Gillian was diagnosed with Celiac Disease in June of 2007, and we immediately approached our school to get help. We met with the nurse and principal, and was assured that her needs would be met with an IHP (Individualized Health Care Plan) and did what they asked… got letters from her doctors, and met with the people in the cafeteria. We asked about doing a 504 plan, which would give her rights under the “Americans with Disabilities Act”. Either one is a legal document.

There are no other children in our district with Celiac Disease at this time. The number of people who are being diagnosed daily is incredible, and as children with digestive problems see their doctors, many, many more will find out they have it. We’re the ones who need to set the parameters of the children to come. We were told that we would come up against a lot of resistance. They were right.

The women in the cafeteria spoke to me, and there was very little that Gillian could eat. They told me that they’d be in touch with the principal, and he’d get back to me. He didn’t. Somewhere along the line, the ball got dropped, and I didn’t follow up because the nurse and I seemed to have things handled. I’d email the teacher, the nurse would discuss everything with her, and we’d help the homeroom teacher with the class parties. It wasn’t until this year, when the teacher didn’t answer my emails, that I realized there was no protocol in place for her, and that we needed to act.

We had immediate problems at this point from the principal and the teacher. I got the distinct feeling that they were telling me they were working on an IHP for her, but were going to try to put it off until the end of the year when she’d be leaving 4th grade and entering another school…if we chose to fight for a 504 plan, it could be very expensive for the district, and they would most likely fight it – although the Americans with Disabilities Act was amended in 2008, making it much easier on us if we chose to follow through with pushing for a 504.

Anyway, enough of the technical part. When it came down to it, I felt that we needed to give a push, so I sent out this email today – to the supervising nurse of the district, the supervisor of k-4 education in the district, the superintendent of our district, and the principal and nurse.

Here’s the letter. I made every attempt to be courteous and respectful, and not make an enemy of the principal. I hope it works. I’m pretty sure we’ll get a response rather quickly now:)

I’ve taken out the names for obvious reasons. I checked over it at least 3 times. If you see any names, please let me know:)

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Hello, all;

I have everyone included in this email except for Dr. [school physician]. He does not appear to have email that is public, so we will fax this information to him tomorrow. If one of you can forward this email to him, please let us know and we won’t fax, to avoid redundancy.

I understand that Mr. [principal] is working to take care of this issue…It occurred to us that you everyone involved could use a more detailed description of her needs. This is a list as it stands right now, and at this point should be considered incomplete. This list may need to be augmented in the future.

Due to communication errors (partially on our part), these legal documents have not been filed, and the issue not resolved since Gillian was diagnosed in June of 2007.

Please understand that one part per million (a tiny crumb) can kill or damage the lining of Gillian’s intestines, causing vomiting, diarrhea, cramping, and internal damage.  We were told in October of 2007 that Mr.[principal] and Dr.[school physician] confirmed that there were to be NO products containing gluten brought into the classroom, and that this was according to district policy. In the interest if making things easier for the whole class, my husband and I decided to keep only class parties gluten free. We are now questioning that decision, due to the difficulty in cooperation we are receiving from class parents and some teachers.

1. Access to wipes for her desk. Her desk needs to be wiped down before class begins, before and after snack, and when she returns from the lunch room. Gillian is capable of doing the wiping down, as long as her hands are washed immediately after.

2. Access to frequent hand washing. Antibacterial hand sanitizers are not helpful, because gluten is not a bacteria, and using it will not remove any gluten from her hands.

3. Gluten free food needs to be served at any and all class parties (unless it is deemed that classrooms be kept gluten free). I have attached letters from Gillian’s pediatrician and gastroenterologist supporting the medical and psychological needs for this.  I have provided extensive lists of easy-to-find common foods that can be served at these functions with little to no inconvenience to Gillian’s teachers, which have not been passed on to the classroom parents. I have also offered to supply gluten-free banana bread or birthday cake at my own expense for birthday parties.

4. All students need to wash their hands before these parties. This will lower the risk of cross-contamination.

5. A letter sent home (immediately) to all the parents of the children in Gillian’s class, stating the issue and that all class parties (or classrooms) will be gluten free. This letter needs to be sent home at the beginning of each school year.

6. No class projects done inside the classroom with gluten that can become airborne – IE flour in a volcano made in class. This can create a dust on the desks, which can easily cause contamination and be ingested by Gillian.

7. Food, at the appropriate times (snack and lunch), need to be accessible for Gillian. The classroom punishment of taking her snack away if she misbehaves needs to be substituted with something else. Gillian needs every calorie she can get.

8. The villi in Gillian’s intestines were completely decimated before she was changed to a gluten-free diet. She had stopped growing completely. Her body is still healing internally, and will often experience intestinal distress. She needs access to the nurses’ office as often as she deems necessary.

Mr. [principal] asked me to visit the cafeteria and speak with the women who worked behind the line to see what the options were at the time. Basically, the only things she could eat was fresh fruit with a skin, and cold milk. The women told me that they would contact Mr. [principal] and that he would contact me, and the line of communication was dropped at some point. I take partial responsibility because I didn’t follow up on this at the time.

9. Every child is entitled to the option of buying a hot lunch at school.  Gillian needs to have that option. We are willing to work a month ahead of time with the employees in the kitchen to choose days where Gillian will buy lunch.

10. Accommodations will need to be made to keep a sterile area in the lunchroom on the days that Gillian will buy lunch. We are open to gluten-free pre-made lunches being brought in by outside companies to accommodate this need. If this route is chosen, there will need to be a safe way for the food to be re-heated or kept warm.

11. The school nurse, class teacher, and cafeteria staff in any school Gillian attends needs to be educated about Celiac Disease and protocol necessary to keep her safe and uncontaminated.

Information on 504 plan from The National Organization for Celiac Awareness:

“Section 504 is part of the Rehabilitation Act of 1973, and applies to all institutions receiving federal

financial assistance, such as public schools. Under this law, public schools must provide a free

appropriate public education and not discriminate against disabled students.

This law acknowledges that the disability may not require special education services but a plan is

needed to ensure the student receives an appropriate education accommodating the disability within

the classroom. This law must accommodate a special diet, including the gluten-free diet which is

the only known treatment for celiac disease.”

I hope you find this helpful, and when you need more information, I’ll be happy to provide it!

Please advise us as to when there will be a meeting regarding this issue, and we will attend. We appreciate your understanding our sense of urgency

Thank you in advance for your help,

Fae