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I am going in front of a panel tomorrow with my mom to get a 504 plan. We are trying to find info that explains celiac disease in an understandable way because the panel will not have any medical professionals, so we don't want to scare them! :P Also, part of the reason we are getting the 504 is because when I get glutened, I get sick for a few days with brain fog, GI stuff, etc. I was wondering if anyone knows of any website that talks about how getting glutened makes a diagnosed Celiac feel. Does that make sense?

The reason I posted here is because I figured parents who have gotten 504's before, may have info?!

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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I don't have time to find the info right now. But here is what I would do. Search this site and the web. Get bullet points.

  • Keep info brief and grouped into bullets so they can scan the page to get info rather than reading tons of info.
    1 in 133 have the disease. Last I heard 1 in 4500 get a diagnosis in the US.
    List the items that gluten is found in - all forms of wheat, rye, barley, and oats.
    List the various reactions - bloat, diarrhea, gas, skin sensitivity, DH rash, brain fog, etc.
    List the symptoms that you typically get and how they will affect your ability to be in school, in a class, or taking a test. List what you do to avoid gluten and contamination. Show that you are not going to get gluten because you have a biology test on Monday and didn't studyt enough over the weekend.
    List what you need the school to do.
    List what you will be doing. Specifically address mid-terms and finals.

What I have found that works is to give teachers a page or two first with brief info. Then as they ask questions you can give them additional pages that relate to their questions. That way they don't get handed a packet of 20 pages and shut down right away.

Good luck. Please post how this whole process goes for you. I have looked into a 504 for my child with a nut allergy bbut I have not had to implement it yet. Not sure if that is good or bad right now. And the younger one will require a 504 between the celiacs and food allergies.

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Hi again Kassandra! I have been thinking about your meeting coming up. Hope it goes well. Here is a link someone told me about that had letters that I could print off for teachers, cafeteria workers, principal, etc. I did use it and just made a few changes. I think it did help some although I think some of the teachers have already forgotten the information. One teacher asked my daughter if she was done with the diet yet. Yikes! I can see that she needs to reread the info.

http://www.csaceliacs.org/CelKidsSchool.php

Hope it helps. Let me know how it all turns out.

Virgie

son 18 UC/EE & IBS, daughter 13 Celiac

I am going in front of a panel tomorrow with my mom to get a 504 plan. We are trying to find info that explains celiac disease in an understandable way because the panel will not have any medical professionals, so we don't want to scare them! :P Also, part of the reason we are getting the 504 is because when I get glutened, I get sick for a few days with brain fog, GI stuff, etc. I was wondering if anyone knows of any website that talks about how getting glutened makes a diagnosed Celiac feel. Does that make sense?

The reason I posted here is because I figured parents who have gotten 504's before, may have info?!

Kassandra

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