strawberrygm

i am in west tennessee, 1 hour from florence alabama.

decatur isnt much further.

hello there!

i am new to being a celiac parent too! we can learn together!

my dd is 9. i also have a 2 1/2 yr old and a 6 month old.

last year i sold the daycare that i owned, and i had a celiac student i cared for.

click on my user name, find the posts started by me from back then for a few ideas on what NOT to do when dealing with teachers, daycare workers, etc.

i wish you the best of luck

ok my ex husband has already ticked me off

he has talked to some doc that bowls with him that supposedly works at st jude who tells him celiac is no big deal and that it is ok for her to have gluten, just in moderation.

so i just told dd that her dad has talked to a doc who specializes in cancer, not celiac, and that while her daddy trusts him and he may be a great doc who means well, he doesnt know as much as our specialists and she is to do as her doc at vandy tells her.

thats just what i am afraid of, us working hard to get her gluten free and then her going over there and him not caring and doing what he thinks is fine.

we finally got the results of dd's second set of bloodwork back.

the total IGA went down from 56 to 46, and the test that is supposed to be at least 20 to be normal, hers is 0.4.

i cant remember the abbreviations.

i will find out tomorrow if they want us to hold off on the diet until an endoscopy is performed or not.

however, i figure i should go ahead and place an order for foods and snacks to get started.

i have been looking at glutenfreemall.com. we live in small town america, so online will be my best bet for foods.

what on there do you recommend? what do you say is horrible? are the cheaper brands as good as the pricey ones?

it is so close to the end of the school year, should i go ahead and replace her art supplies now as well or wait till next school year?

i am also going to start a support group here, anyone have any suggestions about that as well?

guess this means i will be sticking around this board, and i look forward to getting to know you all!

see they told me that it looked like she DID have celiac, and that we are running this second blood work to confirm it.

this is from a pediatric gastro at vanderbilt childrens in nashville.

The following is the results of dd's first round of tests.

Care to translate??

We are still waiting on the second round results.

04/14/08 15:40 [ ***Duplicate Order Cancelled*** The "Tissue Transglutaminase Antibody ♦ (tTG), IgA" was ordered separately, in duplication of the screening ♦ test included in the more comprehensive "Tissue Transglutaminase ♦ Antibody, IgA with Reflex to Endomysial Antibody, IgA Titer by IFA". ♦ See explanation in TEST INFORMATION paragraph below. Duplicate testing ♦ cancelled.] MiscChemsENDOMYSIAL IGA AUTOABS: 0.0 EAATT: NOT DONE Because the Tissue Transglutaminase Ab, IgA was negative, ♦the Endomysial Ab, IgA titer was not performed. ♦TEST INFORMATION: Endomysial Ab, IgA ♦Endomysial antibodies are screened using an ELISA tissue ♦transglutaminase (tTG) assay. All samples which are ♦positive are titered by IFA. The endomysial antigen has ♦been identified as the protein cross-linking enzyme known ♦as tissue transglutaminase. ♦Performed by ARUP Laboratories, ♦500 Chipeta Way, SLC, UT 84108 800-522-2787 ♦www.aruplab.com, Edward R. Ashwood, MD - Lab. Director

04/14/08 15:40 [ ***Duplicate Order Cancelled*** The "Tissue Transglutaminase Antibody ♦ (tTG), IgA" was ordered separately, in duplication of the screening ♦ test included in the more comprehensive "Tissue Transglutaminase ♦ Antibody, IgA with Reflex to Endomysial Antibody, IgA Titer by IFA". ♦ See explanation in TEST INFORMATION paragraph below. Duplicate testing ♦ cancelled.] SPEPIGA QUANTITATIVE BLOOD: 56*

My dd is waiting on test results. She is 9.

Her first IGA level was 56.

We are waiting on the second round of bloodwork.

The docs dont want me to start her on the diet yet b/c if i get her off of it, it will skew the test results.

Yet today I had to pick her up at 1030am, doubled over with stomach pain.

When I sent her in to school, she was happy and ready to go! I did not expect a call.

Yesterday I sent her in to school crying, yet she never called.

Is there anything I can give her for pain in the mean time while we wait for results??

her CF test was done at LeBonheur in Memphis, appx 8 yrs ago. I am not sure what method they use.

I did not like the staff or docs we dealt with there.

We now use Vanderbilt Childrens in Nashville.

Our docs from Vandy faxed orders to our local hospital for bloodwork, they want to redo it to confirm celiac diagnosis. Our hosp doesnt read that test, so they have to send it to another hosp and then that hosp will send it to the Mayo clinic. So, I have to wait a week for results!

see that freaks me out too because when dd was 2, they tested her 3 times to get a negative result on cystic fibrosis. they used the sweat test, the first 2 were right at the breaking point, the 3rd one they called negative.

she is 9 now, is it possible that we would have gone this long with out finding out?

i am not sure.

The nurse called me this afternoon.

She said my dd's IGA level is 56 and that normal is 68 to 300something.

They want to retest her blood again to confirm.

And then they will scope.

What was everyone elses levels?

the ones that have * beside them are out of normal range according to the site

oh ok.

well heck i dont know.

he told me they were testing her for celiacs.

what i posted is all that was shown on the site.

i wonder if they didnt post them, or what he is planning?

i know i have to call him tomorrow to give him an update on how she has felt all week.

thanks for trying!

i will keep you all updated!

do you know what any of these results mean?

My dd has been tested for celiacs.

I have the lab results of tests ran over the past few weeks pasted below.

What do they look for regarding celiacs?

Do these look positive or negative to you?

Anything jump out at you?

Thanks so much!!

04/14/08 16:16 UABasicCOLOR: YELLOW CHARACTER: CLEAR Specific Gravity UA: 1.008* PH Urine: 8.5* Glucose Urine: Negative CLINITEST (PED SCR): Negative ALBUMIN URINE: Negative KETONE URINE: Negative UROBILINOGEN: 0.2 LEUKOCYTE ESTERASE: Negative NITRITE: Negative CATHETERIZED: Not Indicated

04/03/08 03:20 UABasicCOLOR: GREEN CHARACTER: CLEAR Specific Gravity UA: 1.011* PH Urine: 6.0 Glucose Urine: Negative CLINITEST (PED SCR): Negative ALBUMIN URINE: Negative KETONE URINE: Negative BILIRUBIN: Negative UROBILINOGEN: 0.2 LEUKOCYTE ESTERASE: Negative NITRITE: Negative BLOOD: Negative CATHETERIZED: No

04/03/08 03:20 CBCWBC: 6.4 Hemoglobin Blood: 13.0 PCV BLOOD: 39 PLATELET COUNT: 261 Red Blood Cells: 4.61 MCV: 85 MCH: 28.2 Mean Corpuscle Hemoglobin Concentration: 33.2 Red Blood Cells Width Distribution: 12.9

04/03/08 03:20 DifferentlNEUTROPHILS %: 31.0* LYMPHS %: 58.2* MONOCYTES %: 7.4 EOSINOPHIL %: 2.5

04/03/08 03:20 BasicMetabSodium Blood: 136 Potassium Blood: 3.7 Chloride Blood: 105 Carbon Dioxide Blood: 27 Urea Nitrogen Blood: 7 Creatinine Blood: 0.44 Glucose Blood: 107 Calcium Blood: 9.7 AN-GAP: 4

04/03/08 03:20 CompMetabBILIRUBIN TOTAL BLOOD: 0.9 ALKALINE PHOSPHATASE BLD: 372* SGOT Blood: 23 SGPT BLOOD: 12

04/03/08 03:20 RoutChemsAMYLASE BLOOD: 14

05/13/04 13:30 Microbiol.GasU: Negative

My daughter is 9 yrs old.

She has had ulcers since 5 yrs old, anxiety, and stress.

She is 4 ft 7, weighs 65lbs.

She has been having severe unexplained tummy pain for 6 weeks now.

Constipation started the last 2 weeks, now cleared with miralax.

She has been tested for appendicitis, uti's, kidney infections, etc.

Yesterday bloodwork was drawn to test for celiacs.

Then we will have a scope to confirm any results, as well as check on the status of her ulcers and erosion of her esophogus.

I am familiar with celiacs, because as some of you may remember, i used to own a daycare and had a student diagnosed with celiacs.

Any tips or questions I need to be asking or looking for as we wait for results?

Wow, sounds like a rough afternoon. When you have gotten over the worst of the experience, you might consider that you accidentally pushed all her 'mom guilt' buttons. Here she is THE MOM, and she knows less about taking care of her daughter then you do.

It's also possible that she shouldn't be eating gluten either and that's why her mood is unpredictable.

Either way, you're still fabulous. Don't forget that part.

what a sweet response

thank you for that

i was expecting to get flamed on here, but i just had to get it off my chest

it is so disheartening that here i was trying so hard to learn more and for it not to be appreciated, let alone turned away and be accused of not caring, i just can not and will not take that

i am sure i did push her "mom guilt' buttons, but honestly, someone needed to for her daughters sake. the child is only 3 and the mom is gonna have to learn to deal with people better or she is never gonna get anywhere.

well girls, it all just blew up

i called the mom to talk with her b/c her daughter isnt here today

the mom had mentioned that the local pediatrician was going to have a meeting for her and her hubby and her inlaws explaining celiacs and asked if i would come

i had told her heck yes i would come, my whole staff would come, and we would even host the meeting

this was yesterday that she said this

so today i had not heard from her at 1pm.

trying to be proactive, i called the doc and i scheduled the meeting

so then i called mom and told her i had scheduled the meeting, thinking she would be happy that i was involved

she wasnt, she seemed pissed

so then the conversation moved on to her dd

i told her i wanted her to bring her dd's food on a plate each day b/c i had learned online that cross contamination could occur via pots, pans, and utensils

she then began to fuss and it ended up we were yelling at one another (which i shouldnt have done, but you will understand more why as you read more)

she said i should have known better than to touch her dd's food with a spatula or something that had touched someone elses with

how was i to know that if she never told us?

when her dd first started with me we did not know she had celiac. her mom told me she could not have oreos or cupcakes, but her dad later told me she could have them, that he gave them to her at home. so when we would have a bday party i would let her have a small amount. dad knew this and was fine with this. mom just today blows up at me about this, which happend last summer.

i told her i had been online last night and found alot of information.

i asked her if she knew gluten was in play-doh. she said she did already know that.

i asked her why she had not told me this, she could not come up with a good answer. she told me, well it says on the ingrediant label of play-doh that it contains wheat. how am i supposed to know to look? i have never heard of celiac before her, and was never told until i came on here last night that it was not just in food, but other things as well.

i asked her if she knew it was in paint, and that certain baby wipes could contain it, as well as diaper creme, and hand soap, etc.

she got mad at me for knowing these things that she did not know.

i told her that if she had made me aware of the gluten in play doh or paint, etc that i would have never let her child use those things, that i would have had her color or do something else while the other kids used those possible dangers.

i told her she should have provided me with things to help me know these things, that i have 12 other kids in my care, 3 of which have differing food allergies and that i can not be expected to remember every detail and that i needed to be provided lists and things.

i told her that for her daughters sake she was gonna have to learn how to communicate better with people and not get mad at them for asking questions b/c she was gonna have to deal with this every day for the rest of her daughters life

she said she was tired of me asking the same questions over and over again

i asked her, "do you trust me and my staff with your child?"

"i have mixed feelings she said."

i told her my staff and i needed to be trusted and that i would not care for any child whose parents did not trust me

i told her i was busting my ass to care for her child and every child in my care and that overnight i had learned more about celiacs than she knew and that while i did not mind to research this or any need a child might have, it was her responsibility to share information with me and my staff and let me know what to look for and that she had not been doing this and i was very frustrated

you do not know more about it than i do, she said, that is just b.s.!

but sadly it is true that i do know more b/c i now know about the paint and the soap and the babywipes and the pots and pans and spatulas, none of which she knew about or told me about.

and then she went so far to say that b/c i asked the same questions over and over that i had a lot of growing up to do, and that me and my staff needed to start putting the children in our care first.

when she told me i did not put the children in my care first, i told her we were thru and that she needed to come get her daughters things before 5pm this evening.

awww, i do wish i were closer to you ladies so that i could care for your children.!!

i am located in savannah tennessee

i posted my website on my homepage

i will keep posting here as i have more questions and more updates....

thank you all so much for your help!!

does your child's school require that you provide a doctors note for proof of diagnosis, along with other important information?

I am not here to flame anyone, so dont worry about that.

I am here to get advice and suggestions and thoughts.

I am here to play nice.

I totally understand how this is and should be a touchy subject for all of you, and i am certainly in no way going to try and make it seem as though i dont care or that i dont want to help.

I certainly did not mean to come across as rude in any previous post, nor do i want to in any future posts here. :-)

I am sure lots of you have had issues with schools and preschools, etc, be it on celiacs or another issue. It is inevitable.

I am so glad I came here b/c i have learned more in the past several hours visiting this board than i have in the past several months from mom.

i am not here to flame mom, but i would like to explain to you all what frustrates me as the teacher in this situation so that you can understand my point of view and so that maybe it will help you in your dealings with teachers, etc.

I have been provided with nothing in writing from the mom or any doctors.

Any and all printed forms or information I have on gluten or celiacs are things I have took the time to find and print.

Mom told me yesterday that she wishes we (my staff and I) would just get it and never have to ask another stupid question again.

Again, i get it that she is totally stressed out and worried. I can only begin to imagine what it is like for a mom of a celiac.

However it does hurt me and frustrate me that she would get mad for me asking a question. i tried to explain to her that i am only human (as is everyone) and that yes, i may ask a question that to her seems so simple but to me it is a real question, and that i am liable to ask the same question again in a few weeks. Not b/c i dont care or i dont listen, but b/c it is alot to remember.

i do not mind at all coming to this board, or doing any research on celiacs or any other issue or need that a student might have. I enjoy it actually, and it will only help me to help them and others in the future. i do wish that she would supply me with what she finds when she is researching or visiting the doctors too. when she first told me of the diagnosis, i was online like crazy searching for sites with information and stores where she could find the proper foods. i was emailing her at least once a day with links to my findings. never once did she reply to me or share anything she might have found. that frustrates me b/c i am trying and willing to work together on this and there are times i feel like i am not getting any help, only accusations.

coming here was the first i have ever heard of the soaps and paints and play doh and anything other than food being glutened, or the chance of a celiac being gluten by touching something, not actually eating a plate of it.

the mom did tell me yesterday that if her child is glutened, the reaction will last for 6 months!

now please dont let me offend any of you, i am just stating my situation and trying to explain where i am coming from.

this child also has an epi pen in her diaper bag, as she is allergic to milk, diary, turkey, and peanuts.

i do my very best to train and educate my staff on this any all of our students food alergy issues.

mom said that her doctor has offered to have a meeting with the mom, dad, and grandparents on celiacs and asked if i would come. i was so excited, i told her heck yes i will be there, my entire staff will be there and i will even host the meeting at my school so we can have enough room for everyone.

thank you all for talking with me and helping me to learn more. i do really appreciate it.

another question:

what if the child gets "glutened"? say by soap or paint or anything....

how long will she have reaction for? how long do the effects last?

Thank you for going to so much trouble. I know it just seems like the right thing to do to you, but very few people go the extra mile like you are!

Thank you for saying this,

the mom seems to think i should be an expert on celiac and know just as much as she does and never have to ask a question

i know she is stressed and frustrated...but gosh, i am trying.... ya know?

Yes, Play-doh brand has gluten.

Paints can also have gluten.

Thank you for going to so much trouble. I know it just seems like the right thing to do to you, but very few people go the extra mile like you are!

well thats just crappy b/c we have name brand play-doh b/c the other is just so nasty and gets too hard too fast.

the paint is school supply washable paint

the child is a thumb sucker too

i dont mean to sound stupid...but...is there gluten or wheat in playgound dirt? she will suck her thumb after playing outside while standing in line to wash her hands.

i googled and found this forum on here :-) for play doh recipe and i have printed it off for mom

Open Original Shared Link

i also found this post when looking for gluten free washable paint and i have printed it for her also

Open Original Shared Link

so even the soap we use to wash our hands can have gluten in it?

and the parents choice baby wipes she sends for her can have gluten?

even the pull-ups?

what about diaper rash creme?

damn

i feel so bad for everyone having to deal with this in their lives....

is there anything you DONT have to check on??

wow

Welcome to the forum! Wow, if only more preschool owners were more like you...

I would suggest you ask the mother of the Celiac child to bring in one plate per day plus snacks. This will keep it easier and neater for you.

Just a couple of quick suggestions to keep this child safe... Are tables cleaned thoroughly before eating? Is any play-doh used in the preschool? If so, this could be a source for cross contamination. Has the mother approved all art supplies as being gluten free? Just because a product isn't intended to go in a student's mouth doesn't mean that it won't. All it takes is a crumb (or drop) for a Celiac to get sick. Is the child supervised heavily during mealtime to ensure that no one else is touching her food or trading foods?

Again, hats off to you for being concerned about this child's well being.

Yes, tables are cleaned with soap and water and then sanitized with bleach and water before and after every meal.

Hands are washed (adults and children) before and after every meal.

Yes we do use play-doh.

Yes we do use paint.

Never realized those could be an issue.

Is it b/c a crumb of food could get into the paint or play-do or is there something actually in these items that has gluten in it?

Yes, all the children are supervised at meal time and luckily no food swapping has occured or been attemped!!! (i will knock on wood as i say that b/c sure as i dont she will get frisky tomorrow)

Thanks for the hats off.

I am not, nor will i probably ever be, an expert on celiac, but i do want to do my best to care for all of the children in my care.

I really appreciate all the thoughts and suggestions anyone here will give me!!

hello everyone!

this is my first visit and my first post here.

i own a childcare center, and i have a student who has celiac.

she has been with me over a year now, her mom got the diagnosis in august.

i would like to know what you as moms do in regards to your child and what/how they eat when they are at preschool/daycare/babysitter/public school/etc.

do you send a sack lunch or a lunch to be heated everyday?

do you send food you have bought or prepared in bulk for the teachers/adults to prepare as they need?

what works best for you and why or why not?

currently mom brings in foods she has prepared or bought, in fairly large quantanties. i keep it here and we prepare what we need each day. usually works fine for us, except for space constraints it is sometimes inconvienient with all the regular foods, gluten free foods, baby foods, etc that we have. But i want to make things easier for us and mom and mainly for the child.

of course if the child has diarreha at night or over the weekend, the mom worries about whether she may have gotten ahold of something with me. i write down for mom each day what the child is offered.

on days i am not here, there have been a few instances where the staff would ask the mom if she could have this or that, which worries the mom.

other childcare providers i have talked to say they have their children with special diets bring a plate each day for their child, the provider heats it up and prepares it, then puts the plate in the childs cubbie so that the mom can see how much is left and know what the child did and didnt eat and how much of what the child ate.

i want to do what is best for everyone involved.

any tips or thoughts or advice ya'll could share would be greatly appreciated!