Re: Question about celiac/for

[Guest guest]

> better! No organ damage that we know of, and no broken bones!

Laurie,

What kind of organ damage is possible with celiac disease?

Thanks,

in IL

[Guest guest]

At 09:20 AM 5/24/2001 -0500, you wrote:

> > better! No organ damage that we know of, and no broken bones!

>

>Laurie,

>

>What kind of organ damage is possible with celiac disease?

>

>Thanks,

> in IL

From Canadian Celiac Association

What is Celiac Disease?

Celiac disease, or glutensensitive enteropathy, is a genetically based

permanent intolerance to ingested gluten. It results in an immunologically

mediated inflammatory damage to the mucosa of the small intestine.

Untreated, it can result in severe steatorrhoea and malnutrition, and

increased risk of other diseases including lymphoma and osteoporosis.

Genetics

Celiac disease is a heritable condition, and more than 50% of patients with

celiac disease have a parent, brother, sister or child with undiagnosed

celiac disease. Environmental factors such as severe emotional stress,

pregnancy, surgery, or a severe viral infection sometimes trigger the symptoms.

Incidence

The incidence of celiac disease in a number of European countries is

estimated at 1 in 250, with more women than men being affected. Growing

awareness of celiac disease, better diagnosis, and improved screening point

to the possibility of similar incidence figures in Canada and the United

States.

Symptoms

The symptoms of celiac disease tend to be unspecific, and vary greatly from

one person to another. More than half of the common symptoms in adults,

including anaemia, extreme fatigue, depression, bone or joint pain,

osteoporosis, etc. are often not recognized as gut related. The similarity

of the symptoms of celiac disease with those of other diseases often

results in a misdiagnosis of irritable bowel syndrome, Crohn's disease,

chronic fatigue syndrome, or diverticulosis.

Common symptoms

The following symptoms may occur singly or in combination in children and

adults:

• anaemia deficiency of iron or folic acid (often both

) • mouth ulcers

• extreme weakness and

lethargy • weight loss

• deficiency of vitamins A, D, E, K &

B12 • easy bruising of the skin

• depression •

bone/joint pain

• diarrhea, sometimes constipation (often

both) • edema of ankles and hands

• steatorrhoea (large, pale, foulsmelling

stools) • lactose intolerance

• flatulence, bloating, abdominal

pain • amenorrhea

• nausea and vomiting

Additional symptoms in children

• dental abnormalities • short stature

• severe irritability • delayed puberty

Associated Conditions

Conditions more prevalent in individuals with celiac disease include:

• dermatitis herpetiformis • miscarriages and

infertility

• insulin dependent diabetes • lymphoma

• thyroid disease • attention deficit disorder

(ADD)

• osteoporosis • neural tube defects

in newborns

• neurological damage

Diagnosis

Several studies report a frequent delay of many years between the

appearance of symptoms and diagnosis. The only definitive test for

diagnosing celiac disease is an endoscopy, preferably with multiple

biopsies of the distal duodenum and proximal jejunum, to determine villous

atrophy.

A GLUTENFREE DIET SHOULD NEVER BE STARTED BEFORE A BIOPSY IS DONE, since it

will interfere with making an accurate diagnosis. A variety of blood

screening tests to detect antibodies to connective tissue (endomysium and

reticulin) and to gliadin are available in some Canadian hospitals, to help

determine whether other suspected family members should be biopsied.

Treatment

THE ONLY TREATMENT FOR CELIAC DISEASE IS A STRICT GLUTENFREE DIET FOR LIFE.

Gluten is the general name for the prolamins of wheat, rye, barley, and

oats. Astrict glutenfree diet will enable recovery of the gut, and reduce

the risk of developing other associated diseases. Because of the complexity

of the glutenfree diet, patients should be referred to a professional

dietitian for counselling, and encouraged to join their local chapter of

the Canadian Celiac Association.

----------------------------------------------

Jay Bigam

Marketing and Information Technology Manager

Kinnikinnick Foods Inc.

www.kinnikinnick.com

Toll Free: 1-

[Guest guest]

At 10:11 AM 5/24/2001 -0700, you wrote:

>The thing that doesn't fit is that we're all

>overweight.

Celiacs can be under or overweight so that means little. I'd say you show

very classic symptoms of CD. The other telling " symptom " is that you're

undiagnosed. The average time for diagnosis from the onset of symptoms in

the US is at least 10 years. I'm getting to the point where if I meet

someone who tells me they have something wrong with them and their doctor

can't explain it, I tell them they probably have CD. It has a wide range of

sometimes perplexing symptoms and (as studies are showing) it's far more

prevalent than previously thought. Some organizations are still saying 1 in

2000 have it. Random blood screenings from the U of land are showing

that as many as 1 in 150 of the general population have CD. That's the

GENERAL population. If you are in a high risk group (ie. have relatives

with cd) it's 1 in 12.

Couple of things to note. An IgA test alone wouldn't necessarily show

celiac. You need the anti-endomysial antibody (lgA EMA) and anti-gliadin

antibody (lgA & IgG), and tissue transglutaminase (tTG IgA) tests. These

tests are something like 85-90% accurate, but the only accepted " true "

diagnosis is still the small bowel biopsy.

If you (or your doctor) need help with interpreting the results, I'd

suggest you give Kupper at the Gluten Intolerance Group

( ) a call. I've heard she's very helpful.

Also if you are on a GF diet or even partial GF diet, many of these tests

will show false negatives because you need the antibodies (blood test) or

the damage (biopsy) to confirm diagnosis.

Definitely pursue this. CD can be life threatening if not treated. The good

news it's easy to treat...just be gluten free.

----------------------------------------------

Jay Bigam

Marketing and Information Technology Manager

Kinnikinnick Foods Inc.

www.kinnikinnick.com

Toll Free: 1-

[Guest guest]

You can be over weight and have CD. One thing to look for is the bloated

tummy.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

[Guest guest]

At 12:12 PM 5/24/2001 -0700, you wrote:

>,

>yea sounds like you need further investigation into your symptoms. hope

>your dr listens. a peptide test wouldnt hurt.

It won't hurt, but just remember that a peptide test is not a test for

celiac. You need the antibody tests or biopsy.

>i think we will find this

>leakiy gut phenomenonn to be more common then we thought as well

I think that it's becoming recognized that celiac and ASD are sometimes

(and maybe fairly often) related. CD is also common in people with Type 2

Diabetes, Downs, Schizophrenia, Chronic Fatigue, Chronic Depression and

many other immune related disorders.

There's no basis yet for this I think what will eventually come out is that

all of these disorders are at least peripherally related to some underlying

immune response to gluten. It appears to me at least that some of these

disorders that were once classified as behavioral or unrelated, all have

their beginnings in the immune systems inability to deal with gluten (and

casein for some of these conditions)

----------------------------------------------

Jay Bigam

Marketing and Information Technology Manager

Kinnikinnick Foods Inc.

www.kinnikinnick.com

Toll Free: 1-