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What is Celiac Disease (CD) and Should I Test For It?

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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

a.. Immunoglobulin A (IgA)

b.. anti-tissue transglutaminase (tTGA)

c.. 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.

What is Celiac Disease (CD) and Should I Test For It?

" Celiac disease (also known as Celiac Sprue or gluten-sensitive enteropathy) is

a chronic disease in which malabsorption of nutrients is caused by a

characteristic...lesion of the small intestine mucosa. The lesion is produced,

through unclear mechanisms, by protein constituents of some cereal grains " .

(J.S. Trier, 1993) Traditionally, doctors have suspected CD only when patients

show poor growth, extreme gastrointestinal problems and fatty stools. It is now

known that many patients with a sensitivity to gluten serious enough to damage

the gut wall show no such symptoms!

In patients with CD, the intestinal wall is excessively porous; not only are

nutrients improperly absorbed, but large molecules which should be contained by

the gut wall are not. This could be the way in which improperly digested

peptides pass into the bloodstream and then cross the blood-brain barrier. Thus,

the speculation that CD is present in some autistic children who would benefit

from a gluten free diet is not inconsistent with the opioid excess theory of

Reichelt and Shattock.

Various experts on autism seem to have long ago dismissed the idea that gluten

could be a significant causal factor. However, gluten exists as a " hidden

ingredient " in many foods, medicines and even in the envelope glue we lick. It

is possible that autistic children put on a so-called gluten free diet were

inadvertently ingesting gluten in minute amounts. For those with full blown

Celiac Disease, tiny amounts can be toxic; it is not so far fetched to imagine

that in less severe forms of gluten intolerance, minute amounts could also cause

harm. When full blown CD is diagnosed, it can take more than a month on a

gluten-free diet to see changes; again, it is not far fetched to assume that the

same is true for people with gluten intolerance that have different outward

symptoms. It may be then, that early researchers and parents who tried this

intervention in the past simply gave it up too soon. Patients with full-blown CD

often have terrible symptoms of gastrointestinal distress, fatigue, failure to

grow or gain weight. Therefore, these symptoms are not ignored and the diet is

changed when the child is relatively young. But it is possible that far less

severe forms of CD exist and are, in fact, quite common. If so, these could go

undiagnosed for years. Undiagnosed, the toxic effects of the ingested gluten

could prove extremely damaging and could cause what is likely to be permanent

damage to the central nervous system. According to Reichelt, there are fifteen

opioid sequences in a single molecule of gluten!

According to an article by Dr. Allessio Fasano in a recent newsletter of the

American Celiac Society:

In recent years there has been a noticeable change in the age of onset of

symptoms and the clinical presentation of celiac disease. Because the typical

symptoms of gastrointestinal dysfunction are frequently absent in older

children, the diagnosis beyond the first two years of life is more difficult and

often delayed. These cases are now regarded as having atypical or late onset

forms of celiac disease.

Rimland and Meyer noted as long ago as 1967, that children with the highest

scores on Rimland's E-2 Diagnostic Checklist also showed many gastrointestinal

symptoms. It has also been suggested that CD is an auto-immune disorder with

gluten stimulating increased synthesis of some antibodies in CD patients. Ruth

Sullivan noted that " though few children with celiac disease have autism, it

seems a disproportionate number of autistic children have celiac. Why? Does

malabsorption of the small intestine prohibit vital substances (like

serotonin...) from reaching the brain? If so, why do not all 'classic cases'

have celiac? Or do they? (1975) "

A disorder very closely related to celiac disease, and necessitating the same

dietary intervention, is a skin disease known as dermatitis herpetiformes (DH).

According to the newsletter of the American Celiac Society, " Dermatitis

herpetiformes is the skin manifestation of gluten sensitivity and 70-80% of DH

patients have coexisting damage in the intestine. " In many cases DH sufferers

have no outward signs of intestinal difficulty, and yet at least 70% actually do

suffer from CD! DH appears as a bumpy rash, usually on the arms, legs or

buttocks. It is extremely itchy and may also burn.

My own son had such a rash on his arm and inner thigh. This rash first appeared

at approximately age 2 (around the age his autistic symptoms also appeared) and

was diagnosed by our pediatrician and two dermatologists as severe eczema. All

prescribed cortisone creams but the rash did not improve. It was so itchy that

my son would frequently scratch until he bled. We removed all synthetic fibers,

dressing him in only 100% cotton washed in soap that had no colors or dyes.

Nothing helped.

Then, as mysteriously as it appeared, the rash went away. Around the time that I

changed my son's diet I began giving him evening primrose oil, which was said to

help eczema. I credited the oil and bought several bottles. Then I stopped using

it and the rash did not reappear. I now realize that the cause of the

improvement was probably not the oil, but rather the removal of gluten from

Sam's diet! Though I cannot have the tests run (because he is been off gluten

too long) I am convinced that he was likely showing signs of DH, which were

unrecognized by the doctors who saw it.

New blood tests show latent and sub-clinical cases of CD. Because even latent

celiac disease will cause damage to the intestinal wall, it makes sense to have

these tests run. The relevant tests involve screening the blood for celiac

antibodies. The tests are called endomysial IgA, gliadin IgA and reticulin IgA.

The blood test can rule out or suggest Celiac Disease. If CD is not ruled out it

can only be confirmed via intestinal biopsy. If a gluten free diet has already

been implemented, these tests will not be valid. While these tests will not

reveal a possible sensitivity to casein, they should certainly be done on

children who developed normally for up to two years (and who are thus more

likely sensitive to gluten). Additionally, many autistic children toilet train

late, which delays the possibility of collecting a 24 hour urine sample. Not all

labs are equipped to run these tests. If a local lab cannot do it, you might

want to contact Specialty Laboratories, Inc., in Santa , CA at

310-828-6543

Although no child will willingly donate blood, all four tests can be performed

following a single draw. While it is doubtful that all autistic people will turn

out to have celiac disease, these tests should be performed to rule it out.

Certainly CD causes a leaky gut; if various proteins are being improperly

metabolized, such a gut would provide a pathway into the bloodstream for these

peptides. Clearly these tests should be added to the battery that children

undergo when a diagnosis of autism, PDDNOS or atypical autism is made.

Intestinal Permeability tests also exist, and should be performed, if possible

[see section on the DAN! protocol, below.] This test requires a patient to

ingest a sweet drink provided by the lab performing the test, then eat nothing

for several hours. This is followed by a collection of all urine for the next 24

hours. This test must be ordered by a doctor, and will show whether or not the

patient has a " leaky gut. " If the child is not toilet trained, a bag (obtainable

from your doctor) can be taped used to collect urine at each diaper change.

Sulfur-Transferase Deficiency

Preliminary studies by Rosemary Waring, of the University of Birmingham, UK,

suggests an enzyme deficiency in autistic children [shattock has reported

similar findings in children with ADD and ADHD.] This abnormality effects the

sulfur-transferase system. With insufficient phenol sulfer-transferase (PST),

individuals have an extremely low capacity to oxidize sulfur compounds. Children

with this enzyme deficiency are unable to fully metabolize certain foods and

chemicals that contain phenols and amines. PST is necessary to break down

hormones, some food components and toxic chemicals that we encounter daily. If

the enzyme is deficient, the body cannot detoxify the system--that is, it will

be unable to render these substances harmless.

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