Re: New celiac 3 months on gf diet, lab levels question!

May 3, 2006

Children are often glutened at school - pasta pay, math games with

food items, play dough, stickers, licking stamps, etc. Could that be

happening?

>

> Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our whole

> house is gf and we are very careful!!! Her first level at diagnosis

> was 22. Now, her level is 17. The doctor didn't seem too concerned

and

> said that she was " moving in the right direction " . He said that 6

> months from now, he wants her to be under 12. 17 did not seem like

it

> had come down too much. Is that the norm?

>

May 3, 2006

Children are often glutened at school - pasta pay, math games with

food items, play dough, stickers, licking stamps, etc. Could that be

happening?

>

> Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our whole

> house is gf and we are very careful!!! Her first level at diagnosis

> was 22. Now, her level is 17. The doctor didn't seem too concerned

and

> said that she was " moving in the right direction " . He said that 6

> months from now, he wants her to be under 12. 17 did not seem like

it

> had come down too much. Is that the norm?

>

May 3, 2006

Is she taking a medication with a hidden gluten?

Does she eat at others' homes?

Are the grandparents on the same page w/ respect to " gluten free " ?

I'd have them check again in another month or 3 and then worry

if it still hadn't gone back down. But perhaps that's just me.

I was totally (and joyfully) shocked when my numbers had gone

to zero in only 3 months' time. I don't think that's the norm.

Esther in RI

> >

> > Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our whole

> > house is gf and we are very careful!!! Her first level at diagnosis

> > was 22. Now, her level is 17. The doctor didn't seem too concerned

> and

> > said that she was " moving in the right direction " . He said that 6

> > months from now, he wants her to be under 12. 17 did not seem like

> it

> > had come down too much. Is that the norm?

> >

>

May 3, 2006

Is she taking a medication with a hidden gluten?

Does she eat at others' homes?

Are the grandparents on the same page w/ respect to " gluten free " ?

I'd have them check again in another month or 3 and then worry

if it still hadn't gone back down. But perhaps that's just me.

I was totally (and joyfully) shocked when my numbers had gone

to zero in only 3 months' time. I don't think that's the norm.

Esther in RI

> >

> > Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our whole

> > house is gf and we are very careful!!! Her first level at diagnosis

> > was 22. Now, her level is 17. The doctor didn't seem too concerned

> and

> > said that she was " moving in the right direction " . He said that 6

> > months from now, he wants her to be under 12. 17 did not seem like

> it

> > had come down too much. Is that the norm?

> >

>

May 3, 2006

Is she taking a medication with a hidden gluten?

Does she eat at others' homes?

Are the grandparents on the same page w/ respect to " gluten free " ?

I'd have them check again in another month or 3 and then worry

if it still hadn't gone back down. But perhaps that's just me.

I was totally (and joyfully) shocked when my numbers had gone

to zero in only 3 months' time. I don't think that's the norm.

Esther in RI

> >

> > Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our whole

> > house is gf and we are very careful!!! Her first level at diagnosis

> > was 22. Now, her level is 17. The doctor didn't seem too concerned

> and

> > said that she was " moving in the right direction " . He said that 6

> > months from now, he wants her to be under 12. 17 did not seem like

> it

> > had come down too much. Is that the norm?

> >

>

May 3, 2006

> >

> > Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our

whole

> > house is gf and we are very careful!!! Her first level at

diagnosis

> > was 22. Now, her level is 17. The doctor didn't seem too

concerned

> and

> > said that she was " moving in the right direction " . He said that 6

> > months from now, he wants her to be under 12. 17 did not seem

like

> it

> > had come down too much. Is that the norm?

Sorry for tagging a response on the back of someone elses message.

We are learning more about celiac disease and what we are learning

complicates the understanding of the disease. It is clear that T-cell

recognition and gluten-tTTG interaction is important to the disease,

therefore removal of the gluten does not remove tTG since tTG is

endogenous protein of the GI tract, and its covelant linkage to other

allergenic or antigenic dietary proteins could continue the response.

In an Ideal world one has to consider what the normal response to tTG

is in humans, let us say its a 3 and lets say that the starting state

is 22, the half life of antibodies in circulation is 120 days. And

let us also argue that the accuracy of the test is +/-20%. 120 days

is four calender months, at that time if the testing were perfect one

would expect the tTG antibodies to fall to 3(non specific binding) +

(22-3)/2 or 9.5 = 12.5 a guess would be that the levels would be at

15 or 16 after only 3 months.

The confidence range of that would be +/-20% or 3.0 pts and the

confidence range on the initial score would also be about 4.5 pts so

'statistically' speaking the result of 17 is not yet deviating from

the ideal. As I said in may not be ideal half-life decay curve from

the moment on removes gluten. If you are like most of here it

probably took you a few weeks to find all the little traces of gluten

sneaking into your childs diet. I have a Ph.D. in biochemistry and it

took me 4 months, even though removing the biggies certainly helped

(of course I am more set in my ways than a child who has parents who

decide what he eats). There were issues, like flour added to soups,

and the wheat in soy sauce I was unaware of. No one is perfect.

Even so had you been perfect, tTG likes to bind certain motifs, and

the gluten/food-protein interaction causes a great many food

reactions, and these foods can also bind tTG, so you have a certain

lag time before antibodies subside to consumed foods, elimination

most of the food allergans, and the time when the peak stimulation of

tTG response begins to subside to less than 1/2. The half-life of

antibodies are not the same, some are more stable and some are less

stable. B-lyphocytes continue to express antibodies even after the T-

lymphocyte stimulation disappears, they eventually die off, some are

retained as memory cells and go quiescent.

So cheer up! really! anyway because the declining of numbers is

consistent with the expectations under a gluten free diet and is

close to ideal. The peak stimulation of the celiac disease is on the

decline and so the search should be on dietary allergens that result

in secondary symptoms. In terms of GF 'accidents', if common

experience here is an indicator, chances are they will show up in

the 'I don't feel so good [pitter patter to the bathroom]' catagory

first before you will see a marked alteration of the antibody

response.

The only thing I would say is that early onset CD is the most

severe and gluten synsitivity is very high, I cannot say whether a

milligram per week of gluten will cause a rise in antibody titer, but

it certainly causes a persistence of disease in some individuals. At

least during the first year complete gluten abstinence should be

maintained. My impression is that sensitivity at this level as the GI

heals it will immediately recognize gluten contamination with a more

immediate (i.e. chowder time at the ole toilet bowl) versus longterm

response.

BTW, if the expected level is 15 +/-3 or 12 to 18 and the previous

level is 22 +/-4 or 18 to 26 the current value of 17 is within the

96% CI of the previous value, but also the expected value is in the

same limits. A test at 3 months only indicates a probable trend, even

under ideal circumstances. That sounds scarey but alas thats the

nature of the clinical examination versus natural variation.

The doctor wants to see your child in 6 more months, this is

relevant because the ideal level would be 2 half lives or 1/4 the

original nonspecific component value 19.5 or about 4.75 + 3 or

between 7 and 8, around 7.5. The error is about 1 pt so the standard

range is 6 to 9 and this is signficantly different from 18 to 26

score and the standard error ranges do not overlap, therefore at this

time if his score is closer to the upper relative to the lower range

then one has a basis for concern. The best you can do is keep your

cool and follow the rules and bide your time till the next test,

you'll be ok. Another alternative is to go over to my group " Gliadin

Science " and read up on all the fascinating science being done on CD,

it wont get rid of your worries but you'll probably fall asleep

trying to understand all the sciency jargon. :^).

May 4, 2006

We had some issues at school ourselves. It took me a while to figure it out,

because our

daughter didn't have blatent symptoms (her normal nausea and diarrhea) she only

had a

low level stomach ache and just didn't feel so good. I think she was getting a

more

constant low level exposure where she wouldn't get all of her normal symptoms,

but just

felt mildly icky. Some other possibilities to check into at school are:

How often is her desk cleaned? While your child might not be playing with

playdough or

cookies, the other kids are and they often go around putting their hands on ALL

of the

desks. Ask to let her/him be allowed to wash off their desk daily. Let the

teacher know this

could be an issue and ask when would be a good time for them to clean the desk.

I have

sent in baby wipes (the ones with just a bit of soap on them) for this purpose

instead of

just the antibacterial ones.

Does your child's class use hand sanitizer before going to lunch, or do they

actually wash

their hands? Many classes use the hand sanitizer because it is quicker than

getting 20+

kids to wash their hands. While Purell itself has been found to be GF, it's mode

of action is

to kill bacteria, not deactivate proteins such as gluten. I suspect there may

still be some

gluten on their little hands that they can react to. I have brought this to our

child's teacher

and now our daughter is sent to the sink instead of the hand sanitizer bottle.

The lunch table. Again, a prime place for little glutened hands to be touching

everywhere.

Also usually subject to sanitizer, NOT soap and water. We have had our little

one get in the

habit of spreading a napkin out over her place or to wash it off for herself. I

send the little

wet nap wipes with their lunches.

Make sure your little one learns that what brand name something is DOES make a

difference. My daughter made that mistake at first. She knew we had little fruit

snacks at

hime and so she took some from a friend at school. Wrong brand of course and she

paid

for it with 3 weeks of diarrhea. She has been learning to read labels for

herself and we

work a lot of what gluten might be called. I actually work on it at the grocery

store with

them. Our 9 yr old has gotten pretty good at it, though once in a while, he

misses

something.

These were some possible sources that we didn't think of at first, but I think

they did

contribute to her sore tummy. We worked at correcting these and her tummy aches

improved. Also, I have had to remind both my children and the teachers after

longer

breaks like winter, easter and spring vacations. Things have a tendancy to get a

bit too lax

after such periods.

Hope this helps.

Cheryl in Tampa

>

> Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our whole

> house is gf and we are very careful!!! Her first level at diagnosis

> was 22. Now, her level is 17. The doctor didn't seem too concerned and

> said that she was " moving in the right direction " . He said that 6

> months from now, he wants her to be under 12. 17 did not seem like it

> had come down too much. Is that the norm?

May 7, 2006

Thanks for your help. I am a neurotic RN and mom who has deal with

diabetes and health issues with my daughter since age 2. Her teacher

fully understands. We have her wash her hands with soap and water

before snacks and lunch; we cleaned out all of the playdough and

replaced with GF dough; I also cleaned the entire room play areas,

games, toys, etc. that may have come into contact with playdough

ever; before her snacks, the table is cleaned with clorox wipes (as

well as after neighbors eat their snacks to remove their gluten); I

replaced EVERYONE in her room's art supplies with GF varieties

(because they often share them); we stay away from stickers and

lotions of any kind; at lunch the tables are cleaned down before she

eats, she has a disposable place mat to eat on and even sits on a

covered stool (because the kids all twist and touch the stools); I

call every new product to inquire (even if the label seems GF); I

read every label every time; we use GF hair products, lipglosses,

tooth paste, kiddie makeup, etc.; we do not eat out much at all

because of my neurotic fear!!!; I am her room mom, Daisy leader,

Sunday school teacher, at every party, etc. (because I've had to be

with her diabetes); we have no gluten in our house; she's not

allowed to eat at other's houses; I mean, my husband calls me the

gluten police!!!! Therefore, I can not imagine that there is

anything possibly else that I can do or change that would help. Can

anyone else think of anything else I'm forgetting? Thank you all for

your help. It's great to know that there are others like you all to

rely on!!!

> >

> > Hello! My 6 yr. old has had celiac diagnosed for 3 months. Our

whole

> > house is gf and we are very careful!!! Her first level at

diagnosis

> > was 22. Now, her level is 17. The doctor didn't seem too

concerned and

> > said that she was " moving in the right direction " . He said that

6

> > months from now, he wants her to be under 12. 17 did not seem

like it

> > had come down too much. Is that the norm?

>

May 8, 2006

While I don't have answers, I am facing a similar dilemma. My son was diagnosed with celiac around Thanskgiving with a level of 100. While I cannot claim to have been as attentive as you have been, we have vastly changed his diet and behavior (altering all food and cleaning products, meeting with school teachers and supplying substitutes for everything, etc). He is now essentially asymptomatic, his vitamin absorption levels are all normal and his coloring has visibly improved, yet his 3-month labs were still 100---NO CHANGE! We have further tightened our regimes and are staying tuned for the next blood test; having spoken with others about this, one other person's daughter took a long time to react to the diet as well.

Carla

May 8, 2006

One solution for having young celiacs eat over at friends' houses

(which might not be an issue now but might become increasingly

important to her as she gets older) is to have her bring her own food.

Of course you may want to talk to her friend's parents before any kind

of extended visit, especially any visit involving food. This is what I

do sometimes, just bring an amy's microwavable meal, if there is going

to be a meal that I'm not sure I can eat, even as an adult. Of course

it will become easier as she gets older and able to protect herself

from the " gluten goblins "

we have no gluten in our house; she's not allowed to eat at other's

houses;

May 8, 2006