among this group, you'll need to limit or avoid products that contain
lactose indefinitely. You may want to consider an over-the-counter lactase
enzyme medication such as Lactaid or Dairy Ease to help your body better
digest lactose.
Left untreated, celiac disease can lead to malabsorption, which in turn can
lead to malnutrition. Because vital nutrients are lost in the stool rather
than absorbed in the bloodstream, malabsorption can cause a deficiency in
vitamins A, B-12, D, E and K, and folic acid. With continued loss of fat in
the stool, calcium may be lost in excessive amounts, resulting in two
further complications: a certain type of kidney stone (calcium oxalate
stone) and a bone disorder called osteomalacia - a softening of the bone
also known as rickets in children. Malnutrition can cause stunted growth in
children and hinder their development.
People with celiac disease who don't maintain a gluten-free diet also have a
much greater chance of getting one of several forms of cancer, especially
intestinal lymphoma. Other long-term complications include anemia ,
osteoporosis , seizures and peripheral neuropathy .
Treatment
Celiac disease has no cure, but you can effectively manage the disease
through changing your diet. Once gluten is removed from the diet,
inflammation in your small intestine will begin to subside, usually within
several weeks. At first you may need to take vitamin and mineral supplements
recommended by your doctor or a dietitian to help correct nutritional
deficiencies. Significant healing and regrowth of the villi may take several
months in younger people and as long as 2 to 3 years in older individuals.
Improvements from eating a gluten-free diet may be especially dramatic in
children. Not only do their physical symptoms improve, but also their
behavior often improves and their growth starts to pick up.
*Support summarization of posts, reply to the SENDER not the Celiac List*
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