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Re: intro and question re: diagnosis

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From my understanding of the various test options, you would want to

begin by testing him for the two celiac genes. If you can get your

doctor to agree to it, you could have him tested for the antibodies

at the same time, but he should be on a heavy gluten diet for as

long as possible before testing for the antibodies. (You may also

want to make sure he produces those antibodies by testing for that

as well). The biopsy would probably be the last step after verifying

he has the gene and has an antibody reaction. I believe that there

is a 2 month gluten gluten gluten diet required before the biopsy

could be informative. Besides behavioral and the slow growth issue,

does he have any digestive issues?

>

> Hi,

>

> My son is six and has ADD and learning disabilities. I recently

> removed dairy and wheat from his diet and his ADD symptoms went

away

> and some of the LDs improved dramatically. I now suspect he may

have

> celiac, as he also has slow growth, which began at about seven

months

> with the introduction of solid foods.

>

> He's now GF (to the best of my knowledge and ability) and improving

> day to day. My question is, I understand that intestinal damage

begins

> to heal as soon as the GF diet begins. How soon do we have to have

him

> tested to get a valid result?

>

> Also, I am very confused by all the tests. I don't want to have my

> little boy stuck any more times than he has to be, so I'd like to

be

> clear on which tests to ask for up front. Should his father and I

have

> the genetic test first, on the assumption that if we don't have it

our

> son doesn't either? Or should we just ask for a biopsy for him?

>

> Is there a website that discusses the testing options?

>

> Thanks for any help you can give me.

>

>

> in southern California

>

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The short answer to your question:

Blood tests:

TTG - indicates if he is producting antibodies that might indicate

celiac disease

total IGA - to make sure the TTG reading is valid

**for the above 2 test to be valid, your son needs to be consuming

gluten for 2 to 6 weeks before them , depending on who you ask, but he

must be on a gluten diet**

CeliaGenes done by Prometheus labs - to indicate his potential to be

celiac. Just heard MD 2 celiac experts say on Saturday that 99%

percent of celiacs will have DQ2 or DQ8, so if he doesn't, his

likelyhood to develop CD later is small.

As the celiac genes are not completely understood the last I read,

testing you and your husband might not give a valid picture of your

son's status. From what I've read, this isn't a directly inherited

condition and there is a possiblity of genes mutating.

If you want other information about your son's health, besides the

celiac or no diagnosis, you could ask the MD to order tests like

ferritin, iron level, vitatmin B12 level, zinc - studies to assess his

nutritional status, as it is often compromised in a celiac child.

Maureen

>

> Hi,

>

> My son is six and has ADD and learning disabilities. I recently

> removed dairy and wheat from his diet and his ADD symptoms went away

> and some of the LDs improved dramatically. I now suspect he may have

> celiac, as he also has slow growth, which began at about seven months

> with the introduction of solid foods.

>

> He's now GF (to the best of my knowledge and ability) and improving

> day to day. My question is, I understand that intestinal damage begins

> to heal as soon as the GF diet begins. How soon do we have to have him

> tested to get a valid result?

>

> Also, I am very confused by all the tests. I don't want to have my

> little boy stuck any more times than he has to be, so I'd like to be

> clear on which tests to ask for up front. Should his father and I have

> the genetic test first, on the assumption that if we don't have it our

> son doesn't either? Or should we just ask for a biopsy for him?

>

> Is there a website that discusses the testing options?

>

> Thanks for any help you can give me.

>

>

> in southern California

>

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> 99%

> percent of celiacs will have DQ2 or DQ8, s

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

I have DQ2 and when we checked the kids we discovered DD has DQ2 and

DS has DQ8. DH was not happy when I insisted on him being checked

for celiac as well. Turns out he has the disease and has DQ8.

We cannot get anyone in our extended family to be checked. his

mother has type 1 diabetes, his sister thyroid problems. My mother

and sister have arthritis and GI disturbances. My sister also has

thyroid problems, very low weight and osteoporosis. My brother has

very low weight and GI problems.

not one of them will be tested for celiac because they might have it

and they don't want to stop eating grains. I have tried to explain to

them how I feel better now than I have ever felt and that once they

go gluten free if they have celiac they will be over the moon with

the improvement in their health.

oh, well, there are none as deaf as those who will not hear.

Shez

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  • 2 weeks later...
Guest guest

Thank you, Maureen and (seamaiden?), for your response to my

questions. I took my son to the doctor today, and I knew exactly what

to ask for.

I'm not willing to put him back on wheat for the antibody tests yet.

We're enjoying peaceful days for the first time since he was a baby!

Not only that, but he has an IEP (special ed plan) for his many

learning disabilities. In three weeks since I changed his diet, he has

achieved all his goals for the next nine months! So I think I'll just

let him catch up academically (and me emotionally) for awhile.

" seamaiden399 " wrote:

> Besides behavioral and the slow growth issue,

> does he have any digestive issues?

Yes, but pretty mild ones: gas, stinky poops, and sneaky poops (stains

in underpants despite good hygiene). All of these disappeared, BTW,

when I removed dairy and wheat.

I know he has a problem with dairy. What makes me suspect it's more

than just dairy is the slow growth (healthy 8# baby gained well until

he started solids, then height/weight went downhill--now at third

percentile for height). Based on parental height, he should be a 5'10 "

adult. Based on his current height, he'll be a 5'4 " adult.

(Note later: When I told him the loaf of whole wheat on the counter

was the last one we were going to buy, he begged for one last

sandwich. So I gave him a PBJ and an hour and a half later I had a

farting, fighting boy again. Clearly it's not just dairy.

I've read that breastfed babies develop the disease later and that the

later they wean, the more atypical the symptoms. Has anybody noticed

this with their own children?

>

> > My son is six and has ADD and learning disabilities. I recently

> > removed dairy and wheat from his diet and his ADD symptoms went

> away

> > and some of the LDs improved dramatically. I now suspect he may

> have

> > celiac, as he also has slow growth, which began at about seven

> months

> > with the introduction of solid foods.

> >

> > Also, I am very confused by all the tests....

> >

> >

> > in southern California

> >

>

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> Not only that, but he has an IEP (special ed plan) for his many

> learning disabilities. In three weeks since I changed his diet, he

> has achieved all his goals for the next nine months! So I think

> I'll just let him catch up academically (and me emotionally) for

> awhile.

Instead of just letting him catch up on his own with the diet

changes, why don't you request that the special ed team get back

together and create new goals? He's obviously doing much better,

but the therapies that the school offers will help him catch up that

much faster. He's obviously much more open to the therapies now.

You might as well take advantage of the opportunity for help from

the school while you can. He may eventually get to the point where

he won't qualify for an IEP so do it now.

> I've read that breastfed babies develop the disease later and that

> the later they wean, the more atypical the symptoms. Has anybody

> noticed this with their own children?

I think it depends on if the mom's gluten free or not. If not, the

baby's still getting gluten. That being said, I did nurse my 8 year

old for 10 months while eating whatever I wanted including gluten

and dairy (before my own diagnosis). Her symptoms are pretty

atypical so maybe there's something to that theory.

Trudy in NH

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You are right about Mom being gluten free when nursing. My first baby (now 49) started throwing up after nursing constantly. After 6 weeks the doctor decided that nursing was not working. He put her on a soy formula and she thrived, until she went on solid food. Wish I knew then what I now know. Both of us are Celiac, but only I am diagnosed. She had ADD as a child and has developed bipolar disease. But she is now much improved on a gluten free diet. It took me 4 years to convince her. Shirley in San Diegoclanmcculloch wrote: > Not only that, but he has an IEP (special ed plan) for his many> learning disabilities. In three weeks since I changed his diet, he > has achieved all his goals for the next

nine months! So I think > I'll just let him catch up academically (and me emotionally) for > awhile. Instead of just letting him catch up on his own with the diet changes, why don't you request that the special ed team get back together and create new goals? He's obviously doing much better, but the therapies that the school offers will help him catch up that much faster. He's obviously much more open to the therapies now. You might as well take advantage of the opportunity for help from the school while you can. He may eventually get to the point where he won't qualify for an IEP so do it now.> I've read that breastfed babies develop the disease later and that > the later they wean, the more atypical the symptoms. Has anybody > noticed this with their own children?I think it depends on if the mom's gluten free or not. If not, the baby's still getting gluten. That being said, I did nurse my 8 year

old for 10 months while eating whatever I wanted including gluten and dairy (before my own diagnosis). Her symptoms are pretty atypical so maybe there's something to that theory.Trudy in NH

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> > Not only that, but he has an IEP (special ed plan) for his many

> > learning disabilities. In three weeks since I changed his diet, he

> > has achieved all his goals for the next nine months! So I think

> > I'll just let him catch up academically (and me emotionally) for

> > awhile.

>

> Instead of just letting him catch up on his own with the diet

> changes, why don't you request that the special ed team get back

> together and create new goals? He's obviously doing much better,

> but the therapies that the school offers will help him catch up that

> much faster. He's obviously much more open to the therapies now.

> You might as well take advantage of the opportunity for help from

> the school while you can. He may eventually get to the point where

> he won't qualify for an IEP so do it now.

You're right--I am preparing to call a meeting to set new goals. He

just finished the first grade curriculum with two months to spare (we

homeschool, so we could move ahead when he was ready). It'll be

interesting to see their response when I ask for second grade goals

for a sped first-grader! Since his IEP is only one month old, I'm

hoping they won't kick him out of the program already.

>

> > I've read that breastfed babies develop the disease later and that

> > the later they wean, the more atypical the symptoms. Has anybody

> > noticed this with their own children?

>

>I did nurse my 8 year

> old for 10 months while eating whatever I wanted including gluten

> and dairy (before my own diagnosis). Her symptoms are pretty

> atypical so maybe there's something to that theory.

My kid's symptoms are atypical too. But he did stop growing when he

started solids, so thinking back he must have developed celiac at 6

months, though he nursed much longer. It's a mystery...

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My little guy was fat and happy as long as he was completely

breastfed, even though I didn't restrict my diet. I guess maybe there

are degrees of sensitivity.

Shirley wrote:

>

> You are right about Mom being gluten free when nursing. My first

baby >(now 49) started throwing up after nursing constantly. After 6

weeks >the doctor decided that nursing was not working.

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I am the mom of an autistic son who responded post diet. He was

already scheduled at age 3 for his celiac biopsy when the doctor

asked us if we were going to remain gluten free due to the radical

autism diet we began. When we said yes he said there was no reason

to do the biopsy until a later age if and when we wanted a

definitive answer about celiac sprue because doing this biopsy on a

3 year old was very young.

Does my son have celiac? We don't know. No one has been tested,

but my other two children's liquidy and yellow/frothy poops cleared

up by going gluten free, and my husband's 'canker sores' went away

on the diet as well.

I wanted to respond to you because you might also consider taking

out food dyes (red can cause hyperactivity), soy (can affect

children on the spectrum (ADHD/ADD is on the autism spectrum)), and

corn (in particular high fructose corn syrup).

My son is mainstreamed in second grade with no aide. He still has

autism, of course. That will always be something he struggles

with. He gets obsessions, but cognitive behavioral therapy makes it

better. It also means when his emotions get really really high he

loses his ability to access what he should do and goes only with

what his inner desires are, but still, most people don't even know

he has autism. He understands that he has to work on keeping his

emotions in check because it makes a part of his brain not work. He

is doing all this without medications, and hopefully we can keep it

that way.

So, the question really is, do you want to put him back on something

that will change his behavior in order to get a definitive

diagnosis? If yes, I would wait until the summer when he is not in

school. If your son does not have celiac but is gluten reactive

(behavior) you are a candidate for enzymes which if he has celiac

sprue he is not.

>

> Hi,

>

> My son is six and has ADD and learning disabilities. I recently

> removed dairy and wheat from his diet and his ADD symptoms went

away

> and some of the LDs improved dramatically. I now suspect he may

have

> celiac, as he also has slow growth, which began at about seven

months

> with the introduction of solid foods.

>

> He's now GF (to the best of my knowledge and ability) and improving

> day to day. My question is, I understand that intestinal damage

begins

> to heal as soon as the GF diet begins. How soon do we have to have

him

> tested to get a valid result?

>

> Also, I am very confused by all the tests. I don't want to have my

> little boy stuck any more times than he has to be, so I'd like to

be

> clear on which tests to ask for up front. Should his father and I

have

> the genetic test first, on the assumption that if we don't have it

our

> son doesn't either? Or should we just ask for a biopsy for him?

>

> Is there a website that discusses the testing options?

>

> Thanks for any help you can give me.

>

>

> in southern California

>

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> > My son is six and has ADD and learning disabilities. I recently

> > removed dairy and wheat from his diet and his ADD symptoms went

> away

> > and some of the LDs improved dramatically.

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There is a genetic test you can get done that will tell you that you

are a candidate for celiac (ie, negative test means absolutely no

celiac) that would not require his going back on gluten, but for all

the other tests you would need for him to eat quite a bit of gluten

for awhile.

Yes, our son grew in height and gained weight immediately. His

poops changed from 3+ per day to once per day. I believe he was

finally able to digest food, so he gained weight.

We get a high reaction to HFCS and less of a reaction to corn chips,

popcorn, etc. So we allow some corn as special treats, like at

parties.

Soy has problems and not only because it mimics casein - we don't

eat soy the way Asians eat it, and the amount we eat is too much.

Soy can mess with estrogen levels in the body if eaten in great

quantity.

Why won't he eat meat? Texture, taste or moral objection?

(LJL)

>

> Hi ,

>

>

> Did your son have growth problems? And if so, did you notice any

> change after removing gluten?

>

> Funny you should mention food dyes--a few days ago he had a spell

of

> hyperactivity and the only thing he had eaten was gummi worms. And

not

> a whole lot of them--maybe three. I figure it's either the food

dyes

> or corn syrup (didn't read the label, but almost all candy has corn

> syrup).

>

> Is it possible to react to HFCS but not to corn itself? Please

please

> say yes, because I don't want to give up cornbread. And I was

counting

> on using a lot of soy for protein, since he doesn't eat any meat at

> all. But I understand the soy protein molecule is a lot like the

> casein molecule, and his mil reaction is extreme, so...oh boy.

This is

> going to be interesting.

>

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(LJL) wrote:

>

> There is a genetic test you can get done that will tell you that you

> are a candidate for celiac (ie, negative test means absolutely no

> celiac)

His doctor is preparing an enormous list of blood tests for him,

including that one. That way they might take a gallon, but they'll

only stick him once.

> Yes, our son grew in height and gained weight immediately.

Very encouraging! I had heard of kids who didn't start growing for a

year...guess it depends on how damaged the villi were.

> Why won't he eat meat? Texture, taste or moral objection?

Who knows? He's six now, and he stopped eating it years ago. He had

oral-motor apraxia (we didn't know if he'd ever talk), and he still

has significant muscle weakness (can't use a fork), so it's possible

meat was just too hard to chew. As a toddler he ate what the rest of

us ate, but as the years went by his diet grew more and more

constricted. At the end it was just cheese sandwiches (no need for a

fork).

>

> > Did your son have growth problems? And if so, did you notice any

> > change after removing gluten?

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I am not sure what kind of quantity you're talking about in comparison

to the way tofu is used in the " Asian " diet... At least in Japan tofu

is popular fried in balls, or as a " steak " , or chilled with bonito

flakes on top. It doesn't seem to be an especially small portion to

me, although meal sizes in general are smaller in Japan. It seems to

me that tofu gets an awfully bad rap- and there also seem to be

conflicting evidence regardings its healthfulness. I feel that, as

long as you don't have an allergy or intolerance to it specifically,

it can be a healthy part of the diet. So I wouldn't dismiss it as a

protein option. However, there are many options for protein that may

be alternated with tofu. (Quinoa, nuts, beans, etc.)

>

> Soy has problems and not only because it mimics casein - we don't

> eat soy the way Asians eat it, and the amount we eat is too much.

> Soy can mess with estrogen levels in the body if eaten in great

> quantity.

>

> Why won't he eat meat? Texture, taste or moral objection?

>

> (LJL)

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The American food industry, as usual, took something that made in

the old ways was healthy. The quickly processed version is not

good for you.

>

> >

> > Soy has problems and not only because it mimics casein - we

don't

> > eat soy the way Asians eat it, and the amount we eat is too

much.

> > Soy can mess with estrogen levels in the body if eaten in great

> > quantity.

> >

> > Why won't he eat meat? Texture, taste or moral objection?

> >

> > (LJL)

>

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Then it might be a sensory problem. I'd keep trying to offer it in

various forms. I know quite a few moms whose children's diets became

more expansive once dairy was removed from their diets.

>

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I agree that the processed tofu/ soy products are a bit weird and not

necessarily good for you. Many of them contain gluten as well. At our

house we pretty much only use traditional block tofu or edamame. But I

really like using these ingredients, especially tofu.

>

> The American food industry, as usual, took something that made in

> the old ways was healthy. The quickly processed version is not

> good for you.

>

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Do you mind sharing the brand you use and where you buy it? I'm in So. Cal., so we probably have some of the same stores. I also have a Japanese market I've been meaning to try out.

Is this the really firm tofu? That is the only kind that really appeals to me; if is like the texture of cooked eggs, then forget it. I'm dying to try some grilled tofu, but I only like the firm, and was never sure what brand was GF. (I see so many with sauce, and I just want plain)

Thanks in advance. I've been meaning to ask this for awhile, so now that the thread came back up I have my chance.

Molly

I agree that the processed tofu/ soy products are a bit weird and notnecessarily good for you. Many of them contain gluten as well. At our

house we pretty much only use traditional block tofu or edamame. But Ireally like using these ingredients, especially tofu.

>> The American food industry, as usual, took something that made in> the old ways was healthy. The quickly processed version is not> good for you.>

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