Experienced Mom Advice!

[GFSAHmom]

Hello,

does anyone have advice on Activities/camps/groups for Northeast Ohio Celiacs. Also, I need advice on how to send him for playdate in the future and how to send him to preschool this year. What mistakes have you learned from? ANY GOOD ADVICE PLEASE!!! thanks

My son was just diagnosed with Celiac Disease. his levels were >139 so he did not need a biopsy.

My son was a prefectly healthy, normal baby. He has always been alittle smaller since birth. But my husband and I are thinner people and so is the rest of our family (No history of celiac). Up until a week before my ds 2nd birthday, he had not been sick! then he got a nasty case of the CROUP and ear infection (September 2011). the cough went away with steriods but the appetite decreased and his energy level spiraled down as well. We went 2.5 months in and out of the dr. for constipation. They even did 2 ultrasounds to see if there was a block. nothing... so the dr. said, It's just a case of the constipation and put him on miralax. He continued to lose more weight and become unhealthy looking:( People were very worried! then the Croup came back again (december2011)!! I sat and cried to the nurse at the dr. office when i learned that even after all my efforts, my 2yr old was only 23.8lbs and not growing... She told the dr. and he came in and said we were going to do some testing. He took 4 stool samples for parasites, sceduled test for Cystic fibrosis, celiac disease, thyroid and what ever else he recommended. The Dr. called us at 630pm on a friday night and gave us the results. He said start gluten-free right away. In 4 days of gluten free our son gained 1.5 lbs. We got into the PED GI with childrens hosp the following wednesday. So far our son has gained weight, has energy, and you'd never gues anything was wrong! I asked to be tested for Celiac because i would like to know what side of the family it came from so the other children can be watched closely for signs. But they said my isnurance won't cover the test. Why Not? And -Casey in Ohio-

[StephanieL]

Will post more later but Welcome! You are welcome to my "kids not eating gluten" house any time here in NEO

[Mizzo]

Send him in with his own mat for snack time.

Ask the staff to insure hand washing before and after snack and lunch time . NOT just antibacterial wash that doesn't do anything.

No playdoh, crayola modeling clay or macaroni art. No licking stamps and envelopes.

Ask if they allow birthday (celebration) foods brought in and ask to be notified well in advance.

I am sure I am missing tons of things but am tired so hopefully you'll get lots of responses.

[Emily30]

When my kid goes on little trips with other kids, I always assign him to an older kid that will watch over him and make sure an adult gets asked before he eats or plays any activities.

I ask in advance what they will be do so I can send my own ice cream and cake. Send my own activities if necessary.

Another thing I do is as them not to make a big deal about what Caleb(my boy) can or cant do. I have had his Sunday School teacher say-now Caleb cant do _______ so nobody is going to. Caleb is so embarrassed and feels like the other kids will be upset with him.

[Juliebove]

My daughter has food allergies. For play dates I would send her with her own snack and drink. I would sometimes send enough for the other kids in the house when I knew that the family was struggling financinally. I would tell the parent that she could only eat and drink what I sent and could not come in contact with wheat, including Play Doh.

[Avalon451]

So glad to hear you got to the bottom of your little boy's scary episode. I understand that some kind of trauma like illness can trigger the celiac gene. So maybe that's why it started with the croup. My worst symptoms were triggered with a stomach flu I had over 7 years ago.

What, your insurance won't cover your blood test panel for celiac? that can't be right. Did you ask through your regular doctor's office? They are the ones who should be running that-- then if you or your husband comes up positive, they would refer you to a GI doc. Hope you get it figured out. Everything I've read suggests that it is important for first degree relatives to be tested, once anybody has been diagnosed. So parents, siblings or kids of anybody diagnosed. (if only I could get my mom and my siblings to test!)

[mommida]

Pre-school and school will let you put an emergency birthday cupcake, ice cream, cookie in the staff room freezer. Clearly mark the containers. my kids are very leary of 'safe' food given to them. Put something there as a sure sign it is from home. The teachers know some parents just show up with a birthday treat. (i.e. celebrating a 1/2 birthday when the child has a summer birthday, birthdays that are during holiday breaks from school)

If you have the extra cash/time, find out about replacing the usual gluten playdough/cereal rings/ macaroni with gluten free options. Volunteer in the classroom. Make sure those kids are washing their hands. Pre-schoolers usually have snack mats that are all stored in the same container. you might have to train your child to wipe down the mat before each use.

Kids hate to be singled out because of a special diet. Please let the teacher know to keep it simple. Not a big deal. You might be surprised that the kids will opt to bring in something gluten free 'safe" for your child to eat. (My son was treated like a king with girls bringing him Hershey bars, skittles and things they noticed he could have.)

That's all I can think of right now.

[GFSAHmom]

Thank you for all this great advice! We are meeting with the preschool teacher next week. Since it's a private school, they have early signup. He'll be doing his first year with my neice who will be 4. Her mom is going to teach her about cale's allergy to help keep an eye on him. She also considering puting her on gluten-free diet. I plan on being involved and making playdough for the whole class.

When I talk to the teacher/principal i will ask about all the lesson plans and activities they do. I'm also going to send out a note to each parent in the class kindly asking them to let me or the teacher know when there will be a birthday celebration/special snack. Thanks again for the awesome advice! Keep it coming.

[StephanieL]

I'm also going to send out a note to each parent in the class kindly asking them to let me or the teacher know when there will be a birthday celebration/special snack. Thanks again for the awesome advice! Keep it coming.

Many times, the school prefer all correspondence go through them. I have found that parents respond better if the instructions come from the school, not "just" another parent.

We keep a snack bucket in DS's class. It's there for whenever there are surprise parties and all. He's 5 and doesn't care (yet) if his treat is "the same" just that he has one. I know that'll change but for now it works fine.

We also have a STRICT NO FOOD OR DRINK BUT WHAT WE SEND rule! This way there is no question at all about "well is this okay?". It takes away all guess work for the staff.

Making play-doh is a great idea but remember that they often use "tools" to cut and shape it. If those were used in the past for regular play-doh, they will contaminate your gluten-free play-doh. So be sure they are cleaned or new.

Lots of great suggestions!

[GFSAHmom]

stephanieL, I'll ask the teacher if they use tools. If they do, then maybe I'll have to get Cale his own. And yes i agree that the parents will do better if i go through the school. I was going to ask the teacher to send our a letter if she think's it's best. I got that suggestion off of a gluten free mom site Great idea for the snack bucket! I dont think Cale will mind if he has a different snack. Cale and his cousin can have the same gluten-free snack I can make some cookies and have the school keep them in the freezer. It all depends on what the teacher says.

[Cara in Boston]

My son is very sensitive, even to the smallest amounts of gluten. We got him some foldable placemats to bring to school in his lunchbox. (Snack-n-wrap? something like that) The school wipes down the tables in between classes, but I've watched them do it and I'm sure they are just spreading the crumbs around (the cloth they use can't be gluten-free after wiping down 100s of tables) The school tries, but I don't really rely on them to do it all correctly. We also have a "Call Mom" policy whenever there is a question about something.

I keep back up snacks and treats there, along with gluten-free cupcakes in the freezer in case there is a birthday party (Whole Foods sells them in packs of 4 in the freezer department). I would hate to get a call in the morning and not be able to bring something in at the last minute. I also keep a complete, shelf-stable lunch packed at school for emergencies (lunch left on bus, thermos opened and soaked lunch, etc.) He has had to use it once. (Crackers, hummus packet, applesauce cup, etc.)

He got "glutened" at a summer tennis program when another parent brought in some crackers. My son told the instructor that he could only have them if they were gluten free so she checked the ingredients and didn't find "gluten" listed so she told him they were safe. He trusted her so he ate them. The ingredients clearly said "wheat", but she didn't know that wheat was gluten. He is now 7 and can check most labels himself. He knows, "When in doubt, leave it out." and he knows to not trust other grown-ups, even though they try, the may not know all the details.

I always pack his snack for playdates. Even people who know about gluten may not think about things like how their peanut-butter is probably contaminated with crumbs, so even though it is technically gluten free, it is not safe.

I bought a "Ms. Bento" lunch kit and it is WONDERFUL for bringing meals with us. Keeps a full meal hot (or cold) for hours and it is pretty sleek so you can unpack it without bringing a lot of attention to yourself.

[Guest flowermom6117]

I know this will sound funny because your child is so young, but teach your child. My 4 yr old has picked up so quick on he can and cannot haves it surprises me. It may be easier for her because everyhing is a no more because of corn being an ingredient the gluten. A big one to teach your child is to not touch or eat a class mates lunch. There are a lot of kids in the lunch room and the teachers cannot see everyone. My daughter was glutened fron piking up animal shaped cookies to play with them and then went back to eating her own lunch without washing her hands.