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Soshannah-

There are many reasons why your son may have had a lower count in his

fecal sample. The stomach lining completely regenerates every three

days, and it's possible that just didn't have any gluten in him.

Perhaps the test was inaccurate, or flawed. In any case your son should

be put on the diet. It may prove to be temporary until you can get more

substantial results, but you should tell your husband some of the

consequences of a celiac eating gluten on a regular basis. I am sure he

cares about your son's health!

I hope it turns out okay.

Leah

On Aug 28, 2005, at 10:21 PM, EDUCATIONmatters wrote:

 

> Hi All, 

>

> I feel kind of desperate right now.  I just got my lab test and my 

> son's lab

> tests back from Enterolab in Dallas, Texas.  They analyzed both  our

> stool

> samples and told us that we both have celiacs.  I am not worried 

> about myself

> because my symptoms have already been alleviated by following a 

> gluten free

> diet.  My husband will not accept that my son has celiacs until  it

> is confirmed

> by a pediatrician or a pediatric gastroenterologist.  He  will not go

> along

> with my son following a gluten free diet and it won't work  unless my

> husband

> cooperates.  Although he will go along with it once the  diagnosis is

> confirmed.

>

> What I need to know from you all or from anyone is this.  Is

> Enterolab  or

> " the stool specimen test " valid.  They look for the antibodies in

> the  stools. 

> My son's antigliadin antibody in the stool was 18 and normal is 

> under 10.  My

> son's Fecal Antitissue Transglutaminase IgA   was  18 Units, and

> normal range

> is under 10.  My son's  Microscopic Fecal Fat Score was   829 Units

> and

> normal range is under  300. 

>

> Does anyone know anything about these numbers regarding fecal

> tests.   Will

> another doctor use these numbers and do further investigation.  Or 

> will they

> tell me that it is not mainstream medicine.  My husband spoke  with

> my uncle,

> who is a doctor, tonight.  My uncle said it sounds like  alternative

> medicine

> and may not mean anything.  Is testing the stools for  celiacs

> considered

> alternative medicine.

>

> Thanks everyone,

>

> Shoshannah

>

>

>

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Shoshanna

 

Have a seat chavera. Take a deep breath and relax a sec.

 

You may not like the answer to your question, but it's going to show you exactly

what you are up against.

 

First, if you can find a DAN trained doctor where you live, the stool sample

results will be treated with respect - if you take them to a traditional

alleopathic pracitioner (ie pedaetrician) you will be told it is unreliable and

unproven and the only acceptable proof that a person has Celiac's Disease is a

positive biopsy of the intestinal tract. Elaine Gottschall's book (Breaking the

Vicious Cycle) and it's chapters on CD might help you to better understand why

the biopsy is not reliable medicine and should not be the gold standard for

diagnosing CD anymore.

 

I am suspecting that uncle is about 40 or 50 and traditionally trained. He

would be used to relying on blood tests (which are relatively new for

alleopathic practitioners) and on the biopsy that is gold standard at this time.

 

However in the hundred or so years that Celiac's Disease has been well known and

studied, it has gone from being considered a detrimental intolerance of all

grain proteins to one restricted to an autoimmune reaction to just the gluten

from wheat, rye, barley, spelt, and related hybrid grains.

 

That said, Shoshanna, you won't convince your husband even if you had a positive

biopsy because right now that means admiting his child is less than perfect. I

think you might really just need to give him a little period of mourning and go

on about your life with your son as if he had just been diagnosed with diabetes

or another life long condition. Your husband will catch up with you when he

sees improvements in health in both you and your son. Not to discredit the men,

but very often it is the mothers who suspect something amiss, get diagnoses and

treatment with a sensible and logical course of action. Many men take time to

come along aside and to understand health issues like this. Since you were also

positive this child and any others have about a 50% chance of also being gluten

intolerant so that's simple genetics.

 

I suggest also that you look for a DAN doctor (stands for Defeat Autism Now),

one who is trained in recognizing the affects of food on the body, and who is

not necessarily choosing to restrict his practise to autistic spectrum

disorders, because if you can find one you will generally be treated with

respect and understood in the testing you have chosen to pursue. A doctor

trained in clinical ecology will also be helpful.

 

But, this is what you are up against in traditional medicine .... if it ain't

proven in a biopsy you don't have CD.

 

Elaine Gottschall has a website, at http://breakingtheviciouscycle.info/

 

She uses a diet which avoids most grains instead of just gluten, but I am more

interested in the information she has which may be of help to you. Check with

your local library to see if they have or can get the book.

 

Peace be to you Shoshanna, it's not an easy walk just now. You will be on a

steep learning curve and your husband may not be able to go along with you just

yet, but give him time and he will.

 

BL

 

 

My uncle said it sounds like alternative medicine

and may not mean anything. Is testing the stools for celiacs considered

alternative medicine.

 

 

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Personally I agree with Leah's advice, but if your husband is serious about

pursuing testing and treatment through more traditional medical means, taking

your son of gluten will guarantee negative results. As a mother I hate to see a

child sick or ill or dysfuctional because of food, but taking him off gluten may

not produce enough results to satisfy your husband's need for " proof "

 

Just a thought,

 

BL

 

 

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Hi Shoshannah,

I'm in almost the same boat. I just had the same tests done for my

son by Enterolab and got the same results. I'm having a hard time

convincing anybody that it's true, because it has not been confirmed

by the pediatrician. My plan is to print out the test results, along

with the scientific rationale from the Enterolab website, and take it

my son's pediatrician. Since my son has been on a GF diet now for

several months, I am also going to take my notes about the

improvements we've seen in sleep, bowel movements, etc on the diet.

I hope she will be open-minded enough to at least humor us, because

we will need her to put the GF diet in his chart for his preschool.

If she won't entertain the idea, I will probably be looking for

another doctor.

Maybe your husband would compromise with you, and give the diet a

trial period? We saw positive results for our son within a couple of

weeks. Maybe once your husband saw some improvement he would support

you.

Good luck, and keep us posted.

Lori

 

 

>

> Does anyone know anything about these numbers regarding fecal

tests. Will

> another doctor use these numbers and do further investigation. Or

will they

> tell me that it is not mainstream medicine. My husband spoke with

my uncle,

> who is a doctor, tonight. My uncle said it sounds like

alternative medicine

> and may not mean anything. Is testing the stools for celiacs

considered

> alternative medicine.

>

> Thanks everyone,

>

> Shoshannah

>

>

>

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Dear Shoshannah-

 

My son was diagnosed 8 years ago, my husband in November 04. I have never heard

of this kind of testing. I have no idea if it is accurate or not. I am so

sorry.

 

Amy L

-

EDUCATIONmatters

nogluten ; glutenfreefriends ;

 

Cc: emailciara

Sunday, August 28, 2005 7:21 PM

lab tests for celiacs

 

 

Hi All,

 

I feel kind of desperate right now. I just got my lab test and my son's lab

tests back from Enterolab in Dallas, Texas. They analyzed both our stool

samples and told us that we both have celiacs. I am not worried about myself

because my symptoms have already been alleviated by following a gluten free

diet. My husband will not accept that my son has celiacs until it is

confirmed

by a pediatrician or a pediatric gastroenterologist. He will not go along

with my son following a gluten free diet and it won't work unless my husband

cooperates. Although he will go along with it once the diagnosis is

confirmed.

 

What I need to know from you all or from anyone is this. Is Enterolab or

" the stool specimen test " valid. They look for the antibodies in the stools.

My son's antigliadin antibody in the stool was 18 and normal is under 10. My

son's Fecal Antitissue Transglutaminase IgA was 18 Units, and normal range

is under 10. My son's Microscopic Fecal Fat Score was 829 Units and

normal range is under 300.

 

Does anyone know anything about these numbers regarding fecal tests. Will

another doctor use these numbers and do further investigation. Or will they

tell me that it is not mainstream medicine. My husband spoke with my uncle,

who is a doctor, tonight. My uncle said it sounds like alternative medicine

and may not mean anything. Is testing the stools for celiacs considered

alternative medicine.

 

Thanks everyone,

 

Shoshannah

 

 

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Although Enterolab can test for antibodies - there are no standards for

their tests and any further diagnosis (although gluten intolerance seems

reasonable, if you are making antibodies to it). They do not claim to

diagnose celiac disease (as this requires a biopsy and the only accepted

tests are blood tests). The blood test is simple, have your PCP or

pediatrician run the test (but don't stop eating gluten until you get this

done. If positive, you'll need a biopsy (and have to stay on gluten until

that is finished).

 

The testing you had done is not " alternative medicine " so much as it is a

lab test that is ownly recognized by the docotr who invented it (and who

runs Enterolab).

 

>

>

>

> Does anyone know anything about these numbers regarding fecal

> tests. Will

> another doctor use these numbers and do further investigation.

> Or will they

> tell me that it is not mainstream medicine. My husband spoke

> with my uncle,

> who is a doctor, tonight. My uncle said it sounds like

> alternative medicine

> and may not mean anything. Is testing the stools for celiacs considered

> alternative medicine.

 

---

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I think this is subjective. The only real benefit of having the blood test or

the biopsy is to prove to the medical community that you would be better off

without gluten in your life. Since Shoshana was trying to get her husband to

agree it makes sense to follow through with these tests, but for the average

person who gets sick on gluten, staying on it to endure a biopsy which may or

may not prove you meet the gold standard of diagnosis serves little purpose when

the treatment is to remove all gluten from your diet anyway.

 

My PCP, who happens to be trainined in environmental medicine told us try the

diet and if we felt better that was proof enough of a gluten intolerance

regardless of whether it was CD or not. He said it's like going to the doctor

and saying it hurts when I do this, and having the wise old country doctor say

" well, don't do that "

 

Just my 2 cents though,

 

BL

The blood test is simple, have your PCP or

pediatrician run the test (but don't stop eating gluten until you get this

done. If positive, you'll need a biopsy (and have to stay on gluten until

that is finished).

 

 

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