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Is Gluten Challenge Worth It To Get Diagnosis For School?

Chakra2

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Chakra2 Contributor
Chakra2
Posted

Here's a question for moms of school-aged kids:

Without knowing anything about celiac disease, in January I took my 2 year

old (and myself) off gluten, dairy, soy and a few other things to

try to fix his nightwaking, eczema and diarrhea. Both of us got

great results on the diet, and the more I read about celiac the more

I thought it matched up with the variety of health issues I've had and

my relatives have had.

Now I'm trying to decide whether or not to do a gluten challenge with

my son to work on an official diagnosis. Right now it doesn't seem

worth it -- I control his food choices, eating gluten-free/DF/SF hasn't been that big

a deal, he's growing, happy, and 95% symptom-free.

But I did wonder about the value of an official diagnosis for school, or

even just for helping family and friends take the diet seriously on

down the line.

Could some of you let me know your experiences with having or not

having an official diagnosis for your kids? Does a diagnosis matter more

as kids get older?

And as a 2nd issue -- any thoughts on a good age for a gluten challenge?

Thanks!

Chakra2

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RoseTapper Newbie
RoseTapper
Posted

To be frank, I personally feel that gluten challenges are very dangerous to one's health. No matter what the reason (school or to prove something to an insurance company), I don't think it's worth the damage that can potentially be done by a challenge. Once you've chosen a gluten-free lifestyle, your body can react quite badly to the sudden introduction of gluten if you have celiac. To give you an example, after I'd been on a gluten-free diet for two years, I inadvertently ingested gluten. The result was that I had to receive iron intravenously for the next two years due to the damage to my intestinal lining. I was very, very careful afterward, but then I inadvertently ingested gluten about four months ago. Two months later, both of my feet suffered multiple stress fractures--just from standing! Apparently, I'm now having trouble absorbing calcium.

I can understand why you would want "proof," but when it comes right down to it, what's more important: your child's (and your) health...or ??

dilettantesteph Collaborator
dilettantesteph
Posted

My son was diagnosed at age 10 by response to diet. His doctor sends notes to the school based on this and they comply. He didn't need a gluten challenge/biopsy.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

I would not do the challenge if it were my son. And as for "proof," with all of the health care changes and insurance issues, I would avoid it with a ten foot pole. If he's thriving on a gluten-free diet, stay with it. Neither of my son's schools ever asked for any proof of his diagnosis. If you aren't insisting the cafeteria feed him I would see no reason they need anything, and I would never have him eat the cafeteria food so for us it wouldn't matter.

If you do decide to do it, I would do it as soon as possible. From what I've read the longer you're off gluten the harder the symptoms can be if glutened. But again, I would never, could never, absolutely would not gluten my kiddo just to prove to someone he gets sick from it. No way!

Chakra2 Contributor
Chakra2
Posted
  • Author

Thank you for the responses. They are giving me a lot to think about.

His pediatrician has suggested a gluten challenge but the idea does seem

illogical to me. Hope hubby and I can agree on what to do!

polarbearscooby Explorer
polarbearscooby
Posted

I've been wondering the same thing, my Doctor just diagnosed me based on my symptoms and such and never did any blood work, or a biopsy...And the more I've read things on this site about 'official' diagnosis I wonder if later on down the road I might need one? I can't imagine going back on gluten whenever I get glutened now the pain is unbearable.... So for right now I've decided to stick with the Doctor's diagnosis and the diet :)

T.H. Community Regular
T.H.
Posted

You could always save up and pay for a prometheus test for the celiac gene later, too. He doesn't need to go on a gluten challenge for it to work, and with a positive gene plus his response to a gluten free diet, I'm sure you would be able to find a doctor somewhere - might be a different one than now - who would give him a positive diagnosis from that. :)

Thank you for the responses. They are giving me a lot to think about.

His pediatrician has suggested a gluten challenge but the idea does seem

illogical to me. Hope hubby and I can agree on what to do!

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scarlett77 Apprentice
scarlett77
Posted

It is funny that you ask this as I myself am struggling with a similar situation. I really appreciate the responses since they are completely in line with my logic. My oldest son went through the blood work and endoscopy and got a diagnosis. At the time though we weren't entirely sure what the problem was. Our household went gluten-free which includes my youngest son. I'm getting pressure from my Pediatrician and GI to get my youngest tested after 18 months. I don't think it is necessary if we already eat gluten-free. I don't really want to put another child through a challenge let alone an endoscopy.

kbtoyssni Contributor
kbtoyssni
Posted

You could keep looking around for a doctor who will write you a diagnosis based on dietary response so you don't have to do a challenge. That's probably safer than purposely feeding the kiddo gluten.

ravenwoodglass Mentor
ravenwoodglass
Posted

You could always save up and pay for a prometheus test for the celiac gene later, too. He doesn't need to go on a gluten challenge for it to work, and with a positive gene plus his response to a gluten free diet, I'm sure you would be able to find a doctor somewhere - might be a different one than now - who would give him a positive diagnosis from that. :)

The only problem with doing the gene tests is that if he happens to have one of the celiac related genes other than DQ2 or DQ8 you most likely be told that he is not celiac. We had that happen to my DD after she was positive with both blood and biopsy. As a college student she was overjoyed to go back to gluten and now considers all her symptoms to be stress related.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

The only problem with doing the gene tests is that if he happens to have one of the celiac related genes other than DQ2 or DQ8 you most likely be told that he is not celiac. We had that happen to my DD after she was positive with both blood and biopsy. As a college student she was overjoyed to go back to gluten and now considers all her symptoms to be stress related.

Ravenwoodglass, so is your daughter now symptom free with negative blood tests?

ravenwoodglass Mentor
ravenwoodglass
Posted

Ravenwoodglass, so is your daughter now symptom free with negative blood tests?

No she is not symptom free. As far as I know she hasn't had any more testing as she has a high stress job now and she considers the gene test to be conclusive and any symptoms she has are attributed to stress. It breaks my heart but there is nothing I can do as she will not discuss any health related issues with me. She does discuss them with her brother though which is how I know she is still symptomatic.

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