Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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
      131,199
    • Most Online (within 30 mins)
      7,748

    Stacy M
    Newest Member
    Stacy M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...