Celiac testing - must you eat gluten? Hubby is miserable

[Guest guest]

Hi All,

We are not new to SCD just not active on-list although I read daily.

Our 5 year old began SCD 3/04(after a year GFCF)for autistic issues

with my hubby following him a few months later. My husband has had

lifelong gut problems and although he was seen by doctors food issues

where never explored. He began SCD as trial and has much relief on

it. Now we've come to a new fork in the road. Our 12 year old is more

than likely being diagnosed with Celiac - 2 out of 3 blood tests were

positive and his biopsies were done Friday so we'll know for certain

next week. His issues are recent so he has not been on a restricted

diet. Before starting him we want to know exactly what we are dealing

with. That's the background to my question.....

Hubby is seeing a GI for the first time in late July - a way overdue

but needed visit. Everything we're reading about celiac points to the

fact that testing is only useful when gluten is being eaten and that

those who have restricted their diets need to ingest gluten for 4-6

weeks before testing (the equivalent of 2 to 3 slices of bread a

day). So hubby began on Friday and has been miserable since the

moment the first gluten hit his system. Are we right - is this

neccesary for a proper diagnosis? If so, can we do anything to help

him (and us) through the next month or so without compromising the

testing?

Thanks a bunch!

Jeff (hubby) SCD since mid '04 - undiagnosed gut issues

ph (5) SCD since 3/04 - chromosome syndrome with autistic traits

(12) soon to be SCD - testing for celiac

a (8) no food issues but eats healthy

[Guest guest]

Hi ,

My GI(who's head of the department) said it is unnecessary. He

tested me without having to eat gluten a few years ago.

Sheila, SCD Feb. 2001, UC 23 yrs, PCOD 22yrs

mom of and

<< We are not new to SCD just not active on-list although I read

daily.

> Our 5 year old began SCD 3/04(after a year GFCF)for autistic

issues

> with my hubby following him a few months later. My husband has had

> lifelong gut problems and although he was seen by doctors food

issues

> where never explored. He began SCD as trial and has much relief on

> it. Now we've come to a new fork in the road. Our 12 year old is

more

> than likely being diagnosed with Celiac - 2 out of 3 blood tests

were

> positive and his biopsies were done Friday so we'll know for

certain

> next week. His issues are recent so he has not been on a

restricted

> diet. Before starting him we want to know exactly what we are

dealing

> with. That's the background to my question.....

>

> Hubby is seeing a GI for the first time in late July - a way

overdue

> but needed visit. Everything we're reading about celiac points to

the

> fact that testing is only useful when gluten is being eaten and

that

> those who have restricted their diets need to ingest gluten for 4-

6

> weeks before testing (the equivalent of 2 to 3 slices of bread a

> day). So hubby began on Friday and has been miserable since the

> moment the first gluten hit his system. Are we right - is this

> neccesary for a proper diagnosis? If so, can we do anything to

help

> him (and us) through the next month or so without compromising the

> testing?

>

> Thanks a bunch!

>

>

> Jeff (hubby) SCD since mid '04 - undiagnosed gut issues

> ph (5) SCD since 3/04 - chromosome syndrome with autistic

traits

> (12) soon to be SCD - testing for celiac

> a (8) no food issues but eats healthy

>

[Guest guest]

I wouldn't feed my hubby gluten. Are you saying your hubby has been

scd since 2004 or is that April?

You'd be crazy to torture your husband with gluten if he has been

gluten-free since 2004. It can take a lifetime of damage to get a

biopsy proven celiac diagnoses. It took my hubby that long.

If your husband has been gluten-free for a long time he likely is

healed and it is difficult to tell how long months?/years? he would

have to eat gluten to be damaged enough for a diagnoses.

The testing is only good at diagnosing when you have the end

stage/severe damage from the disease .

I tried for 4 years to get my kids diagnosed with severe stomach/skin

issues...but they weren't damaged enough yet.

After 8 months of gluten-free my husband gut was completely ..they

scoped him, tested him...told him he was better....Ya Right! He

still has so many food issues/problems...He may be starting the scd

soon as gluten-free did not cure his digestive issues.

Celiac does run in families..don't let them tell you different..

My thoughts are with you and your family.

Cathy

Mom (10),(7)..undiagnosed celiac,scd since aug2006

Hubby-celiac 2003,

-- In pecanbread , " hornhaven5 " wrote:

>

> Hi All,

>

> We are not new to SCD just not active on-list although I read

daily.

> Our 5 year old began SCD 3/04(after a year GFCF)for autistic issues

> with my hubby following him a few months later. My husband has had

> lifelong gut problems and although he was seen by doctors food

issues

> where never explored. He began SCD as trial and has much relief on

> it. Now we've come to a new fork in the road. Our 12 year old is

more

> than likely being diagnosed with Celiac - 2 out of 3 blood tests

were

> positive and his biopsies were done Friday so we'll know for

certain

> next week. His issues are recent so he has not been on a restricted

> diet. Before starting him we want to know exactly what we are

dealing

> with. That's the background to my question.....

>

> Hubby is seeing a GI for the first time in late July - a way

overdue

> but needed visit. Everything we're reading about celiac points to

the

> fact that testing is only useful when gluten is being eaten and

that

> those who have restricted their diets need to ingest gluten for 4-6

> weeks before testing (the equivalent of 2 to 3 slices of bread a

> day). the first gluten hit his system. Are we right - is this

> neccesary for a proper diagnosis? If so, can we do anything to help

> him (and us) through the next month or so without compromising the

> testing?

>

> Thanks a bunch!

>

>

> Jeff (hubby) SCD since mid '04 - undiagnosed gut issues

> ph (5) SCD since 3/04 - chromosome syndrome with autistic traits

> (12) soon to be SCD - testing for celiac

> a (8) no food issues but eats healthy

>

[Guest guest]

I am so glad someone asked this question! This has been my question

this week, also! My husband and I becan SCD in April. We have seen

huge improvement in his behavior these weeks. He was scheduled to get

the test done this week, but we will wait a few weeks. I dont think

he has gone through too much healing yet though he feels loads better

(probably just the fact that he is beginning to digest his food

properly). My question is, should we begin him on the goat yogurt in

the next five weeks before his test when we plan on bringing him back

to the beginning with loads of gluten come 1st of August?

We have debated back and forth whether or not we should have it done.

We really dont think he reacts SO strongly to gluten. About 6 weeks

ago, I gave him a loaf of bread that was just pear pure, white flour

and baking soda. He at the whole loaf. He got a few more pimples, got

a grey face, but didnt lose concentration (just some energy). (Sugar

on the other hand totally changes his personality and he loses

ability to communicate well and focus). Still, his sister has celiac

and several in his family have wheat allergies without ever having a

celiac test. He really wants to know if he can ever eat bread and

especially crepes again (Norwegian men are fanatics about bread).

We will also get money every month from the state to support this

expensive diet if he gets a diagnosis. It has been his decision to

try the test although his blood test was negative. Do yall think we

should use the goat yogurt to work on healing now... or just let it

wait until we have finished up the test in a few weeks?

in Norway

April 07

[Guest guest]

Hi there,

Your poor husband. I remember the pain.

If the brush borders (villi) of his intestines have been mowed down by CANDIDA

and bad gut flora....it will not mater if he is gluten free or not. Many

doctors do not realize that the Candida can cause Celiac damage. I just love

Elaine's Celiac Story/chapter~ I could hug her for this one.

http://ccgi.cobbler.plus.com/search.php?q=What+happen+to+the+cure+for+celiac+dis\

ease%3F<http://ccgi.cobbler.plus.com/search.php?q=What+happen+to+the+cure+for+ce\

liac+disease%3F>

This one is a must read:

http://www.breakingtheviciouscycle.info/news/cure_for_coeliac_disease.htm<http:/\

/www.breakingtheviciouscycle.info/news/cure_for_coeliac_disease.htm>

Once you stop eating STARCH and SUGAR his villi will HEAL rather fast. This

will make a typical biopsy negative for a true problem.

So here is my take: EITHER ASSUME that he is celiac...and be grateful that the

labeling and his confirmed diagnosis is not going to raise his insurance

premiums....he will never be able to afford life insurance...or independent

medical again. OR eat the starch and sugar until he is tested and you have

proved that his pain is truly CD. THIS truly matters on if you " need " doctors

confirmation or not.

If one reads the Celiac chapter in Elaine's book and goes to Entero Labs/

Fine M.D. or reads Ron Hoggan and Braley M.D book, or looks into Dr.

Allesio Fassano M.D. research in land...and then read about Loren Cordain

and how the Sadiet (standard American diet) is killing us. They will see that

the prevalence is rather high. AS high as 1 in 4 AMERICANS! It is a hidden

epidemic. I kid you not.

I can't imagine that he does not have this if he has the symptoms. Google and

see what I mean. I say why do expensive testing....why eat foods that keep you

in pain...get on with your healing.

Me and my husband have been biopsy confirmed......I did not put my kids through

this because we would have had to feed them foods that hurt them to prove a

point. I thought this stupid and " condoned " child abuse.

Always remember, that this is much more than gluten for most of us...when the

intestines become damaged, we can not digest starch and sugar....we

ferment....this makes the gut leaky and large undigested proteins like gluten

get through and damage the immune system, causing a IgG and IgA

reaction...making gluten sensitivity that causes health problems.

But don't do what orthodox medicine has done....don't forget the starch feeds

that bad gut bugs....that keeps the intestines sick. I HAVE never seen a GF

celiac recover!~ I belong to the Celiac Sprue Association and would know. So

many people still in pain. Blaming cross-contamination....when it is the darn

gf starch they are eating.

I see them recover with SCD.

This is what I now say....If it is not a horse...and it is not a ZEBRA....it's a

YAK~ Hope this helps you to decide,

Antoinette and family of Five Silly Yaks

(SCD 2/06)

(List of family problems we cam with: IBD, IBS, CD, Malabsorption, Candida, Bad

Gut Flora, Leaky Gut, Food Intolerances, Allergies, Heavy Metals, ADHD,

Autism/PDD, Seizures, Sensory Integration Dysfunction, Mental Illness,

Hyperekplexia and more....a true SCD success story)