Update on doctor | Arthritis Information

Well, tests finally came back after a week (i like my family doctor, same tests come back in 3 days). And this is what they came up with.

There is no inflammation in my joints. I have a Rheumatoid Factor but no Rheumatoid Disease. I have high inflammation in various spots on my body including muscles in my shoulders, muscles around the elbow and write, muscles in the calves and tops of my feet.

After doing lots and lots of internet research I know she would come back and say "I don't know what it is".

So, that's the response, they think it's something new "wonderful".

They want to treat it like all inflammation disorders so i am "back" on methotrexate which is odd, this is the month last year that i got off of it because it made me worse.

I feel like one of those testing bodies in the medical schools, let's take this one apart and see what ticks.

It's already swelling me up more and causing diarea like before with just one dose.

I just feel like I will never get proper treatment and if this is a new thing, why haven't I been submitted as a testing dummy to researchers or does she not care?

All I know is i get worse when i take pills, eat spices like paprika and chili pepper, each night shades, milk, bread or eat processed foods. I also can't be around pesticide or cleaners, especially pinesol or i swell up and get asthma.

It's like a digestion problem and chemical exposure but she ignores that every time. Wish she wasn't the only doctor in this small town.

Oh well, maybe there is no cure type for me.

I do know that mycrohydrine plus and my digestive enzymes help me a bunch, so i still take those too.

I wish you all well and thanks for leting me vent. It's been about 2 years now and still no proper help.

It's time to bite the bullet and go to a big town for help. You have suffered enough. Get your primary doc to recommend a big town doctor and have him write up your case history. It'll carry more 'weight' if your primary writes your history than if you do. Once DX'd your primary can treat you while consulting with big town specialist.

Good Luck and Best Wishes Have you ever been tested for Celiacs disease. Its sounds like the foods
you are reacting to. May want to bring it up to your doctor. Here is an
article on it. Just a thought. Good luck

NIH Consensus Development Conference on Celiac Disease (2004)

Also see:
What I Need to Know About Celiac Disease

Celiac Disease and Osteoporosis
(from NIAMS)

Home : Digestive Diseases A-Z List of Topics and Titles : Celiac Disease

Celiac Disease

On this page:

What is celiac disease?
What are the symptoms of celiac disease?
Why are celiac disease symptoms so varied?
How is celiac disease diagnosed?
What is the treatment?
What are the complications of celiac disease?
How common is celiac disease?
Diseases Linked to Celiac Disease
Dermatitis Herpetiformis
Hope Through Research
Points to Remember
For More Information
Acknowledgments
What is celiac disease?

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. 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.

The small intestine is shaded above.

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.

Villi on the lining of the small intestine help absorb nutrients.

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 also known as celiac sprue, nontropical sprue,
and gluten-sensitive enteropathy.

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.

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What are the symptoms of celiac disease?

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. In fact, irritability is one of the most common
symptoms in children.

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. Anemia, delayed growth, and weight loss are signs of
malnutrition: The body is just not getting enough nutrients. Malnutrition
is a serious problem for children because they need adequate nutrition to
develop properly. (See Complications.)

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Why are celiac disease symptoms so varied?

Researchers are studying the reasons celiac disease affects people
differently. Some people develop symptoms as children, others as adults.
Some people with celiac disease may not have symptoms, while others
may not know their symptoms are from celiac disease. The undamaged
part of their small intestine may not be able to absorb enough nutrients
to prevent symptoms.

The length of time a person is breastfed, the age a person started eating
gluten-containing foods, and the amount of gluten-containing foods one
eats are three factors thought to play a role in when and how celiac
appears. Some studies have shown, for example, that the longer a person
was breastfed, the later the symptoms of celiac disease appear and the
more uncommon the symptoms.

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How is celiac disease diagnosed?

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.

Recently, researchers discovered that people with celiac disease have
higher than normal levels of certain autoantibodies in their blood.
Antibodies are protective proteins produced by the immune system in
response to substances that the body perceives to be threatening.
Autoantibodies are proteins that react against the body’s own molecules
or tissues. To diagnose celiac disease, physicians will usually test blood
to measure levels of

Immunoglobulin A (IgA)
anti-tissue transglutaminase (tTGA)
IgA anti-endomysium antibodies (AEA)
Before being tested, one should continue to eat a regular diet that
includes foods with gluten, such as breads and pastas. 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.
Using instruments passed through the endoscope, the doctor then takes
the sample.

Screening

Screening for celiac disease involves testing for the presence of
antibodies in the blood in people without symptoms. Americans are not
routinely screened for celiac disease. Testing for celiac-related antibodies
in children less than 5 years old may not be reliable. However, since celiac
disease is hereditary, family members, particularly first-degree relatives—
meaning parents, siblings, or children of people who have been
diagnosed—may wish to be tested for the disease. About 5 to 15 percent
of an affected person’s first-degree relatives will also have the disease.
About 3 to 8 percent of people with type 1 diabetes will have biopsy-
confirmed celiac disease, and 5 to 10 percent of people with Down
syndrome will be diagnosed with celiac disease.

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What is the treatment?

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. A dietitian
is a health care professional who specializes in food and nutrition.
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.

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. Depending on a
person’s age at diagnosis, some problems will not improve, such as
delayed growth and tooth discoloration.

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.

The web contains information about celiac disease, some of which is not
accurate. The best people for advice about diagnosing and treating celiac
disease are one’s doctor and dietitian.

The Gluten-free Diet

A gluten-free diet means not eating foods that contain wheat (including
spelt, triticale, and kamut), rye, and barley. The foods and products made
from these grains are also not allowed. In other words, a person with
celiac disease should not eat most grain, pasta, cereal, and many
processed foods. Despite these restrictions, people with celiac disease
can eat a well-balanced diet with a variety of foods, including gluten-free
bread and pasta. For example, people with celiac disease can use potato,
rice, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat
flour. They can buy gluten-free bread, pasta, and other products from
stores that carry organic foods, or order products from special food
companies. Gluten-free products are increasingly available from regular
stores.

Checking labels for “gluten free” is important since many corn and rice
products are produced in factories that also manufacture wheat products.
Hidden sources of gluten include additives such as modified food starch,
preservatives, and stabilizers. Wheat and wheat products are often used
as thickeners, stabilizers, and texture enhancers in foods.

“Plain” meat, fish, rice, fruits, and vegetables do not contain gluten, so
people with celiac disease can eat as much of these foods as they like.
Recommending that people with celiac disease avoid oats is controversial
because some people have been able to eat oats without having
symptoms. Scientists are currently studying whether people with celiac
disease can tolerate oats. Until the studies are complete, people with
celiac disease should follow their physician’s or dietitian’s advice about
eating oats. Examples of foods that are safe to eat and those that are not
are provided in the table below.

The gluten-free diet is challenging. It requires a completely new approach
to eating that affects a person’s entire life. Newly diagnosed people and
their families may find support groups to be particularly helpful as they
learn to adjust to a new way of life. People with celiac disease have to be
extremely careful about what they buy for lunch at school or work, what
they purchase at the grocery store, what they eat at restaurants or
parties, or what they grab for a snack. Eating out can be a challenge. If a
person with celiac disease is in doubt about a menu item, ask the waiter
or chef about ingredients and preparation, or if a gluten-free menu is
available.

Gluten is also used in some medications. One should check with the
pharmacist to learn whether medications used contain gluten. Since
gluten is also sometimes used as an additive in unexpected products, it is
important to read all labels. If the ingredients are not listed on the
product label, the manufacturer of the product should provide the list
upon request. With practice, screening for gluten becomes second nature.

The Gluten-free Diet: Some Examples

In 2006, the American Dietetic Association updated its recommendations
for a gluten-free diet. The following chart is based on the 2006
recommendations. This list is not complete, so people with celiac disease
should discuss gluten-free food choices with a dietitian or physician who
specializes in celiac disease. People with celiac disease should always
read food ingredient lists carefully to make sure that the food does not
contain gluten.

Allowed Foods

Amaranth
Arrowroot
Buckwheat
Cassava
Corn
Flax
Indian rice grass     Job’s tears
Legumes
Millet
Nuts
Potatoes
Quinoa
Rice     Sago
Seeds
Soy
Sorghum
Tapioca
Wild Rice
Yucca
Foods To Avoid

Wheat
Including einkorn, emmer, spelt, kalmut
Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat
protein
Barley
Rye
Triticale (a cross between wheat and rye)
Other Wheat Products

Bromated flour
Durum flour
Enriched flour
Farina     Graham flour
Phosphated flour
Plain flour     Self-rising flour
Semolina
White flour
Processed Foods That May Contain Wheat, Barley, or Rye*

Bouillon cubes
Brown rice syrup
Chips/potato chips
Candy
Cold cuts, hot dogs, salami, sausage
Communion wafer     French fries
Gravy
Imitation fish
Matzo
Rice mixes
Sauces     Seasoned tortilla chips
Self-basting turkey
Soups
Soy sauce
Vegetables in sauce
* Most of these foods can be found gluten-free. When in doubt, check
with the food manufacturer.
Adapted from the following resource: Thompson T. Celiac Disease
Nutrition Guide, 2nd ed. Chicago: American Dietetic Association; 2006.
Used with permission. For a complete copy of the Celiac Disease Nutrition
Guide, please visit www.eatright.org.

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What are the complications of celiac disease?

Damage to the small intestine and the resulting nutrient absorption
problems put a person with celiac disease at risk for malnutrition,
anemia, and several other diseases and health problems.

Lymphoma and adenocarcinoma are cancers that can develop in the
intestine.

Osteoporosis is a condition in which the bones become weak, brittle, and
prone to breaking. Poor calcium absorption contributes to osteoporosis.

Miscarriage and congenital malformation of the baby, such as neural tube
defects, are risks for pregnant women with untreated celiac disease
because of nutrient absorption problems.

Short stature refers to being significantly under the average height. Short
stature results when childhood celiac disease prevents nutrient
absorption during the years when nutrition is critical to a child’s normal
growth and development. Children who are diagnosed and treated before
their growth stops may have a catch-up period.

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How common is celiac disease?

Data on the prevalence of celiac disease is spotty. In Italy about 1 in 250
people, and in Ireland about 1 in 300 people, have celiac disease. Recent
studies have shown that it may be more common in Africa, South
America, and Asia than previously believed.

Until recently, celiac disease was thought to be uncommon in the United
States. However, studies have shown that celiac disease is very common.
Recent findings estimate about 2 million people in the United States have
celiac disease, or about 1 in 133 people. Among people who have a first-
degree relative diagnosed with celiac disease, as many as 1 in 22 people
may have the disease.

Celiac disease could be underdiagnosed in the United States for a number
of reasons including:

Celiac symptoms can be attributed to other problems.
Many doctors and health care providers are not knowledgeable about the
disease.
Only a small number of U.S. laboratories are experienced and skilled in
testing for celiac disease.
More research is needed to learn the true prevalence of celiac disease
among Americans.

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Diseases Linked to Celiac Disease

People with celiac disease tend to have other autoimmune diseases. The
connection between celiac disease and these diseases may be genetic.
These diseases include

thyroid disease
systemic lupus erythematosus
type 1 diabetes
liver disease
collagen vascular disease
rheumatoid arthritis
Sjögren’s syndrome
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Dermatitis Herpetiformis

Dermatitis herpetiformis (DH) is a severe, itchy, blistering skin
manifestation of celiac disease. Not all people with celiac disease develop
dermatitis herpetiformis. The rash usually occurs on the elbows, knees,
and buttocks. Unlike other forms of celiac disease, the range of intestinal
abnormalities in DH is highly variable, from minimal to severe. Only about
20 percent of people with DH have intestinal symptoms of celiac disease.

To diagnose DH, the doctor will test the person’s blood for
autoantibodies related to celiac disease and will biopsy the person’s skin.
If the antibody tests are positive and the skin biopsy has the typical
findings of DH, patients do not need to have an intestinal biopsy. Both
the skin disease and the intestinal disease respond to a gluten-free diet
and recur if gluten is added back into diet. In addition, the rash
symptoms can be controlled with medications such as dapsone
(4’,4’diamino-diphenylsuphone). However, dapsone does not treat the
intestinal condition and people with DH should also maintain a gluten-
free diet.

Is weight loss a requirement?

I have had a problem my whole life, if i eat a ton, don't eat a ton etc. I don't loose or gain weight.

Every once in a while my body looses 15lbs or gains 15lbs but it does it on it's own.

With celiac most people loose a ton of weight and unfortunately that is not a sign i have.

Man, there is some sort of gluten in just about everything we eat. This is
really good info. thanks for posting.I agree with Marian. You need to find a new doctor that will run
comprehensive tests to find a diagnoses. These doctors need to know what
their limitations and not let their egos stand in the way of saying....you
know, I just don't know. And refer you out. this is your life and your health.
don't wait around and let a doctor mess with it. your body obviously does
not like the methotrexate so find something that will work. that is not the
only dmard out there and who knows, it may not be a dmard that you need. My advice would be to investigate antibiotic treatment or AP (antibiotic protocol). It can be prescribed by a rheumy or family doc. It is low dose and the types of antibiotics used do not lead to drug resistance. Good sites are www.rheumaticsupport.net or www.roadback.org. Good Luck, I think you already know that Mtx is not the best route for you - keep searching, we have to take control ourselves. All the best, PatWhat about fibromyalgia? Many people with fibro also have chemical sensitivities

Get yourself to another Doctor, i know it means travelling to another town but it will be worth it to have a second opinion.

Take care

I was told i had osteo and RA by one, Lupus and RA by another, Bechets by another and now they don't know what i have lol.

It's like im running into a wall over and over again.