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. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,689
    • Most Online (within 30 mins)
      7,748
    EndlessSummer
    Newest Member
    EndlessSummer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.