Feedback Needed--class Research; How Common In Large (7+) Families?

[momagn5]

I am doing some "research"--partly for myself and partly for a class I am taking. I'm hoping for some feedback.

There are a few questions I have in dealing with celiac disease:

1. How many of you had to deal with schools/teachers who do not know what celiac disease is or how to deal with it?

2. What procedures did you follow to help your child and the teacher have a successful year? (health/learning plan or 504?)

3. How supportive was your child's school?

4. Does anyone know of any "support" documentation that is readily available to teachers/school staff in dealing with celiac disease?

5. Was your child diagnosed with a learning disability that decreased after being on a gluten-free diet?

6. Before diagnosis, was your child's behavior affected by treats/rewards given by the teacher? If so, how?

7. What changes did your school make for your child?

8. What would you like school teachers to know about celiac disease?

Another question I have is for myself. I have 5 children, 4 diagnosed celiac disease. I just received notice that I also have it. I have not met any other families that have so many children positively identified as celiac disease (they are small families of 2-3; or only have 2-3 diagnosed). Is it "rare" for so many in one family to test positive? (My 2 1/2 yo son has yet to be tested, but I "think" I see similarities with his older siblings.--what are the odds he will test positive, too?!)

[lorka150]

hi there!

you might want to post this in the 'parents with kids...' thread - you'll probably get more response.

[chrissy]

i have 9 children----3 of them are diagnosed with celiac and we know that at least one of the others carries the gene. i worry some about my youngest as she has enamel hypoplasia---so far she tests negative. we are waiting for gene test results on the rest of us. i also have 2 step-children.

[bbuster]

1. We first learned that my son had Celiac in 5th grade. No one at the school was familiar with it (neither was I until we started down the diagnosis path a few months earlier).

2. I started with an e-mail to my son's teacher, the principal, asst. principal, special services coordinator, coach and school nurse. I explained a bit about the symptoms, foods, etc. and told them they could give out this information to anyone who inquired (other teachers, parents, etc.) Several of them researched it right away.

His teacher called me at home that evening to learn more and ask how she could help. I sent e-mail links to csaceliacs.org and celiac.com and gflinks.com. I also printed out some materials that I found on these and other sites. No 504 was brought up.

3. The school was very supportive - no issues with that. As he started 6th and then 7th grade, I sent the same e-mail to his new teachers and in each case they called me at home right away to discuss.

4. Don't remember where I got my specific information, but it was all on-line.

5. Interesting. My son is in no way learning disabled. He is very bright and has won awards in math, spelling, and english. However, when he was VERY young he was doing phenomenal things such as spelling "elephant, zebra, giraffe, Christopher Robin" at age 3 1/2, reading at 4, and at age 5 he had memorized birthdays of over 150 family and friends and could add five 2-digit numbers in his head. While he does well in school now, he is a little short of gifted status and I wonder if Celiac didn't cause some of that. One thing he is very poor at is understanding and following directions, and I read some of the posts about "brain fog" and think - "that's him!"

6. Looked forward to treats like most people.

7. a) All teachers have told him if he ever needs to go to the bathroom, just go - don't wait for a pass, etc. He is allowed to keep a stash of treats that he can choose from if someone brings in birthday

treats that he can't eat. Sometimes a teacher or parent will check with me in advance so they can bring something for him. Also, if there is a pizza party, they let me know so I can bring some for him.

c) We have made special arrangements for Communion (Catholic school)

8. In his case, I believe it's the cause of his small stature and I hope he will have a growth spurt anytime. They have a basic understanding of it. His younger sister even did a science fair project entitled 'Gluten or Not', comparing regular and gluten-free chocolate chip cookies, and won a prize!

Sorry so long - good luck with your research.

[Generic]

I was the one in school with celiac (I wsa diagnosed 19 years ago).

1. How many of you had to deal with schools/teachers who do not know what celiac disease is or how to deal with it?

No one had ever heard of it.

2. What procedures did you follow to help your child and the teacher have a successful year? (health/learning plan or 504?)

They decided at the time I didn't qualify for a 504 plan since it was diet controlled. (they also didn't know back then that it was an autoimmune disease).

3. How supportive was your child's school?

They were some what supportive. midway through the day i had to go to the nurse's office to eat a snack, since I wasn't absorbing real well yet, and had hypoglycemia issues. The class I would be late to made a big deal out of it and embarassed me. He eventually just had me eat in his class.

4. Does anyone know of any "support" documentation that is readily available to teachers/school staff in dealing with celiac disease?

No not really, maybe check with GIG of North America?

5. Was your child diagnosed with a learning disability that decreased after being on a gluten-free diet?

Nope.

6. Before diagnosis, was your child's behavior affected by treats/rewards given by the teacher? If so, how?

Nope.

7. What changes did your school make for your child?

None that I am aware of.

8. What would you like school teachers to know about celiac disease?

Just have an understanding about it.

Another question I have is for myself. I have 5 children, 4 diagnosed celiac disease. I just received notice that I also have it. I have not met any other families that have so many children positively identified as celiac disease (they are small families of 2-3; or only have 2-3 diagnosed). Is it "rare" for so many in one family to test positive? (My 2 1/2 yo son has yet to be tested, but I "think" I see similarities with his older siblings.--what are the odds he will test positive, too?!)

[momagn5]

I am doing some "research" for a college class. The focus is on celiac disease in schools. I am hoping for some feedback that I may use as "data" for my project. Please take a moment to share your experiences in answering the 9 questions below. (Thanks, in advance, for taking the time to answer the questions!)

1. Have you had to deal with schools/teachers who do not know what celiac disease is or how to deal with it? Please include a time frame (year) and child's grade level at the time.

2. What procedures did you follow to help your child and the teacher have a successful year? (Example: Health/learning plan or 504?)

3. How supportive and knowledgeable was your child's school initially?

4. Does anyone know of any "support" documentation that is readily available to teachers/school staff in dealing with celiac disease?

5. Was your child diagnosed with a learning disability or behavior problem prior to diagnosis?

6. If your child was diagnosed with a learning or behavior problem in school, was there an improvement after going gluten-free?

7. Before diagnosis, was your child's behavior affected by treats/rewards given by the teacher (usually blamed on the amount of sugar ingested)? If so, how did your child's behavior change?

8. What changes did your school make for your child?

9. What would you like school teachers to know about celiac disease?

Thanks, again, in advance to anyone who responds.

[momagn5]

Thanks for the referral. I added it to that area, too. I didn't realize there were so many to explore!!

I have to come back more often.