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[IPp] Re: celiac with diabetes Cindy for you

What is Celiac Disease?

Celiac disease is a genetic disease, which is in the body.  Someone who has
celiac may never have
any symptoms or they may have symptoms, which do not arise for a number of
years after the internal damage begins.   Symptoms have been known to appear
for the first time after severe stress, pregnancy,
viral infections and/or an operation.  Celiac is often found in people with
immune disorders such as insulin
dependent diabetes mellitus and a skin disorder called dermatitis

Celiac disease is a reaction of the bowel lining, which becomes damaged
after repeated exposure to wheat,
rye, oats, and barley (Gluten).  The damage from these glutens may develop
almost immediately or may not develop for almost ten years.  The inside
lining of the intestine is covered in "finger like" folds called
villi which  are required for absorbing food.  These villi are covered with
digestive enzymes.   The body reacts to the gluten and makes antibodies to
get rid of it, however, the antibodies damage the lining of the small
intestine.  When foods containing gluten are eaten, inflammation of the
intestinal lining occurs and the villi becomes damaged and "flat".  When the
intestinal lining loses these digestive enzymes and loses the ability to
break down and deliver food to the body, all foods will go through the
intestine undigested
and usually result in diarrhea.  These bowel movements usually appear to be
fatty, gray, and extremely foul
smelling.  The body loses fat and muscle and usually becomes thin yet
extremely bloated.  Sometimes there are no obvious signs of Celiac, and some
children may only notice stunted growth.

Because food and nutrients are lost in the stool, the person usually becomes
unhealthy mainly due to nutrient deficiencies.  Adults may also get an itchy
rash called dermatitis herpetiformis, which is also caused by the intake of
gluten.  The nutrients that the body can not absorb to maintain proper
health is protein, fat, carbohydrates, vitamins and minerals.  Grains are
made from carbohydrates that store protein and energy and help with healing,
bone, and muscle growth.  Gliadin is a protein found in wheat gluten.  The
gliadins, which are known to damage the intestine are wheat, barley, rye,
and sometimes oats.  Gliadins, which are safe to eat are rice, corn, and

If a gluten free diet is strictly followed, the intestine will begin to
heal.  It may heal completely or may be far too damaged to heal at all.   As
soon as a tiny piece of gluten is reintroduced to the diet the damage will
begin.  If left untreated, celiac disease can be life threatening.  It is
absolutely necessary to strictly follow the gluten free diet for life.

Incidence (Age of onset, groups affected, etc)

Celiac is a genetic disease, however the genes, which cause it, are unknown.
It is recommended that if a person has celiac that close relatives of this
person should also be tested.  Researchers believe that 10% of these
relatives also have celiac disease.

This disease can surface at any age.  It is frequently diagnosed in people
of all ages including young children, middle aged adults and seniors.  In
the past, Celiac was mainly diagnosed in young children,
however, due to increased awareness and improved diagnostic skills there are
more adults particularly aged 40-50 are being diagnosed.  Celiac is the most
common genetic disease in Europe.  The ratio of people diagnosed with celiac
to people whom are not diagnosed with celiac is fairly high.  In Italy,
there is 1 in every 250 people who have it and in Ireland, there are 1 in
300 people who have it.  It is rarely diagnosed in  African, Japanese, and
the Chinese cultures.  In the United States, it is estimated that 1 in every
4700 people are diagnosed with celiac, however, there was a random blood
test done by the Red Cross which suggested that there is a possibility that
1 in every 250 Americans may have it.  Statistics in Canada are not
overly available, however, it is believed that 1in every 2000 Canadians have
been diagnosed with celiac.

Some people who have certain diseases and conditions are at high risk of
being connected with celiac.
Some of these conditions are: Down's syndrome; Diabetes Mellitus; Dermatitis
Herpetiformis; Immunoglobulin; Thyroid Disease; Systamatic Lupis
Erythematosus; Liver Disease; Collagen Vascular Disease; Rheumatoid
Arthritis; and Sjogren's Syndrome.  The connection between these conditions
and Celiac Disease are genetic.

Signs and Symptoms

Celiac Disease has many different signs and symptoms.  All of these signs
can occur in other diseases, which are more common than celiac.  In both
children and adults, the symptoms may appear alone or together.  Sometimes a
person with celiac will have no common symptoms but may feel intestinal
burning and an itching rash called Dermatitis Herpetformis.  Some of the
common symptoms are anemia; chronic diarrhea; weight loss; fatigue; cramps
and bloating; irritability; poor growth; fatty, foul smelling stool;
behavior changes; and they often feel miserable and depressed.   Undiagnosed
infants are often irritable, and have fatty, pale, stool with a bad smell.
Teenagers and adults sometimes have hidden symptoms.  They may be tired due
to an iron deficiency anemia, may have bone pain, and be prone to fractures
caused by a calcium and vitamin D deficiency.  Sometimes they will feel some
gas and stomach pains.

Celiac disease often results in loss of nutrients which results in
deficiencies of calcium; vitamin D; magnesium; and/or potassium.  This
sometimes causes symptoms such as weakness, loss of muscle mass, sudden
contractions, loss of sensation, seizures, and a tingling sensation of pins
and needles.  Due to a vitamin A and B complex deficiency and lack of
protein , people with celiac sometimes experience problems with their skin
such as bruising, rashes, and swelling.  Iron and folate acid deficiencies
are the two most common nutritional deficiencies.  Celiac tends to cause
malabsorption and disturbance of the major hormones. This may cause
impotence, infertility, and missed menstrual cycles. Less than > of adults
with celiac haveany of the common symptoms.  This causes a delay in the
diagnosis.  The time from which the first damage to the intestine occurs
until signs and symptoms may occur and/or a diagnosis is made could be 7-10

Celiac is often misdiagnosed.  Some of the diseases that celiac is often
mistaken for are: Irritable Bowel Syndrome; Chronic Fatigue Syndrome;
Depression; Crohns Disease; Ulceratave Colitis; Diverticulosis and
Intestinal Infections.  After a person is diagnosed and has started the
required gluten free diet, there are signs and symptoms which will occur if
any gluten is eaten.  Any trace of gluten, which sneaks into the diet,  will
cause severe symptoms and/or damage to the small intestine.  The symptoms
may show up immediately within a 24 hour period or may not show up for 2-3
weeks.  When the symptoms do occur they may last from 1-10 days.  If the
person has no outward symptoms, this gluten will still damage the intestine.

Cause/ Risk Factors/Prevention

Celiac disease is genetic. Family members related to people with celiac
disease have a 5-10% chance of having the disease.  Gluten is a mixture of
complex proteins found in wheat, rye, barley, etc.  In some people the small
intestine reacts negatively to these proteins.  The intestines will become
inflamed, swollen and sore.  It will eventually break down and lose tiny
villi which absorbs the food.

Risk Factors:
 Often there is so much damage done to the intestinal wall that the person
may not be able to digest the sugars in milk and milk products. So the
person with celiac should refrain from having the milk products for about 4
weeks so that the intestine can heal. Some people with severe damage may
never be able to reintroduce milk products into their diets.

Some people go on the diet and feel perfectly fine after months or years.
They sometimes will go off the diet because they feel as if they are healed.
The complications such as nutrient deficiencies, pregnancy complications,
seizures and stunted growth will return.  There are many more risk factors,
which I will discuss more detailed further in the paper.

Prevention of many of these signs, symptoms and damage of celiac disease is
to be on a strict gluten free diet.  Many doctors will recommend vitamins
and supplements  are taken.   It is important to remember that some gluten
can be eaten.  Some of these glutens are rice, corn, buckwheat, soybean and
potato.  There is often hidden gluten in products, which either do not list
it or uses an unfamiliar title for it.  Reading all labels is extremely


When a person is experiencing signs and symptoms of celiac disease, it is
often misdiagnosed at first because it is believed to be another disease.
If a person believes that the doctor may be wrong with their diagnosis, they
should keep track of when signs and symptoms started, what happened, and any
family history of celiac disease or dermatitis herpetiformis. They should
also suggest to the doctor that they be tested for celiac disease. They
should never start a gluten free diet until after the blood tests and
biopsy. This can prolong diagnosis because once on the diet, the intestine
will begin getting better and may remain better for long period of time,
even after gluten has been re-added to the diet.  Also, people may "get
better" on a celiac diet and yet, not even have celiac disease. These
responses are still being questioned.

People with celiac disease will have fatty, foul smelling stool which show
signs of mal-digestion and mal-absorption.  The first test is a blood test
to check for anemia.  Until recently, a blood test called (EMA)
Ant-endomysial Antibody Test was done to detect for anti-bodies in the
blood.   This test does not prove that a person has the disease.  Some
people show antibodies but do not have celiac disease.  It was believed that
blood tests were strictly for screening and were often misleading.

There is a new blood test called Antiendomysial Antibody Test.   This test
detects antibodies for gluten in the body.  It is far more accurate then the
previous test.  Researchers believe that if the anitbodies don't show up in
the blood test, then it won't show up in the biopsy.  Still, a definite
diagnosis can only be made by a small bowel biopsy done by a
gastrointestinal specialist.  These tests need to be done while a person is
still taking gluten.

A biopsy includes easing a long tube called an endoscope through the mouth
and stomach to the small intestine.  The doctor will remove tiny samples of
tissues from the lining of the small intestine using instruments passed
through the endoscope.  Under a microscope, the lining will be studied to
detect any damage to the tissue.  The biopsy is often done with little
discomfort and no anaesthetic.  Once diagnosed the person is required to
immediately go on a gluten free diet for life.

Complications/Impact on family and client

Although persons with Celiac appear well, damage to the intestinal villi
will occur if even a small trace of gluten is eaten.  Some foods
unexpectantly contain gluten which can cause signs and symptoms to reoccur.
Five percent of  people with celiac get dermatitis herpetiformis, which is
painful, red, itchy, raised red blotches on elbows, knees, and buttocks.
This is most common in older people diagnosed with celiac . After the gluten
free diet is followed, the person also needs to take medications for several
months to help with the itch.  The medications however have been known to
have some side effects, which should be closely monitored by a doctor.
Also, if a gluten free diet is not followed, the risk of cancer is
increased. There may also be some scarring , due to the dermatitis
herpetiformis.  A few other complications of the disease, which may
eventually occur are miscarriages, stunted growth, seizures, and

 This disease impacts the family and the client.  It is not always easy to
know what is gluten free and what is not.  Hidden sources of gluten are
found in many things even some types of toothpaste.  It is difficult to find
places to purchase gluten free food and to find it at a reasonable price.
Recipes for gluten free foods are sometimes hard to come by and gluten free
recipes do not always turn out the way you might expect.

It is sometimes difficult to cope with developmental delays and behavioral
changes (especially in children) which are sometimes brought on by gluten
such as Autism, Asperger's, and Attention Deficit.
People who are unaware of the effects of gluten, often see children who have
had gluten slip into the diet accidentally, as disruptive, hyperactive, and

One of the main things, which impact both family and the client is eating
out because you do not know how the food is cooked, what it touches, or what
the ingredients are.  When eating out you need to ask the waitress to ask
the chef to check every thing.  Sticking to salad bars help, but isn't
always realistic or available.  Eating at Chinese restaurants is basically
out of the question because most of the food is prepared with soy sauce
and/or flour.  Fast food restaurants, such as McDonald's, are also out of
question because the only food which is gluten free are the french fries.
These french fries are often cooked in the same fat as the chicken nuggets
which are coated in gluten.  Even products as simple as the brand of ketchup
a restaurant uses, needs to be checked.

People with celiac disease often feel physical and psychological upset.
They may be cranky at times, which requires the family to be understanding
and patient.  People with celiac and the families may find it
difficult to come up with tasteful, interesting  foods.  This limits the
things you can bring for a family function or pot luck lunch.  Gluten free
products often taste very different from the food that most of us are used
to eating.  This can be a difficult change to get used to.

Treatment/Possible Outcomes

There is no cure for celiac disease.  It is life long, however, it can
usually be treated and controlled.
The treatment for celiac is a strict gluten free diet for life.  A dietitian
will help guide the person on what is safe to eat and what isn't. The
dietitian will also recommend a diet which is rich in nutrients to help
proper health.  A person with celiac has to be aware of hidden gluten in
products.  Some of these hidden sources of gluten are malt; spelt; kamut;
(HVP) hydrolyzed veg/plant protein and some medications.  For this reason,
all labels must be completely read before consuming.  Eating any gluten will
damage the intestine.

Diet will stop the symptoms and the intestinal damage will begin to heal
within days.  No further damage should occur unless gluten enters the diet.
The small intestine is usually healed completely in 3 to 6 months or up to 2
years in older adults.  A few people have severely damaged intestines by the
time the are diagnosed which do not improve on the gluten free diet.
Depending on the person's age, once on a gluten free diet, symptoms such as
tooth discoloration and stunted growth may improve.  A  person may have no
symptoms but the damage to the intestinal lining will still occur.  After
the diagnosis and the diet is started, the anemia may still be present and
will be treated.

There are other late complications which will occur if not on the gluten
free diet and which may still occur even after the treatment of the diet.
Some of these possible outcomes are:
1. Osteoporosis where the bones become weak, and brittle due to poor calcium
2. Miscarriage and Congential Malformation of babies such as neural tube
defects due to malabsorption of  nutrients.
3. Short Stature due to lack of nutrient absorption.  These children may be
able to "catch up" if treated before their growth stops.
4. Seizures/Convulsions due to lack of folic acid, which causes calcium
deposits, called calcisications to form in the brain and cause seizures.
5. Lymphomia and Adenocarcinoma which are types of cancer which develop in
the intestine.

The gluten free diet helps to eliminate these from occurring.  The most
important thing to do as a celiac is to follow the dietitians instructions
and stay on the diet for life.  If left untreated, the disease is life
threatening.  Central and peripheral nervous system disease, pancreatic
disease, internal hemorrhaging, organ disorders (gall bladder, liver,
spleen) are all life threatening.  The risk of certain types of cancer is
fifty to seventy times greater for an untreated celiac than for the normal

What You Can Not Eat On A Gluten Free Diet

Wheat, bulgar, durum, oats, barley, rye, triticale, spelt, semolina,
couscous, and strong flours, breads, brown, whole wheat or granary flour.
Macaroni/Spaghetti made from wheat, most baking powders, stock cubes and
gravy cubes, mustard powder, most soy sauce, vegetable starch, beer, stout
lager, wheat germ, vitamin E pills, canned soups, wieners, sausages, sliced
meats, root beer.


Some brands of rice paper are made using wheat flour. Sauce mixes, curry
mixes, ice cream, packet and canned soups, dried meals, gravy mixes, may all
contain wheat flour and do not always declare it on their contents.  Cloudy
lemonade and root beer contain wheat flour as well as sweets dusted with
flour to prevent sticking (ie: raisins).

Community Resources Available

There are some resources available in our community of Hants such as the
Windsor Library and the Hants Community Hospital which carry a few books and
pamphlets on Celiac Disease. Halifax has more resources available. There is
the Halifax Chapter of the Canadian Celiac Association, which you can call
at  (902-464-9222).  The IWK/Grace Health Center has resources available at
the Clinical Nutrition Department and you can reach them by fax at (902-428-
8826).  It is known that many thousands of Canadians belong to the Canadian
Celiac Association.

However, from experience, the most helpful resources available are from the
food companies themselves. By reading labels on the food packages, you will
find phone numbers and addresses for the companies.  Just write or phone
them and they will supply you with updated lists of gluten free products
they carry.

Some local stores that cater to celiac foods include:

Milk Oulton's Meat House (sausages) in Windsor
Grandma's Bakery (breads) in Windsor
Eos in Wolfville ( flours, breads, muffins, cereals, waffles, rolls,
cookies, brownie mixes)
Halifax Superstores and Bulk Barns
Kinnickkinnick- on the internet- all baked goods.

The biggest resource available is really the internet as many Celiac sites
can be found and have tons of information and recipes and chat groups
available to help you get what you need.

Possible Role of H.S.W. Relating to a Client with this Condition

If the H.S.W. is in a home for someone with Celiac Disease, they will
probably be there for meal preparations.  When planning and making meals,
the HSW needs to be aware of what the client can or can not have to eat.
All labels must be read.

The client will probably require a number of full course meals of meat,
vegetables, rice or potatoes, unless the client has bought special gluten
free foods such as spaghetti, noodles, cereals, breads, wieners, etc. The
H.S.W. needs to be aware of foods with gluten that they may not even think
about such as  ketchup, vinegar, soya sauce and drinks such as cloudy
lemonade and root beer.  When anything is made from the proper gluten free
flour, the H.S.W. must realize that a gluten free recipe must be followed
exact. This is because the flours are different and they have not the same
consistencies. It takes longer to cook gluten free recipes and a lot of
practice is necessary to have the recipes turn out properly.  The H.S.W.
needs to be very patient and understanding of the needs and feelings of the
celiac client.

This article is alot of imformation but one worth reading to educate oneself
on the problems of having celiac disease.
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