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

Going Gluten Free Without A Diagnosis

Nic

Recommended Posts

Nic Collaborator
Nic
Posted

Hi, I believe my youngest son is having trouble with gluten. In the past he has come up negative on blood work for Celilac (his brother, grandfather, aunt, and some cousins have it). So I think I am going to try the diet and see how it goes. My concern is that my oldest son has a celiac diagnosis and I have had no trouble with the school cooperating. I am worried that with the younger son we may run into problems if he doesn't have a paper saying he is celiac or gluten intolerant from a doctor. Has anyone had such problems?

Nicole

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

Celiac.com Sponsor (A8-M):


shayesmom Rookie
shayesmom
Posted
Hi, I believe my youngest son is having trouble with gluten. In the past he has come up negative on blood work for Celilac (his brother, grandfather, aunt, and some cousins have it). So I think I am going to try the diet and see how it goes. My concern is that my oldest son has a celiac diagnosis and I have had no trouble with the school cooperating. I am worried that with the younger son we may run into problems if he doesn't have a paper saying he is celiac or gluten intolerant from a doctor. Has anyone had such problems?

Nicole

I currently send my dd to pre-school without a formal diagnosis. Plus, she has to avoid all dairy, soy, eggs and many food colorings right along with gluten as she's got other food allergies/intolerances as well. All we have is a note from our doctor stating that she has problems with all those foods. We get it at her yearly physical....and the school helps her maintain her diet (as far as not eating things she shouldn't be).

Truly, this shouldn't be a problem at all if you work at it with your doctors. If you trial the diet and see a lot of improvment, THAT should be the entire point behind a diagnosis. And if you explain what you're doing to your son's doctor before, during and after the trial...chances are he/she will happily give you all the help you need in dealing with the school. I gave our doctor a laundry list of symptoms and took dd in for regular weight checks (every 2 weeks) when we started down this road. There was absolutely no question that she improved on the gluten-free diet in my mind or in any of her doctors' minds. Plus, I've been told that the dietary response, coupled with other family members being diagnosed and then a gene test would be enough to carry a formal diagnosis. It sounds to me like you have much of this already in place.

The only real problem I can foresee in not having the diagnosis is when it comes to 504 plans. From what I've been told, you need a diagnosis to be able to use a 504. I could be wrong on this though. And you may not need this at all in order to keep your ds safe at school. Besides, it sounds as if you have some great experience already with your first son. Any chance they'll have been at the same schools and perhaps even share some of the same teachers?

JennyC Enthusiast
JennyC
Posted

I think that as long as you have a good doctor on your side you will be fine. I don't know if my son has an "official" diagnosis, but his doctors will be more than happy to help me write up a 504 plan. I doubt the school is going to ask to see biopsy photos. As long as a doctor requests one, you should be ok.

debbie-doodles Contributor
debbie-doodles
Posted

Hi, my daughter has been gluten free for 3 years now..but is now starting kindergarten. What is a 504? and do I need to get it so her school helps her? I'm confused! Who should I get the note from..her PCP, or her gastro? Thanks!

taweavmo3 Enthusiast
taweavmo3
Posted

I have had my 8 year old gluten/casein free for two years, and so far I haven't had any issues with the school. We had the option at one point to let the school make special accomodations for him in the lunchline, and that did require a physcian's letter. But he brings his lunch each day anyway, so it hasn't been a problem. I just talk to his teacher's at the beginning of the year, and provide a big bag of safe treats for any occasion that may pop up. It's much easier with him, since he's in 3rd grade and they don't do alot with food anymore. It's the younger grades that are a bugger, b/c they do SO much with food. We are having major problems with my daughter's kindergarten teachers giving her gluten...and we have all the safeguards in place. But no one has ever questioned or asked to see proof of her diagnosis.

With that being said though, we are getting letters from the principle regarding the numbers of days that my dd has missed. The two weeks she was absent quite a bit was because two different teachers gave her gluten, which really rubs me the wrong way, lol. So, in this instance I'm sure we are going to have to show something from the doctor to prove she does have Celiac. But like the previous poster said, document dietary response, and with family history, you should be able to get a doctor to at least dx gluten intolerance in case you need it at some point.

cruelshoes Enthusiast
cruelshoes
Posted
Hi, my daughter has been gluten free for 3 years now..but is now starting kindergarten. What is a 504? and do I need to get it so her school helps her? I'm confused! Who should I get the note from..her PCP, or her gastro? Thanks!

Open Original Shared Link

What Is Section 504?

As part of the Rehabilitation Act of 1973, Congress passed Section 504, a civil rights law to protect people with disabilities by eliminating barriers and allowing full participation in areas such as education and the workplace. Since then, the Office for Civil Rights has developed federal regulations that help to explain this law.

While the law doesn't provide any new funding for programs and agencies that comply, it carries the threat of withholding federal funds from those that don't. Since public schools receive federal tax dollars, the law applies to them. It doesn't apply to many private schools because they don't receive any money from the federal government.

Celiac is considered a disability under the Rehabilitation act of 1973. If you decide you want to go for a 504, the process will vary by school district. Some will have you contact the school directly, while some will require you to begin the process with the district Special Ed office. You should be able to ask in your school office what the process is.

For us to get a 504 plan, we were required to have a diagnosis. Our school district was completely unwilling to work with us without it. Now that we have a 504, we have a gluten free school lunch provided (at no extra cost than a regular lunch) once a week, and we have accomodations to the classroom environment to keep my son safe. For us, the only way to do that was with a diagnosis. Maybe other school districts would be willing to work without one, but that was how it worked in our case.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Churley
      - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    4. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    5. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,344
    • Most Online (within 30 mins)
      7,748
    Scottweath
    Newest Member
    Scottweath
    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

    • Churley
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Churley · Posted

      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
×
×
  • 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.