Celiac disease

[Guest guest]

Hi Karin,

Thank you for that valuable information.

Marcia

Mom to Sara (DS) and 5 and Lucas 9

[Guest guest]

Karin,

I need some info on Celiac Diesase, do you know of any web sites or

resources.

My sister just called me 3 days ago, they just found out that both of

her kids has this diease, and she's in really stressing out. She lives

in a small town in Washington and is having a hard time with resources.

I don't know much about this diease, but she did say they will also be

testing them for cystic fibrosis which has the same symtoms.

So, please share your personal experience with me, I really need to help

her.

Thanks

Ginene

Tyre 9, Tyrey 4(DS) & Tyren 4

[Guest guest]

Hi, I just look up some info on Celiac ..you can go to

www.celiac.com

also Dr,Leshin has some info on his sites.. at

http://www.ds-health.com and go to Celiac disease.

Hope this helps

Re: Celiac Disease

>From: EYN@... (GINENE Mills)

>

>Karin,

>

>I need some info on Celiac Diesase, do you know of any web sites or

>resources.

>

>My sister just called me 3 days ago, they just found out that both of

>her kids has this diease, and she's in really stressing out. She lives

>in a small town in Washington and is having a hard time with resources.

>

>I don't know much about this diease, but she did say they will also be

>testing them for cystic fibrosis which has the same symtoms.

>

>So, please share your personal experience with me, I really need to help

>her.

>

>Thanks

>Ginene

>Tyre 9, Tyrey 4(DS) & Tyren 4

>

>

>

>

>

>---------------------------

[Guest guest]

Hi All

I know a few children in our speech language group have Celiac disease and

the improvement after their diet was changed was dramatic.

We also supply gruten free products to some of our customers in our Bakery

and I found this great website for supplies of gluten free, wheat free, etc

products - might be worth a look:

www.glutenfreemall.com

Carolyn

Mum To on, , Emma (3 3/4)ds and Nicki (2 1/2)ds

[Guest guest]

GINENE Mills wrote:

>

> From: EYN@... (GINENE Mills)

>

> Karin,

>

> I need some info on Celiac Diesase, do you know of any web sites or

> resources.

>

Yes, Karin go to Dr. Len Leshin's web site

http://www.ds-health.com

he explains alot there.......good luck!

Gail

> My sister just called me 3 days ago, they just found out that both of

> her kids has this diease, and she's in really stressing out. She lives

> in a small town in Washington and is having a hard time with resources.

>

> I don't know much about this diease, but she did say they will also be

> testing them for cystic fibrosis which has the same symtoms.

>

> So, please share your personal experience with me, I really need to help

> her.

>

> Thanks

> Ginene

> Tyre 9, Tyrey 4(DS) & Tyren 4

>

> ---------------------------

[Guest guest]

thanx for that info! do all Dr's know how to test if i

mention it to them? My son has had runs for a week

now...i hope its not this! Man it stinks! but i dont

think it floated??? He is off milk for now...what is

gluten? bread products? what cant they eat? does ur

son get used to eating the food he needs to eat? Thanx

again...

--- Aasknc@... wrote:

> HI guys,

>

> My 11 yr old son, (DS), has Celiac disease.

> He was diagnosed at age

> 6 after being sick for years with no diagnosis. He

> only weighed 25 pounds

> and was really small. Usually (but certainly not

> always) kids with Celiac

> are thin, have big bloated tummies, a smooth tongue,

> sores around the mouth,

> like in the corners, have pale greasy stools that

> dont really smell like

> normal bm but have a really putrid, rotten smell

> (and it floats). They tend

> to be irritable too. One thing about them though,

> they have a HUGE appetite,

> want to eat alot and often. The reason for this is

> because they are not

> absorbing the food, it is passing right through

> them leaving them just

> starving. Literally, they are malnourished even

> though they eat a ton.

>

> This feeding clinic sounds like a horror to me, what

> better way to totally

> turn your child off to food??? Force them to sit

> there???? That sure goes

> against everything we have ever been taught about

> kids and food, and obesity

> too!! Remember you aren't supposed to make them eat

> if they dont want to,

> not supposed to make them clean their plate. I

> struggle with 's (DS,

> 13) weight enough as it is, I can't imagine what

> forcing her to eat when

> small would have done for her now!

>

> Celiac disease is definitely related to DS, they

> have just become aware of

> this over the last few years.... was the

> first child diagnosed at

> Duke in ten years and now over the past five years

> sooooo many kids with DS

> have been diagnosed there. They have known about

> the relationship between CD

> and DS in Europe for a very long time and routinely

> tested all kids with DS

> for it. It is just finally recognized here, and

> dont let anyone fool you,

> it's not rare, it's just very under diagnosed! ALL

> kids with DS are supposed

> to be screened for it now, beginning at age two. If

> your child has not been

> eating gluten containing food it will come up

> negative though so you need ot

> wair until your baby eats different foods before

> testing. IF negative they

> need the testing repeated a few years later. If

> posiitve they usually retest

> evey year to be sure there are no antibodies which

> would mean the diet isn't

> completely gluten free.

>

> The gluten free diet is the pits. It's hard and I

> hate it. If I had CD I

> would be sick all the time, I couldn't stick to the

> diet.

>

> Get your kids tested!!!!

>

> Karin

>

=====

mom to Katy (10) and Denton (5)

both DS.

__________________________________________________

[Guest guest]

> . Autism and CD....would

> Loriann care to comment on her findings, since wasn't she the one who said

> since she put her kid on the gluten free diet, that he has shown no more

> autistic tendencies??

Hi, Everyone.............I did not mean for this to be a topic of

discussion. It was told me and I was surprised of her statement. I agree

with Joan.......if the parents see improvement on dietary changes, then who

is anyone to question them? I don't want this to be argued........I think it

is like a lot of other theories. What works for one child doesn't work for

the next....be it meds, diet, ABA, vitamins, etc. Take care, Everyone.

Margaret

>

>

[Guest guest]

In a message dated 4/4/01 12:59:13 PM Eastern Daylight Time,

jmedlen@... writes:

<< I don't like to comment for LoriAnn. I think she's moving! But I want to

point out that (and his little brother) have tested positive for

Celiac disease... >>

Joan,

Just to confuse YOU a little bit....LOL....Didn't Loriann say that there

was some disagreement among the docs about the biopsy? I thought I recall

her saying that she'd keep on a regular diet until they finished

moving, and then they were planning on a re-biopsy. And I don't recall

getting a biopsy. Anyone remember if he did? Anywhoos!! I'm sure

she'll be back on soon enough to clarify all this for us. And I'm totally

confused on the autism dx with . I don't *think* it was taken away YET.

Donna

[Guest guest]

In a message dated 4/4/01 1:52:21 PM Eastern Daylight Time, duffey48@...

writes:

<< Joan,

Just to confuse YOU a little bit....LOL....Didn't Loriann say that there

was some disagreement among the docs about the biopsy? I thought I recall

her saying that she'd keep on a regular diet until they finished

moving, and then they were planning on a re-biopsy. And I don't recall

getting a biopsy. Anyone remember if he did? Anywhoos!! I'm sure

she'll be back on soon enough to clarify all this for us. And I'm totally

confused on the autism dx with . I don't *think* it was taken away

YET.

Donna >>

Well, ya both confused me!!!!!!!! LOL I thought never had an autism

dx or a CD dx, but had a different one. LOL See how well I retain

information? LOL

Gail

[Guest guest]

At 11:53 AM 4/4/01 EDT, you wrote:

>

>> . Autism and CD....would

>> Loriann care to comment on her findings, since wasn't she the one who said

>> since she put her kid on the gluten free diet, that he has shown no more

>> autistic tendencies??

I don't like to comment for LoriAnn. I think she's moving! But I want to

point out that (and his little brother) have tested positive for

Celiac disease...that was why she took him off the diet so they could have

an accurate Celiac Dx. Therefore, the Gluten Free diet is essential for

's health--and when he's not feeling good, I would expect behavior.

That doesn't necessarily take away the autism dx (but I can't remember if

he actually ahs one?). It is possible to have celiac and autism. Their

incidence is unrelated. However children with DS have a higher incidence of

Celiac.

Just to confuse you a bit.

j

[Guest guest]

At 01:49 PM 4/4/01 EDT, you wrote:

>Joan,

> Just to confuse YOU a little bit....LOL....Didn't Loriann say that there

>was some disagreement among the docs about the biopsy?

Yeah...I can't keep it straight. I know it was **awful** that's what I know

for sure to have all those changes going on. Yep...that was it.

It's all so confusing.

j

[Guest guest]

Yes Joan, and for those of us with kids with ds/autism/ and CD the diet does

help in differing areas as with any child. JJ's behavior did improve with

the diet but he is still autistic. Health is better. Now , not

autistic but ADHD, has had no change with behavior since starting the diet.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: Joan <jmedlen@...>

>

>Subject: Re: Re: Celiac Disease

>Date: Wed, Apr 4, 2001, 8:52 AM

>

>At 11:53 AM 4/4/01 EDT, you wrote:

>>

>>> . Autism and CD....would

>>> Loriann care to comment on her findings, since wasn't she the one who said

>>> since she put her kid on the gluten free diet, that he has shown no more

>>> autistic tendencies??

>

>I don't like to comment for LoriAnn. I think she's moving! But I want to

>point out that (and his little brother) have tested positive for

>Celiac disease...that was why she took him off the diet so they could have

>an accurate Celiac Dx. Therefore, the Gluten Free diet is essential for

>'s health--and when he's not feeling good, I would expect behavior.

>

>That doesn't necessarily take away the autism dx (but I can't remember if

>he actually ahs one?). It is possible to have celiac and autism. Their

>incidence is unrelated. However children with DS have a higher incidence of

>Celiac.

>

>Just to confuse you a bit.

>

>j

>

>

> Checkout our homepage for files, bookmarks, and photos of our

>kids. Share favorite bookmarks, ideas, and other information by including

>them. Don't forget, messages are a permanent record of the archives for our

list.

>

>

[Guest guest]

, there might be some info at gluten-free.org???

At 12:15 AM 6/17/01 -0400, you wrote:

>Can you resend the web site for celiac disease and seizures?

>

>Thank you

>

>

>_

>

>

[Guest guest]

Hi,

Last October we found out that tested positive for celiac, which both

the doctor and dietician said was common in people who have Down syndrome.

We have gradually taken away the culprit foods which aggravate it and it

hasn't been easy since the grain/cereal/bread group has always been his

favorites. He is doing very well and has had not had any bouts of diahhrea

in almost ten months (some people with celiac experience chronic diarrhea

while others experience chronic constipation and a few show little if any

symptoms). One thing that has happened--he has put on weight. He has

gained almost 12 pounds since Christmas. A doctor in June said this is

probably due to reaction to the new food she is eating. Many special foods

are also available for people with allergy to wheat/gluten. He does not

have diabetes among his litany of ailments. We hope that does as

good as has done.

Dad to , Kristi, (all three Ds) and (Cri du chat)

Husband to C.

Celiac Disease

> Hi,

> We just found out that tested positive for celiac disease. Which

> means that she has a possible allergy to wheat/gluten. She needs to have

an

> endoscopy by a pediatric GI. Her endocrinologist suggested the test

because

> he said it is common in children with type 1 diabetes.

>

> I also discovered that it is common in people with DS - does anyone have

any

> exprience with this and know that it is something that maybe should have

been

> checked for in the past - especially since amanda has never eaten bread

> products in her life - not pizza, or a bagel or italian bread ever.

Imagine

> living in NY and not eating that stuff! LOL

>

> Really, if anyone has or is familiar with this, please email me. I

already

> started researching it myself!

>

> ~ Mom to 11 DS and Diabetes Type 1 and 8 NY

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

I may be just having a crossed neuron moment but I think I just read a synopsis

of a study on children with Celiac and the predisposition to increased diabetes

in that group. I know there is higher percent of kids with DS that have CD and

kids with Ds that have diabetes (immune system compromised?)

Does anyone else remember seeing this info just recently?

Cheryl in VA

[Guest guest]

In a message dated 8/14/2002 11:04:55 PM Central Standard Time,

linman42@... writes:

> Hi,

> We just found out that tested positive for celiac disease.

HI

I am so sorry for .... And you. I do have a few questions was there

a reason to test or was this routine? and is this a forever thing like

diabetes?

Kathy mom to Sara 10 ............ not sure if Sara's ever been tested for this

[Guest guest]

Hi,

Thanks to everyone who responded about celiac disease (CD for short). I am

learning as much as I can about it and Dr. Len does have an article about it

at

<A HREF= " http://www.ds-health.com/ " >Down Syndrome: Health Issues - Medical

Essays…</A>

One other site I looked at had both diabetes type 1 and ds as sub topics.

had the test done because it affects the immune system and diabetes is

that type of disease. It has not been routine for people with DS in the past

few years. A blood test will detect if someone is positive for CD or not and

then further testing by and endoscopy is needed to determine if there is

damage to the small intestines.

And yes, it is life long - a wheat/gluten free diet needs to be maintained

for life.

Ahhhh poor amanda - yet another thing.

~ Mom to 11 DS and Diabetes Type 1 and 8 NY

[Guest guest]

Gluten Free Pantry (glutenfreepantry.com I think) has a lot of gf plus egg

free products. Their Tinkyada noodles are rice noodles and taste just like

" real " noodles. this diet seems hard when you look at it the first time,

but it gets easier. I remember the first time I thought about it for ,

I just got totally overwhelmed. Just start slow. I started by replacing

obvious culprits, rice noodles, rice spaghetti, then started reading labels

to get rid of the trace stuff. By the time I started the diet, I was used

to it.

Loriann AKA Flitter the Christian clown

Wife to Dewight

Mom to , 12 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 3 years and Strong Willed

[Guest guest]

--- linman42@... wrote:

It has not been routine for people with DS in the past

> few years. A blood test will detect if someone is

> positive for CD or not and then further testing by

> and endoscopy is needed to determine if there is

> damage to the small intestines.

It is now being recommended for any child with ds

having GI problems. Bridget has chronic constipation

and we had the blood work for celiac disease done as a

percaution. If you are having this test make sure an

IgA level is also drawn. The test is based on IgA (an

immunogflobulin) levels and ds can cause the normal to

be either a little too high or low which can cause the

test to be false positive or negative. This is from

our GI doc. It is a simple blood test (as if it is

simple te get blood from our kids, lol), so it was

reccommended to us.

mom to Bridget 9ds....still not liking school

__________________________________________________

[Guest guest]

In a message dated 8/15/02 10:44:11 PM Eastern Daylight Time,

hsmyangels@... writes:

> I started by replacing

> obvious culprits, rice noodles, rice spaghetti, then started reading labels

> to get rid of the trace stuff. By the time I started the diet, I was used

> to it.

>

>

So, Loriann, you are on the diet too? How did you know? Got some rice

noodles, spegetti today.

Diane

[Guest guest]

That would be me. I'm pretty sure I replied but if I didnt I'm sorry.

's had it since september. I found lots of products at a local health

food store and the manager showed me the book and ordered a bunch of things

for us.

A great brand is Glutano they make the best pasta. We dont feed the whole

family what amanda can eat, i tried that but it doesnt work. You can use bbq

sauce for grilling things and it tastes good if its a natural one.

Frookies has cookies in choc chip and dutch choc that amanda likes and then

theres pop corn, chips (only plain), pirate booty and smart puffs, fruit,

natural icecream like breyers, Hebrew National hot dogs (no wheat fillers)

and corn, rice and french fries.

Email me with specific questions and check out this site:

<A

HREF= " http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?sid=91hH9H0WXCWd5mE-

26102477770.93 " >Celiac.com (Site Index)</A>

~ Mom to 12 DS and Diabetes Type 1 and 8 NY

[Guest guest]

,

It was thought this time last year that Jordan might have Celiac, but after 4

weeks on the diet and no change in anything, she didn't have it. Any way, try

going to the health food stores. They have all kinds of gluten free stuff.

It's pricey ( that's health food for ya!), but it's worth it because you don't

have to rack your brains trying to come up with stuff she can eat.

Good luck,

Judi - Proud mother to Jordan 7, ds and Savannah 10 weeks, nda

Where ever you go....

There you are

[Guest guest]

Hi,

Our was diagnosed with Celiac disease in late 2001. It has been

bothering him some lately and we have had to restrict all bread with gluten

in it (the bread/grain/cereal/pasta group happens to be his favorite foods).

He is a real trooper because he has JRA, psoraisis and a lot of other

problems too but he never complains.

Dad to , Kristi, (all three Ds) and (Cri du chat)

Husband to C.

celiac disease

> hi everyone,

> I was just wondering how many of your children have been diagnosed

> with celiac disease? I asked this a couple months ago and got one

> reply. Can you beleive I can't remember who it was that answered!

> any way I have been in the kitchen on a regular feeling like a

> chemist trying to get the right cosistancy to make a variety of stuff

> that my daughter can eat. My other 4 kids aren't too happy about the

> new taste either. Any way I would like a chance to e-mail someone

> especially who has name brand products which are gluten-free. I am

> overwhelmed thanks a whole bunch.lisa

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

,

I am rather surprised that your patient had a gastric bypass in the face of

celiac disease. If the disease is well documented and still active most

would recommend a purely restrictive operation, a VBG or band. The same is

true of patients with inflammatory bowel disease. Why does she not tolerate

her supplements? If nausea or indigestion, simply wait a few weeks and try

again. Try chewable vitamins or liquid. How long post-op? Wait at least a

month. If she is having diarrhea, this is a new ballpark. She may develop

more significant problems, including fatty acid deficiencies and protein

malabsorption. Check frequent labs and if diarrhea is severe maybe even

faecal fats. Fat soluble vit. may be a problem. Good luck.

Celiac Disease

> Does anyone have experience in dealing with bypass patients who also have

celiac disease? I am fairly new to the bariatric field and have a bypass

pt. with celiac disease that is unable to tolerate her multivitamin and

calcium supplements.

>

> Thanks for any input.

>

>

>

>

>

[Guest guest]

Piece of cake ;

It appears you'll be able to control the balance of the inflammation

and resulting damage with the same method as for IBD. They're all

related to oxidative stress.

click here for details specific to celiac:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Search & DB=PubMed

and enter celiac glutathione in the box.

In this particular study...

____________________________________

Modern diets and diseases: NO-zinc balance. Under Th1, zinc and

nitrogen monoxide (NO) collectively protect against viruses, AIDS,

autoimmunity, diabetes, allergies, asthma, infectious diseases,

atherosclerosis and cancer.

Sprietsma JE.

Bennekom, The Netherlands.

Thanks to progress in zinc research, it is now possible to describe

in more detail how zinc ions (Zn++) and nitrogen monoxide (NO),

together with glutathione (GSH) and its oxidized form, GSSG, help to

regulate immune responses to antigens.

PMID: 10499817 [PubMed - indexed for MEDLINE]

________________________________

....the bottom line is the autoimmune diseases are reduced a lot with

the mineral zinc, the antioxidant glutathione, and nitric oxide

increasers.

The abstract goes into detail in a technical way. It's easy to

increase all of these substances with a couple of supplements. In

addition, glutathione specifically and generally, antioxidants,

reduce or eliminate complications caused by oxidative stress in

diabetics.

Duncan Crow

> Hi, All.

>

> It's been awhile since I've posted. I've been doing the Body

Ecology and

> Candida Control diets since September and feel loads better. I

recently went

> to my regular MD who doesn't believe in candida as it is only a

theory (save

> your comments - I thought it was an uneducated statement too). Now

here's

> the thing: I went to get a physical through him as my alternative

dr. is

> expensive and is not covered by insurance. My MD thinks I have

celiac

> disease as I show a high count of antibodies. Does anyone else have

this?

> The info I found on the disease is at

> http://www.niddk.nih.gov/health/digest/pubs/celiac/#2. The symptoms

are

> similar as candida. The diet is also similar, which explains why I

feel

> better. I think I need a second opinion - this looked a little

scary to me.

> My husband and I are trying to have a baby - and the potential

diseases

> associated with this don't look too pretty. I also want to get my

small

> intestine checked out to find out the condition of it - I'm hoping

it's not

> too late for it to continue to heal itself.

>

> And my last few symptoms are: chronic bloating and flatulence with

certain

> foods.

>

> Thanks, All.

>

> _________________________________________________________________

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