Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

504 Info


confusedks

Recommended Posts

confusedks Enthusiast

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

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.

buffettbride Enthusiast

Here is a really good example:

Open Original Shared Link

happygirl Collaborator

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

www.celiacdiseasecenter.columbia.edu

www.celiaccenter.org

Virgie Apprentice

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.

Open Original Shared Link

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

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.