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Mamato2boys

Rrrrrggg....this Is So Darn Hard Sometimes :(

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As you may or may not know, my son is 3 and in daycare (both DH and I work full time). Tomorrow is of course, a very big food day for all of us, and the daycare is having a party. One of the workers asked me today if I was going to bring in treats for Ryan to have, or if I was going to keep him home. I was the first person to sign up for the party, and listed I would be bringing Rice Krispy treats (safe for Ryan, of course). So I said "I can't keep him home - if I didn't have to work I might, but I'll be bringing in goodies for everyone to have, and there might be some stuff that he can have too."

I know they're trying to be helpful, and that sometimes it's hard to deal with him because he'll sometimes tantrum if he feels left out. But he's getting old enough now that if you tell him "that will make you sick" he's able to grasp that.

Suggesting I keep him home kind of makes me feel like they look at him like he's some sort of leper or something. :( Sitting out on life just isn't an option - even if I was a stay at home mom. He's not much of a junk-food type of kid anyway, so I'm hoping that the kripy treats and whatever else he's allowed to have will be enough.


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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That must be frustrating. Perhaps you could sit down with the director and have a heart to heart explaining the whole emotional part of the disease. Perhaps they don't understand how hard the diet is or how left out it can make you feel. Hope your little guy makes it through the party okay.


~Angie~

Gluten free since May 2004

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I understand why you're upset. Do they think anybody who has a health concern can just stay home every time a challenge comes up? Can't she imagine how Ryan will feel if he is left out? I hope that he won't get glutened, though, by sharing other kid's treats.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I hope he doesn't get glutened either. :( I'll pack his krispy treat separately - thanks for pointing that out.

I think the director has some idea of how hard this is. She's a mom and has a good heart. When I sat down with her and the assistant director and explained that what we're facing with him is lifelong and could ultimately end his life if the diet isn't adhered to - they were shocked but seemed to understand the seriousness of this. It seems like they have, anyway. The person who suggested keeping him home was one of the "teachers" (as they call them).


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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I know how you feel. Even though I know it's keeping my kids healthy, it doesn't change the fact that this diet can be a big pain in the rear sometimes. I keep an upbeat attitude for the kids, but I still have my moments where I just have to vent. Emmie's pre-k seems to have something food related each week. I work part time, and with four kids there just isn't that much spare time to go hunting down gluten free subs for everything. Last week was pumpkin bread, this week it's spider cupcakes, pizza party and zoo animal cookies. I was up at 5 this morning making cupcakes and pizza for her to take to school. Then I had make their lunches....with the damn bread that you have to microwave to defrost, then toast.......THEN make the sandwich!

Sorry, guess I need to vent a little too, lol. I'm shocked that the school asked you that.....it's ridiculous to think that you would keep him home. Granted, I thought about keeping Emmie home today since all I could think about was cupcake crumbs everywhere. But, she'll be having a blast, and I know I've done as much as I can to keep her safe.


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Having the daycare staff ask if you were going to keep your little guy home was most insensitive. :angry: While their intentions seemed to be good in terms of not wanting your son to get sick, they could've certainly gone about it in a different way. I don't blame you for being upset; who would want their kid to miss a Halloween party, or any school activity, just b/c they can't have a "regular" cupcake? I'm a teacher, and I'm *sure* they wouldn't have asked if their peanut allergy kids were going to stay home. I agree that sitting out on life is not an option. We do absolutely everything with my son; we're not gonna let a little gluten get in our way! :)

This sounds like a true lack of knowledge and understanding. Now seems like a great opportunity to get them up to snuff about Celiac Disease and gluten as well as nicely letting them know that they did in fact offend you. I really do think they should know how you feel about this; there are going to be lots of celebrations during the remainder of the school year. Maybe you can develop a Celiac Disease 101 Fact Sheet for them.

I'm sending in gluten-free cupcakes and snacks/treats for my son, who is 3 1/2, to have during his Halloween party at preschool. I won't be there, only the "party parents" are allowed, but I have trust and confidence in the teacher and aides that they'll keep him gluten-free. I've educated his teacher and keep the lines of communication open. That's all you can really do. Good luck tomorrow and HAPPY HALLOWEEN!! :D


~Kristy~

Zachary (5 y/o son) -negative labs, no biopsy, gluten-free diet 3/06 with amazing results

*Enterolab testing: auto-immune response, main-Celiac gene/HLA-DQ 2, non-Celiac gluten sensitivity gene/HLA-DQ 3

"Congratulations!

Today is your day.

You're off to Great Places!

You're off and away!"

--Oh The Places You'll Go

by Dr. Seuss

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I love our school and parents. Our school has just implemented a wellness policy. The kids can't have any snack that's over 40%fat. This means no cookies, cupcakes, cakes, etc. It's awesome. There's always fresh fruits and veggies and healthy treat for Thomas to choose from. It's great not having to try to bake all the time to try to duplicate gooey treats others bring in. Fruit kabobs have been a real favorite! :)

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I'm *sure* they wouldn't have asked if their peanut allergy kids were going to stay home.

EXACTLY !!

She did add "I know that we had a kid last year that was allergic to (something - I was tuning her out because I was ticked), that kept her son home."

Even if I had the luxury of staying home whenever I wanted, that simply isn't fair to Ryan. He's gotta be a kid too.

Plus I have to admit, it did come to mind that maybe she was asking because it would be easier on HER if he wasn't there. :angry: This is the same place (different staff person) that commented that some of his Mary's Gone Crackers "looked like birdseed", and consequently, he'll no longer touch with a ten foot pole.

I haven't even talked to them yet about PlayDoh, paints, cross-contamination (we're new to this). I'm really dreading that conversation because their heads may very well explode. :lol:


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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Speaking of Play-dough.....I volunteered this year to provide gluten-free dough for the class, since Emmie is so sensitive, and that stuff seems to find it's way into the oddest places.

Well, I'm rethinking my plan now. It hasn't been yet two months yet, and they need more play dough! SO, I'm online now stocking up from discount school supply. I'm thinking now I should have just sent Emmie in with her own personal stock of dough, b/c this is going to get pricey. So anyway.....there's a piece of advice for anyone not in the school years yet. Providing the whole class with safe play dough may not be the brightest idea I had!


Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis

Age 8- dx'd Celiac March 2005

Age 6- gluten-free/cf, allergy related seizures

Age 4 - reflux, resolved with gluten-free/cf

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Speaking of Play-dough.....I volunteered this year to provide gluten-free dough for the class, since Emmie is so sensitive, and that stuff seems to find it's way into the oddest places.

Well, I'm rethinking my plan now. It hasn't been yet two months yet, and they need more play dough! SO, I'm online now stocking up from discount school supply. I'm thinking now I should have just sent Emmie in with her own personal stock of dough, b/c this is going to get pricey. So anyway.....there's a piece of advice for anyone not in the school years yet. Providing the whole class with safe play dough may not be the brightest idea I had!

Ohhhhh I'm glad you mentioned that because I was going to do that very thing ! :o


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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They suggested you keep him home?!?! :o

That's horrid. My condolences on having to deal with idiots. :angry:


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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They suggested you keep him home?!?! :o

That's horrid. My condolences on having to deal with idiots. :angry:

LOL !!!! :lol:

So they had a sign-up sheet for all of us to put down which snacks we were going to bring. I was the first one to sign up, and I put down rice krispy treats. (Which, btw, came out YUMMY with Erewhorn crispy rice and Enjoy Life chocolate chips melted on top !!). ANOTHER parent made some too (plain) ! :angry: I packed Ryan's separately in his lunch box, and sent some watermelon too just for him (which he loves). He's the type of kid that if you just EXPLAIN to him that he can't have something because it'll make him sick, he usually accepts that. Because they're in a hurry I think they tend not to do that, which is why they run into a problem. So I told his teacher and the assistant director "if he asks for something he can't have, just explain to him that'll make him sick, and offer him an alternative. That's what I do at home and he does fine with that."

Seems like common sense to me - after all, that's how I would want to be treated.

Anybody else feel like they have to do a lot of hand-holding with their kid's school ?


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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I love our school and parents. Our school has just implemented a wellness policy. The kids can't have any snack that's over 40%fat. This means no cookies, cupcakes, cakes, etc. It's awesome. There's always fresh fruits and veggies and healthy treat for Thomas to choose from. It's great not having to try to bake all the time to try to duplicate gooey treats others bring in. Fruit kabobs have been a real favorite! :)

Hopefully, they'll allow cookies and cupcakes and cakes that are under 40% fat and are healthy! ;) It amazes me how many people are unwilling to modify their recipes to make things healthy, but man... it can be tasty! :D


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Sounds like he ended up doing pretty well yesterday. He did tantrum once because there were cupcakes there and he wanted one. The teacher told him that it would make him sick, and that the rice krispy treats I sent were so much better, and then gave him an extra one. :)

He ate more sugar yesterday than he's probably eaten in the last six months - and BOY what a difference in his behavior - and not in a good way ! :blink: Part of it was excitement I'm sure, but man...he was bouncing off the walls and driving me nuts. How do people who let their kids have a ton of sugar deal with that on a daily basis ?? :blink: He was still a little surly this morning, but better.


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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I'm glad things seemed to go well for your little guy during his Halloween Party. :D Are you still going to consider talking to the director and staff again?? It might save you some stress during the holiday parties. A little refresher course in Celiac Disease and sensitivity of individual differences never did any harm! ;)

My son was very happy with his gluten-free cupcake, cookie and pretzels. Life was good in toddler-land. :P I'm happy that my school district still allows things like cupcakes. While I don't condone or practice feeding my kids like crap, I do feel kids need to be kids and should be afforded the opportunity (and fun!) of bringing in birthday cupcakes instead of birthday carrot sticks. :blink: I would be most disappointed and, honestly, irritated if something as "classic" as birthday cupcakes were banned from his school.


~Kristy~

Zachary (5 y/o son) -negative labs, no biopsy, gluten-free diet 3/06 with amazing results

*Enterolab testing: auto-immune response, main-Celiac gene/HLA-DQ 2, non-Celiac gluten sensitivity gene/HLA-DQ 3

"Congratulations!

Today is your day.

You're off to Great Places!

You're off and away!"

--Oh The Places You'll Go

by Dr. Seuss

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Yes, I'm still considering talking to them. What I want to do is educate them on issues such as cross-contamination, gluten in play-doh, etc. I don't feel like I'm comfortable enough with the info yet to really say anything at this point. I also feel like I need "proof" - something printed out and "official" looking to show them. Otherwise I'm pretty sure they're going to think I'm just some weirdo. Ok - they probably already think that, lol. But I need something to at least back up what I'm saying. Is there any such thing as a patient education pamphlet on celiac disease ?


Ryan 10/13/03 - milk allergy diagnosed at five months after receiving first bottle of milk-based formula, reacted instantly with facial hives/swelling...later diagnosed with egg, cat, dog allergies as well. Also allergic to soy despite allergist denying. Recurrent diarrhea/chronic soft stools undiagnosed until 9/19/06 - GI doctor said recurrent diarrhea not a problem. Tested through EnteroLabs:

Fecal Antigliadin IgA 15 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 352 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 11 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0503

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

Acute/Chronic Colitis Stool Test

Fecal lactoferrin Negative (Normal - Negative)

Aiden - 7/29/06 No known allergies thus far, but will be raised on gluten-free/CF/soy-free diet since both DH and I carry GS gene.

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Guest nini

I would have been offended if they'd asked me to keep my child at home... That is just NOT an option. I think a little education goes a long way. I found some pre written letters on Cel Kid's network that you can print out and give to your childs school... they should work with pre schools too.

I did the providing play dough for the entire class too, but I made mine from scratch instead of buying it. It was a lot of fun to make and it kept well in Ziplock baggies or tupperware type containers. I instructed them if it starts to dry out add a little more water and knead it in, if it starts to get too sticky at rice flour or corn starch (both of which I provided small baggies of for them) That way I wasn't having to replace it constantly.

This year in first grade they don't use playdough for anything so I don't have to do it this year! Well, her teacher said if they do decide to use some in a project she'll let me know in plenty of time so I can make some for the class. It's really easy and cheap.

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