Re: Gluten Rechallenge - Jay

[Guest guest]

I would like to hear from a knowledgeable person like JAY BIGAM

(hint,hint) on this.

As I understand it, gluten intolerance is very different than celiac.

Two different mechanisms. The gluten opiate reaction produces the

effect of smaller amounts of gluten producing the same effect as

larger amounts did previously (so this would be correct). With

sustained exposure to gluten, the body adjusts and can take a " bigger

fix " to produce the same reaction. [as an aside, enzymes can be

effective in this case]

Celiac involves the villi in the small intestine being damaged. So

taking away gluten allows the intestines to heal and so a small

amount of gluten does not produce the same effect as a large amount

(also correct). In celiac, a sustained exposure to gluten re-damages

the intenstines once again. [enzymes will most likely not be

effective in this case]

So, Jay, how close did I get it?

.

[Guest guest]

At 06:31 PM 7/25/2001 +0000, you wrote:

>I would like to hear from a knowledgeable person like JAY BIGAM

>(hint,hint) on this.

>

>As I understand it, gluten intolerance is very different than celiac.

>Two different mechanisms. The gluten opiate reaction produces the

>effect of smaller amounts of gluten producing the same effect as

>larger amounts did previously (so this would be correct). With

>sustained exposure to gluten, the body adjusts and can take a " bigger

>fix " to produce the same reaction. [as an aside, enzymes can be

>effective in this case]

>

>Celiac involves the villi in the small intestine being damaged. So

>taking away gluten allows the intestines to heal and so a small

>amount of gluten does not produce the same effect as a large amount

>(also correct). In celiac, a sustained exposure to gluten re-damages

>the intenstines once again. [enzymes will most likely not be

>effective in this case]

>

>So, Jay, how close did I get it?

>.

Well...pretty close. The way I see it, (and remember I might be

knowledgeable, but I'm not a doc or biochemist...)

The only things I would clarify are:

- using the term " gluten intolerance " as this is often used to describe

celiac as well. I'm guessing you are meaning gluten intolerance as it

relates to ASD.

- the amount of gluten which can cause damage. There is a significant

debate in the celiac community over what is the " acceptable' level of

gluten. Some believe that the amount is zero (or as close to it as is

theoretically possible). Some (mostly European) say that small amounts of

gluten do not seem to do damage. There is little research on this but it is

why you see many of products available from Europe containing wheat

starch...something which is NOT recommended by any North America Celiac

Association. (and several in Europe).

Gluten can be a problem in 3 different and distinct ways.

1. Autoimmune response. as found in Celiac..which as you've said, damages

the villi.

2. Peptide/opiate problem as found in ASD

3. Allergy. Histamine response similar to any other allergy.

The thing to remember with celiac is that gluten starts an autoimmune

reaction which damages the villi. The gluten itself does not do the damage,

it is antibodies produced by ones own body that is actually attacking the

intestine. Gluten (for, as yet, unknown reasons) acts as the trigger. It is

the belief of many that even small amounts can trigger this response. The

key idea being that some threshold amount (which is still under debate)

will trigger this response. Once the response is triggered, additional

quantities of gluten may not be relevant, except in perhaps the time it

remains in the body.

Do reactions seem to be worse after a long period of being GF? I believe

for many people they are..or at least the symptoms are. The damage to the

villi are taking place, regardless of symptoms. It's important to remember

that there are twice as many celiacs with no symptoms as there are with

symptoms (www.celiaccenter.org). For those WITH symptoms, it does seem that

slip ups cause severe reactions. I'm not sure if this is a perception, or

if it is actually occurring. Many undiagnosed celiacs have chronic

symptoms, which are often not very severe. My personal experience is that I

had low grade, but constant symptoms for pretty much as long as I can

remember. Nothing that I could really pin down to one thing. Then I had a

viral respiratory infection about 5 years ago which seemed to kick start my

immune system and made my symptoms much more acute. I believe that the

during the chronic phase of my celiac, my body was not producing enough

antibodies to cause a violent reaction (but enough to do damage). The

Immune response to the virus also somehow triggered increased response to

gluten. Now anytime I am exposed to gluten, the full force of the increased

immune response is released. I also think that for some, the response

mechanism gets desensitized in the constant presence of gluten. When gluten

is removed, the immune response has a chance to " recover " and forms a much

more intense response in the presence of small amounts of the " foreign

invader " gluten. This may explain why many celiacs can become extremely ill

from even small amounts of gluten such as that from cross contamination.

(myself included). I have problems with many " gluten free'' products that

are baked in non dedicated facilities. The interesting thing is that my

reaction to small amounts (like the one bacon wrapped scallop at New Years

that was cooked on the same tray as samosas), doesn't seem to be " less

worse " than when I really blow it and get a large dose (like the package

sunflower seeds I ate on my last road trip that had wheat starch, barley

flour and modified food starch)

About reintroducing gluten....

The real question is " is it going to cause more harm than good. " Weighing

the age, response to the diet, medical and family history and your child's

personality are things only you can do. If you and your child can maintain

a lifelong gluten free diet, then an " actual " diagnosis is may not be

necessary as the treatment for a diagnosed celiac is...well..a lifelong

gluten free diet... The choice should always be to get diagnosed first and

then go GF...but if you've already taking the step, you have to make some

decisions.

Is there a history of celiac in the family? Note that you should also be

looking for relatives with IBS, chronic fatigue, intestinal lymphoma,

anemia, osteoporosis, depression and infertility. These are all often

symptoms of Celiac. If so, I'd seriously consider getting a proper

diagnosis. Celiac can be fatal if untreated. Of course if you choose to

remain GF for LIFE than that's all the treatment that is required. It's

important to remember that it's human nature for people to " cheat "

especially if they can say to themselves... " well I can have just

one..because I really don't know for sure.... " This is actually pretty

common in a lot of self diagnosed celiacs. There are other implications

(such as insurance, hospital stays etc) for which a positive biopsy

diagnosis is a requirement. I also believe that some states allow tax

exemptions for celiacs...but only diagnosed ones.

The reintroduction of gluten is necessary for an accurate blood screening

result as it looks in the blood for the antibodies which do the damage to

the villi. It is also necessary for a positive result on a biopsy as damage

must be present for diagnosis. An accurate biopsy can only be done after a

significant amount of time back on gluten, especially if off gluten for

long enough that the damage to the villi heals. One must " re-damage "

oneself in order for the test to be positive. If someone is GF for a short

period of time (a week?), the repair of damage would have only just begun

and it would likely be possible to go back on gluten only for a short

period of time. If the damage has been repaired, a reintroduction of

between 6 weeks and 6 months may be recommended.

=================================

From the celiac listserv archives

" Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director,

Peds GI & Nutrition Laboratory; University of land at Baltimore: The

result of serological tests depends on the diet. Generally, three to six

months of a gluten-free diet may result in normal antibody levels in a new

patient. A strict gluten-free diet for more than three months may result in

inconclusive serological tests in patients, who have started a diet without

any diagnostic test. In this case a gluten challenge should be introduced

for a proper diagnosis.Each patient has different sensitivity to gluten for

reasons that are unclear. The period of gluten challenge and the amount of

gluten necessary to provoke serological immune response are individually

different.A 0.3 g/kg body weight/day of single gluten challenge causes

immunological changes (cellular immunity) in the intestine (J Pediatr

Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet,

however, the serological response is much slower.Our recommendation is to

ingest at least 0.3 g/kg/day of gluten for two months prior to the

serological tests. However, if somebody experiences symptoms during the

gluten challenge we recommend to perform serological tests earlier.The

protein content of wheat flour is between 7-15% and approximately 90% of

the protein content is gluten. That means a slice of bread may have 2-3 g

of gluten. "

================================

Either way, the recommended route to celiac diagnosis is to do it BEFORE

going on a GF diet. I am not as sure about the reliability of the peptide

testing for ASD as this is not my area of expertise. I do understand from

what I've read that the peptide/opiates produced by gluten do remain in the

blood stream for a considerable amount of time (up to one year?) so these

tests may be somewhat more accurate even after the elimination of gluten

from the diet (those with more knowledge correct me if incorrect please)

[Guest guest]

Thank you, Jay.

Now I know why celiac is called an autoimmune condition. And will be

careful when using the term " gluten intolerance. " Since we have

become avid label readers, this clears up why my husband sees things

marked " gluten free " containing items off limit here when he travels

to Europe.

.