catgriffith

Thank you. We had a wonderful meeting with the principal, who bent over backwards to help make next year's transition into first grade SO much better than I'd even hoped. I was able to request the teacher I wanted for her, scheduled a meeting with her before school starts, plan out a meeting with the guidance counselor, school nurse and even the town's director of food services from the cafeteria. And yes, my incoming kindergartener will have the OTHER k teacher, not the one that this happened with. So I felt I was able to regain control over a difficult situation, and that I had his attention, time and understanding. Feel so much better now. Thanks for all of the great posts. Emily

Yay!!!!!!!! Awesome. Have a great year!

Hello there friends

I am so sad tonight. It has been an emotionally draining few weeks. My 6 year old, Grace, was diagnosed with Celiac disease a little over two weeks ago. It has been a rollercoaster for all of us, much like it was for all of you in the early days, I'm sure. The hardest part for me is the sadness I am witnessing each time we have attended the all too frequent end of the school year parties, coupled with graduation parties and family barbeques. Each time we go to one of these events, I see this sad look come over my little girl's face as she examines the buffet table, laden with foods, and especially, with those tempting desserts. And yes, I come prepared with her own baked goods and even candy. But it's the social component she is struggling with...seeing her friends eagerly reaching for treats on the table that just weeks ago, she too reached for with enthusiasm. And now she feels left out. We have spoken at great length with her kindergarten teacher about the importance of knowing ahead of time when there will be a birthday party at school.(There were 7 in the last 2 wks!) We've also had meetings with her to explain the physical and emotional side of celiac disease. And yet, two days ago, knowing what she did about my daughter's situation, the teacher wheeled in an enormous cake for the class - without telling us ahead of time - and served a piece to every child in the class, except for my little girl. Three of the children were allowed to have ice cream, as they had been absent for a previous ice cream party. When Grace raised her hand and explained she couldn't eat the cake, and asked if she could have a small bowl of ice cream instead, the teacher said no, that there wasn't any left. And so she sat there, watching everyone enjoy a special treat, feeling left out. Last night, my daughter cried herself to sleep over having this disease. My heart aches for her too. When she awoke today to the last day of school, she cried and said she didn't want to go, and asked if she could sit with me at the school's end of year Catholic mass. At the church, I approached the teacher and explained how difficult the past few wks have been on her, and that she needed to be sitting with her mom this morning. And the teacher said, and I quote, "I know. She was crying when she came into school. But she should sit with the class. We can't give into this." Despite my explaining to her that a parent isn't "giving in" as if this were a tantrum, but is trying to make a tough situation easier, I was turned down. Case closed. I am heartsick that a kindergarten teacher could be so indifferent to a little one's needs on the heels of a major life change. I have set up a meeting with the school principal to request a specific first grade teacher for my daughter for next year, and to ask that my incoming kindergartner will have a teacher other than this one. I can't decide how much information I should share with him over what has transpired this week. Has anyone else experienced this kind of situation in school? I am so sorry for such a long post, I needed to get this anguish out of my heart! Thank you, Emily

Emily, Let me just say, it could have been me writing that post. We are in exactly the same boat and I share the same deep anguish as you do. My daughter, Grace, (yes her name is Grace too!) was diagnosed almost 2 years ago at the age of 5 with Celiac. Her kindergarten experience was "ok" because I was room mom and was in there 3 days a week and planned every single party and food that was there, BUT this past year her 1st grade experience was much like yours. Even though I was room mom again, parties were planned without my knowledge (it does happen). There seemed to be a food party every other day, or an ice cream party, or pizza. And I had Grace's gluten-free treats there like you, and her "emergency party" baggie available, but it was still announced the "everyone can eat the waffle bowls except for Grace", or something with gluten was offered to her. All of this after we met with the teacher (more than once) with all of the information on celiac you could ever want.

My daughter developed major school anxities and we ended up having to take her to a professional counselor. She hated school and would cry every morning about going, and every night just thinking about going. She felt safe at home with Mommy knowing what was gluten or not, and she didn't feel safe at school. Nor did she feel accepted by her peers and even her teacher. I have been communicating with the principal about having a teacher this yr who will be compassionate about her dietary restrictions and I pray this yr. will be better, or I will have to homeschool her. The look on her face when everyone else is eating oreos, pizza, or birthday cake like you said is devastating. I am so sorry you and your Grace are going through it too. I cannot believe her teacher wouldn't let her sit with you though, that is so wrong on MANY levels. I pray your Grace will have an awesome year for 1st grade and have an understanding and loving teacher to comfort her. I would share it all with you principal. It sounds like you are good with words and not "tattling" but you are very calm and mature about the horrible situation. I think the way you worded it was great. You have to be your child's advocate and that principal should understand. YOU know what's best for your baby!

Unlike the majority of Celiacs, my girl was not underweight but in the 95th percentile on wt and ht before the diagnosis. which is one of the reasons for it taking so long to get the correct diagnosis.

She has been gluten-free since mid April and suddenly in the last 3 weeks has gained 4 lbs. This may be cause for a happy dance for most parents but I have been watching her diet for over a year now and am worried. She had a yearly checkup in June and lost a BMI point and that was good but now its probably back and up some.

It's summer she is swimming nearly everyday, riding her scooter etc.. Certainly getting more exercise than the previous months . Her diet is not great,but not horrible. She hates most vegetables but I force at least 2 servings a day into her, as well as 2 fruits. she loves her proteins and dairy/cheese. She gets snacks like all kids, and I have been playing with every homemade muffin/cookie recipe to include flax, fiber etc..

Usually she goes 2 hours without a snack and then wham, she wants to eat every 15 minute for like 2-3 hours. Is this normal ? I actually find myself yelling no more eating, take a break.

Sometime I can't seem to fill her up. Anyone else experience this voracious appetite at certain times of the day? It not always the same time of day either.

Does it level off?

Maureen

I don't know if the crazy appetite levels off, but I'd like to know! My 7 year old daughter eats ALL the time and is tiny. Well she is actually very tall, but is all muscle and bone. ?? (I do not have celiac but went gluten free in support of her and have gained weight!! Not fair.) But she is always hungry too so I see it is something to do with the celiac.

After reading your post again, I am sorry I didn't answer your questions in my last reply to you! We were only allowed in the prep area like I said, not to the room where our child was put to sleep. Then we waited in the waiting room (which seemed like HOURS! but it wasn't). The Dr. came out to report to us immediately afterwards, showing us pictures of her insides and confirming the celiac. Then we were allowed to go back where she had already awoken. I do wish we had been back there BEFORE she awoke, I know she was scared. But a nurse is with them monitoring them all of the time of course. And you ask what I did to help my anxiety in the days before the procedure (and I had some MAJOR anxiety!!) I prayed and prayed for peace and strength. I needed to concentrate on being positive about it all in front of my daughter, which is hard to do when you are falling apart on the inside yourself. But God gives you strength!

My daughter was 5 when she had her endoscopy/biopsies done (2 yrs. ago) and it was so much harder on me than her in preparation. Because going back onto gluten right after we were told to take her off gluten, I thought she'd be so sick again, but she wasn't! So I kinda had high hopes that she had been misdiagnosed with her bloodwork (...not so.) BUT, I had high anxiety like you and I just told my daughter that she would be asleep and feel nothing. Unfortunately, they rolled her away from me and her dad BEFORE she was asleep and THAT is what she remembers about the whole thing. Crying and reaching for us and us not being able to go back with her. But we were allowed back in the prep area with her. They gave her some "funny juice" which made her sleepy but not sleepy enough. I suggest you request to stay with your child until he is asleep if possible. But the waiting is very hard on parents, take some good books!! Just know your baby will be better off knowing and it will all be over in about an hour. My child felt fine afterwards, she did have some major crying as she awoke, we were told it was the medication side effect. But no other negative side effects at all. And the Dr. came out immediately and gave us the rsults, no waiting on that. Good luck Mom, it will all be ok. Just remember this is a good thing, to help his tummy and health improve.

Lisa, I know it has been years since you tested Danimals drinkable yogurts, but I was wondering if you could give me your opinion on the Strawberry Explosion flavor (or just any flavor in general if you don't have specifics on the strawberry) and if it was/still might be gluten-free? I have a 7 yr old daughter with Celiac who loves them, but is getting gluten somewhere and I am just trying to figure it out. I am 1 by 1 eliminating items from her diet, and I cannot get a straight answer from the company.

Did you by any chance test Light and Fit vanilla yogurt?

Do you by any chance know of a chapstick that is gluten-free? (besides Burts...she hates that taste)

Thanks for posting!

Cat.

My son was just diagnosed celiac disease less than a month ago and up to then his absolutely favorite food, and the only thing he would eat sometime for a week, is Danimals Banana Drinkable Yogurt (he will put up with the Vanilla only because it come sin the same package and that's sometime all that is left). I tried everything else out there that is officially gluten-free and he wouldn't drink any of the smoothies or yogurts. Since I am a professor and researcher I looked into getting an assay kit for gluten and I did get one that requires a lab to run it (centrifuge and all). There are home tests that are about $20 per test and this one is $10 per test which is not cheap, but for his yogurts I will do it. This test also goes all the way down to 5 ppm (the other home test is 200 ppm gluten).

With all of this introduction, I have checked now 3 batches of Danimals drinkable yogurt, banana and vanilla flavor, marked from plant 49-64 (I assume that's what that means in the top of the lid) and none of them have shown any gluten. The latest batch has a pull date of July 19. Dannon does not guarantee that these are gluten free so I will keep testing every 2-3 weeks as I get a new batch (4-5 boxes of 8) of the yogurt.

If anyone wants me to let them know the results each time, I would be happy to let you know. I am not going to be running tests on anything else (takes about an hour each test and costs $10 per test) so don't ask me to do that. There are probably contract labs that can do that if it's really necessary, but I'd be happy to keep anyone informed who wants to know about the yogurts that I have been testing.

Lisa Peppas