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Going Gluten Free Without A Diagnosis


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#1 Nic

 
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Posted 24 February 2008 - 03:13 AM

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
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#2 shayesmom

 
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Posted 24 February 2008 - 04:53 AM

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?
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Vicky

#3 JennyC

 
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Posted 24 February 2008 - 06:57 AM

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.
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Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.
Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

#4 debbie_doodles

 
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Posted 27 February 2008 - 10:20 AM

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!
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#5 taweavmo3

 
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Posted 27 February 2008 - 08:01 PM

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.
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Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis
Age 8- dx'd Celiac March 2005
Age 6- gluten-free/cf, allergy related seizures
Age 4 - reflux, resolved with gluten-free/cf

#6 cruelshoes

 
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    We've heard nothing at all about the growing tomato menace..

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Posted 27 February 2008 - 09:18 PM

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!


http://www.schwablea...s.aspx?r=30&d=5

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.
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-Colleen
Dx 8/05 via bloodwork and biopsy (total villous atrophy)
13-year old son Dx 11/05 via bloodwork and biopsy
Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt




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