Re: Celiac Question

June 19, 2004

Tina -

The same thing happened to me. I had Zachary on a gluten free diet

for about 4 weeks when I realized he probably had celiac disease. I

got the soonest appointment I could with a gastroenterologist and

they did draw blood which showed elevated IgA and IgG antibodies to

gluten. However, it was too late to do a biopsy which is the only

way to get the celiac diagnosis at this time. I was told I would

have to add gluten back to Zach's diet for 2 months in order to do

the biopsy and get a diagnosis. As desperately as I wanted an answer

at the time, there is no way I would consider this.

The good news is that now that they know that celiac disease is not

rare, there is lots of research going on and one of the things that

they are looking for is other ways to diagnosis celiac disease rather

than an invasive biopsy. I am hoping they will find a way to

diagnose people who have been off gluten for a significant amount of

time.

Good luck.

Zachary 4.9 SCD 9 months

June 19, 2004

" I guess I am wondering if they will be able to

tell if Abraham actually has celiac or not. "

Be prepared that the doctor may ask to give him gluten for a day.

Not sure about this, just something that stuck in my mind.

Marjan

June 19, 2004

> I am really thinking that my son has celiac from all the symptoms and

> things I have been reading, plus the fact that he is extremely gluten

> sensitive and has inflammation in his intestines according to a

> test.

To be honest, it doesn't really matter. If he is gluten sensative or celiac,

the end result is

the same, he needs to be on a GF diet for his WHOLE life. There are blood tests

that can

be done and in fact are considered better than biopsy. Biopsy has a greater

chance of

false negative. Many doctors consider the gluten challenge to be a valid

diagnositc tool.

This involves being on the GF diet for a couple weeks, then having a

gluten-filled day.

Watch for symptoms. This is enough to diagnose gluten intolerance. Celiac

disease is just

gluten intolerance that has been left untreated for an extended length of time

so that

severe damage has been done. I was diagnosed with the gluten challenge back

before the

blood tests were done. Neither my doctor or I felt the need for any further

invasive

testing. My son was diagnosed with blood tests at 14 months.

Andre and Liam

June 19, 2004

I just now finished Elaines book - am I confused, or can this diet actually cure

celiac? She states that there is much debate as to whether or not gluten

allergy is a cause or a symptoms of celiac. So, based on patients who followed

the diet strictly for a year, most had complete reversal of symptoms and were

able to slowly go back to a normal diet, since the gut was healed and the

bacteria returned to a healthy state. Am I missing something? Isn't this the

point of doing the diet for celiacs?

Robbie

Re: Celiac Question

> I am really thinking that my son has celiac from all the symptoms and

> things I have been reading, plus the fact that he is extremely gluten

> sensitive and has inflammation in his intestines according to a

> test.

To be honest, it doesn't really matter. If he is gluten sensative or celiac,

the end result is

the same, he needs to be on a GF diet for his WHOLE life. There are blood

tests that can

be done and in fact are considered better than biopsy. Biopsy has a greater

chance of

false negative. Many doctors consider the gluten challenge to be a valid

diagnositc tool.

This involves being on the GF diet for a couple weeks, then having a

gluten-filled day.

Watch for symptoms. This is enough to diagnose gluten intolerance. Celiac

disease is just

gluten intolerance that has been left untreated for an extended length of time

so that

severe damage has been done. I was diagnosed with the gluten challenge back

before the

blood tests were done. Neither my doctor or I felt the need for any further

invasive

testing. My son was diagnosed with blood tests at 14 months.

Andre and Liam

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

June 20, 2004

I for one don't care about taking back foods or being cured, just controlling my

celiac and being functional. Before SCD everything I ate gave me pain. After

three years I have taken the very occasional piece of conventional cheesecake

without consequence but it seems too sweet. I had a needed and large weight loss

prior to starting SCD and I maintain a normal weight effortlessly with SCD. it

rends to be self regulating. i still do have flares but they subside.To me this

is like diabetes in a way. i can live with it and cope with it but could not

before SCD.

Carol F.

This is great info. I have been in touch with a gal a couple of times that has

a little baby dianosed with celiac. It was heartbreaking to talk with her -

he's improved a lot GF but still has problems. I wanted to communiate the SCD

diet to her, but I definitely don't want to give her erronious info. Thank you

all for the input!

Robbie

July 15, 2004

Hi Helen,

Elaine believes that the tests for celiac are not reliable. Here is

her article about celiac:

http://www.scdiet.org/7archives/scdceli1.html

How about trying SCD for a month instead of testing?

Mimi

>My question is how

> will the doctor test for DH, Celiac, even asymptomatic?

July 15, 2004

Mimi,

Thanks for the article. The problem is that my youngest only shows

signs of rash on the back of his leg - no other discomfort that I

know of. My daughter is feeling fine so I don't know if there is

internal damage going on or not. Pretty much we have a healthy diet,

probably more dairy for them than necessary, but much less than

before and surely less than the average population. I hate to make

so many foods completely off bounds to them if they can in fact

digest it and I can't see how one month SCD will really show me

anything different, since I don't see much now. Does that make

sence? I scanned the article and I will read it more thouroughly

tonight.

Thanks

Helen, mom to three

> Hi Helen,

>

> Elaine believes that the tests for celiac are not reliable. Here is

> her article about celiac:

> http://www.scdiet.org/7archives/scdceli1.html

>

> How about trying SCD for a month instead of testing?

>

> Mimi

>

> >My question is how

> > will the doctor test for DH, Celiac, even asymptomatic?

July 16, 2004

Helen,

I am not really sure what tests would be helpful. Maybe other list

members might know.

The Great Smokies Comprehensive Stool Analysis Test does measure

malabsorption. I wonder what is the best test for carbohydrate

malabsorption? It would be great if this list would have the answer to

this question. Maybe patients of Dr Buie could give us the answer

since Dr Buie tests for that.

Mimi

> Mimi,

> Thanks for the article. The problem is that my youngest only shows

> signs of rash on the back of his leg - no other discomfort that I

> know of. My daughter is feeling fine so I don't know if there is

> internal damage going on or not. Pretty much we have a healthy diet,

> probably more dairy for them than necessary, but much less than

> before and surely less than the average population. I hate to make

> so many foods completely off bounds to them if they can in fact

> digest it and I can't see how one month SCD will really show me

> anything different, since I don't see much now. Does that make

> sence? I scanned the article and I will read it more thouroughly

> tonight.

> Thanks

> Helen, mom to three

>

July 16, 2004

Excema is a sure sign of allergy. If, indeed, he is gluten sensitive, scd would

get rid of that rash really quickly. I've been dealing with those patchy excema

rashes for a long time and they don't last long after the offending food is

gone.

You might see other profound things after going on the diet that you might not

even see as a problem - I have a strange thing with my younger son - he is not

autistic but he is not verbal at all. 2wks into the diet and he's all of a

sudden interested in language, he's trying to learn words and is using sign

language to communicate. This may be a huge coincidence, but I still wonder.

So I don't know - it is hard, but just to see my kids loving fruits and veggies

and wanting to snack on them (my older son asked for green beans for breakfast -

go figure) is just thrilling in and of itself.

Standard medical tests for celiac include a blood test to look for antibodies

and a biopsy. My youger son has obvious signs of gluten intolerance so I've

opted to just put him on the diet and not have him subject to the procedure.

Later on I may try and get the confirmed dx, but he's only 15 mos old and since

my older son is on scd, it's just easy for me to put him on, too.

Robbie

scd 4wks

Re: celiac question