Why is a GF/CF diet not taken seriously?

Written by: Alicia

I am going to let some steam off today. I am so upset that yesterday my daughter's food allergy was ignored at school. All of my GF/CF Moms can most likely relate to this.

I picked my daughter up from pre-school and noticed she had some red stains on her shirt. A teacher's aide told me they gave them Popsicles that day. I felt my chest tighten up immediately with anger. I have explained over and over to the teacher and the aides that my daughter has a gluten allergy. I have specifically mentioned that most Popsicles contain gluten. I have also explained she is not allowed to have any red dye (she gets more agitated with this in her diet).

So, what do they do? They ignore my request and gave her a RED Popsicle. I asked the teacher, "Why did you do that? You know she has an allergy. You should have told me and I would have brought in a treat for her." The teacher said, "We weren't going to give it to her but she looked so sad when she couldn't have one." What kind of answer is this? If she had a peanut allergy, would you have done the same? Why is a GF/CF diet not taken seriously?

I wanted to lose it but I know myself well enough to hold back and relax before I go off. It took me about 7 hours before I could send this "nice" email off to the teacher:

Dear "Teacher:"

I am writing to let you know I am concerned that my daughter's diet was not followed today.

I understand it is hard to not give her the same sweets most kids can eat. I wish she could eat anything she wants...but she can't. She has a severe allergy to gluten. It is not like a peanut allergy and you most likely won't see an instant reaction but damage is occurring internally.

Celiac is a disease that runs in my family. If you have an allergy to gluten and you eat gluten it will travel to your small intestines and cause damage. Let me briefly explain so you will have a clearer understanding of this disease. We all have villi in our intestines. When food passes over them, they absorb the nutrients from that food. However, if you have a gluten allergy and then eat gluten it will travel to your intestines and flatten the villi. This means none of the nutrients from the food you eat will get absorb. This is why she is shorter than her triplet siblings. She was not getting the right nutrition for over one year.

Madelyn also has another reaction to gluten. If gluten and casein (a protein in milk) gets into her blood stream, it can have an opiate-like effect on her. Basically, we lose her to a drugged out stare. Celiac disease has been linked to some psychological disorders (OCD being one of them; which she has on a gluten diet). Gluten can cause malfunctions of the brain and neural networks for people with this allergy. Taking this out of her diet is the sole reason why she is no longer considered autistic. It is very important for her to not eat gluten.

In the beginning stages of this diet change we slipped up a few times. These slip ups took one to two days for her body to correct itself. During that time she had more tantrums (including pulling her hair out), got rashes on her bottom, OCD behaviors returned, woke frequently during the night and was just more agitated.

It is hard with her on the diet because a lot of people don't understand it. Some people think it is a diet strictly for autistic kids (and some do not take it very seriously). But, for many members of my family this is a serious issue. This allergy is a true disease. My dad has been suffering for years. His body took major hits from not absorbing nutrients for years and years. Some of his organs were badly affected.

Although a few slip ups here and there will not cause any long term damage it does cause brief damage. I really need her diet restrictions to be followed. Lets please go back to our original plan of her not eating any food unless I give it to you.

I have to admit I am a little concerned now to have her attend school. Can you assure me her diet will be followed 100% of the time? She cannot have any gluten or red dye #40.

Sincerely,
Alicia

I have not heard anything back yet. You know what hurts the most? It is that I have repetitively told the staff of her food allergy. I bring in food and drinks that Madelyn can consume. What more can I do; besides pull her out of school which I don't want to do. I feel like they disrespected my little girl. They did not take her allergy as a true issue. This was NOT their decision to make. I had to deal with OCD behaviors yesterday. She had one blow up at the pool yesterday because she didn't like how I put the toys into the pool (I haven't seen this type of behavior since the last slip up).

What more can we, GF/CF Moms, do to be taken seriously? My husband was so upset that he wants to pull our daughter out of school. I said we can't do this because she needs the social interaction to help her Selective Mustim. I feel that the teacher cares for my daughter and am still in shock over her poor judgement.

I'm going to go cool off again. Have a good weekend everyone! - Alicia

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