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

Confirmed Dx And Schools?

justlovlie

Recommended Posts

justlovlie Rookie
justlovlie
Posted

Hi all,

My daughter will be starting kindergarten in the fall, and I'm wondering if we should attempt to get a firm diagnosis before then. I have heard that schools are less willing to make accommodations without it, but I don't really know what that means in practical terms.

Right now her diagnosis is 'presumed celiac' due to the fact that we were gluten-free prior to testing. Eliminating gluten made a very clear difference in her health, and her former GI did not want to do a gluten challenge at the time (when she was 3) for fear that it could really hurt her uneccessarily.

Now she's a bit older, and we have moved and are on the hunt for a new GI. I have emailed the school nurse for guidance on the issue but haven't heard back yet. I will consider doing the challenge over the summer if there is value in it. In the meantime, she continues to react even to very small exposures such as cross contamination...the thought of loading her up on gluten has me shaking in my boots! What are your experiences with schools and having a firm dx vs just asking them to help her avoid gluten? We will be providing all of her food, and she is *usually* very good at self-policing what she eats. So I'm curous what the practical differences are.

Thanks!

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

Celiac.com Sponsor (A8-M):


MycasMommy Enthusiast
MycasMommy
Posted

You should be able to get a doctors note regarding it as medically needed. It Seems your Pediatrician may be willing to do that.  On a more practical level, you may want to ALWAYS pack her lunches and even with the note, personally speak to her teachers directly. if she is so sensitive.  JMHO

StephanieL Enthusiast
StephanieL
Posted

Schools will want a dx (medically needed I don't think is covered it needs to be an actual dx).  How you get that is up to you/your Dr. If they are willing to say "Celiac" based on what you are saying then you have a dx from the Dr.  You will need to follow the formal 504 request path and provide them with the necessary paperwork to determine eligibility.  It may seem simple and she may self police but there are many many situations you will find that come up that make dealing with school an issue.  There are class partied, school mates birthdays, playdoh, macaroni art projects and eating in the classrooms, tech labs, hands all over tech devices.  If she is that sensitive, I would think it is more than just "don't feed her" but you may have a different comfort level. I would not send my kid to school without a plan in place for his/her safety but admittedly our issues go beyond gluten. 

 

Hope that helps and good luck!   We're here for ya!

MycasMommy Enthusiast
MycasMommy
Posted

 How you get that is up to you/your Dr. If they are willing to say "Celiac" based on what you are saying then you have a dx from the Dr. 

Hope that helps and good luck!   We're here for ya!

That is what I was getting at.

justlovlie Rookie
justlovlie
Posted
  • Author

That is our issue...our old GI was not yet willing to say celiac for sure, yet she also didn't want to do the challenge. Her labs didn't indicate celiac since she was already gluten-free, but they were mildly poditive for wheat intolerance. We were in an awkward spot in that the GI said her symptoms were far more severe than she would expect for a "low level intolerance" and looked like celiac - but she wasn't willing to give her a lifelong diagnosis without the hard evidence. I certainly see her point in that a wheat intolerance often is 'outgrown'.

Hopefully a fresh set of eyes from a new GI now that we have moved will clear up this muddy mess! In the meantime, I've just been curious as to what the day to day differences are in public schools if she did have a confirmed diagnosis. Our preschool has been excellent about working with us, but that's in large part because they suffered with us through the massive, uncontrollable, and super foul diarrhea and behavioral issues when we were first figuring it out! We had no formal plan in place, but we all learned together how sensitive she is and how to mitigate that. Maybe we have been spoiled by their good care of her! It's because of this that I am assuming we can get by well enough without the official stuff - but obviously a large public school situation is going to be very different. I'm looking forward to seeing what the school nurse suggests.

BlessedMommy Rising Star
BlessedMommy
Posted

What were your lab results?

 

There are no blood tests for wheat intolerance, so if she was mildly positive, it is likely celiac.

justlovlie Rookie
justlovlie
Posted
  • Author

Hrm, that's interesting, I wasn't aware of that. I need to find her old labs...

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

Celiac.com Sponsor (A8-M):


kb27 Apprentice
kb27
Posted

It really depends on the school as to whether or not you need an official diagnosis. 

 

Our elementary school was willing to work with my son even without a letter from the doctor.  We had no problems with any teachers, from art to after-school care.  They were very accommodating.  We did not attempt to have him eat at the cafeteria.

 

Now he's in middle school.  There, I think the letter is more important.  He had to get a note from the doctor to get accommodations in the cafeteria.  And then we needed another note specifically relating to cooking class (because the first note just said he couldn't eat gluten).  

 

We did not get a 504 plan set up because the school seemed able to just work with a doctor's note.  

StephanieL Enthusiast
StephanieL
Posted

The thing with having a 504 is that it LEGALLY covers you AND the school.  I have heard many times about "they were accommodating till they weren't" and that's when the trouble starts :(  I am glad it is working for you!

Another thing people like having them for is when the kids get to college and need something bigger like permission to live not in a dorm in the freshman year because they need cooking facilities and stuff like that.  It's easier to get a 504 early in school.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,194
    • Most Online (within 30 mins)
      7,748
    rycarlson
    Newest Member
    rycarlson
    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

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...