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Is It Worth Seeing A Doc If Not On Gluten Normally?

brendab

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brendab Contributor
brendab
Posted

So I am almost convinced my 2 year old has a gluten intolerance if not Celiac and I would like the official diagnosis but I don't want him on gluten for weeks if it's a "maybe" or a negative altogether. He's only 2 and I took him off wheat at 4 months of age (he was exclusively breastfed so I was really the one off of wheat for his delayed allergies) and I suspect he had gluten issues when his siblings had something that they dropped or left on the table and he ate it but I never really put it together nor did I think gluten exposure. I did a trial of barley the other day as he's not tested positive for barley allergy, just so I could see if gluten bugged him and he had yellow, moth-ball smelling poop with a HUGE amount in the diaper and lots of undigested food. I'd say that was a definite reaction but that was the ONLY exposure I did on purpose, normally it's naturally avoided with him so the damage to his villi most likely won't be there and the blood test will probably be negative.

So what I am wonder is, if I take him to a Pediatric GI will I be wasting my time and co-pay? Will there be other testing they would do? What else should I expect?

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Jestgar Rising Star
Jestgar
Posted

I'm curious why you'd need an 'official' diagnosis?

brendab Contributor
brendab
Posted
  • Author

I'm curious why you'd need an 'official' diagnosis?

I'm hoping insurance will help pay for food at least and am hoping there are other benefits as well. I feel like I am lying if I say that my son and I have Celiac's if it's not been proved and diagnosed. I'm overly honest that way, is that lame? LOL

kareng Grand Master
kareng
Posted

Where I live, an official dx is needed to get official help in school. I think most teachers would help without it. I have heard on here that colleges require notes from doctors for gluten-free food in dorms. And even then, some of them won't honor that. I have used my official note from my doctor to take food in places that don't allow that normally. Some places we have just said "food allergy" and that is enough.

mario Explorer
mario
Posted

I'm hoping insurance will help pay for food at least and am hoping there are other benefits as well. I feel like I am lying if I say that my son and I have Celiac's if it's not been proved and diagnosed. I'm overly honest that way, is that lame? LOL

You did get an official diagnosis.... Yellow poop

brendab Contributor
brendab
Posted
  • Author

You did get an official diagnosis.... Yellow poop

Is yellow poop only reserved for Celiac's or do you think it may be another intestinal disorder/disease? I certainly would want it treated right, I guess I have to also remember the gluten that was given and yellow poop was the result. I am still learning :)

Looking for answers Contributor
Looking for answers
Posted

I don't think insurance will help cover food (hopefully someone will chime in if I'm wrong, but I've never heard of that). It's almost better not to have it on your medical record in my opinion. If you ever need private insurance, the diagnosis could be a problem. They approve insurance based on a point system. I had my sister look it up for me once (she's an insurance broker), and Celiac diagnosis set me over my point limit - meaning I am unisurable in the private realm. Thank god for group benefits! :blink:

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brendab Contributor
brendab
Posted
  • Author

I don't think insurance will help cover food (hopefully someone will chime in if I'm wrong, but I've never heard of that). It's almost better not to have it on your medical record in my opinion. If you ever need private insurance, the diagnosis could be a problem. They approve insurance based on a point system. I had my sister look it up for me once (she's an insurance broker), and Celiac diagnosis set me over my point limit - meaning I am unisurable in the private realm. Thank god for group benefits! :blink:

Yikes! Really????? I have so much to think about, I am not sure where to start!

Gardening Apprentice
Gardening
Posted

I thought that with the new healthcare bill, pre-existing conditions were no longer a problem for getting health insurance?

A diagnosis might be helpful/needed for school. She may need accomodations for issues like cross-contamination, art supples (play-doh, glue, etc), she'll need her own food everytie there's a borthday celebration or a pizza party... And then most colleges require you to purchase a full meal plan the first year - which may not work for a celiac.

brendab Contributor
brendab
Posted
  • Author

I thought that with the new healthcare bill, pre-existing conditions were no longer a problem for getting health insurance?

A diagnosis might be helpful/needed for school. She may need accomodations for issues like cross-contamination, art supples (play-doh, glue, etc), she'll need her own food everytie there's a borthday celebration or a pizza party... And then most colleges require you to purchase a full meal plan the first year - which may not work for a celiac.

For now I home school my children for many different reasons, one being many food allergies and this would be just one more for our family. I'm interested to see what else others have to say in their experiences as well. I'm just not wanting to put him through being sick to maybe get a positive result. I wish there was another way :(

my3monkees Rookie
my3monkees
Posted

For now I home school my children for many different reasons, one being many food allergies and this would be just one more for our family. I'm interested to see what else others have to say in their experiences as well. I'm just not wanting to put him through being sick to maybe get a positive result. I wish there was another way :(

I wanted to let you know you are not alone!

I am in the same boat. My 13 has a "tentative" Celiac diagnosis since the ped and I decided not to put her through the scope and her blood work was negative. So it is in her medical record the doctor would back me up and still I find myself saying tentative instead of just saying, yes she has Celiac. Just because she doesn't have that gold standard diagnosis. Which is ridiculous, as she is as text book Celiac as you can get! She told us she would starve rather than go back to eating gluten for the challenge. Two years later, she still says the same thing. She was so tired of being sick and miserable, I can't blame her. So we will go without that official diagnoses, unless she wants it when she is older.

Now I am starting down the same road with my 7 yr. old.

I feel for you, we also homeshool, so we don't have to worry about dealing with the school either.

Hope you get it worked out!

brendab Contributor
brendab
Posted
  • Author

I wanted to let you know you are not alone!

I am in the same boat. My 13 has a "tentative" Celiac diagnosis since the ped and I decided not to put her through the scope and her blood work was negative. So it is in her medical record the doctor would back me up and still I find myself saying tentative instead of just saying, yes she has Celiac. Just because she doesn't have that gold standard diagnosis. Which is ridiculous, as she is as text book Celiac as you can get! She told us she would starve rather than go back to eating gluten for the challenge. Two years later, she still says the same thing. She was so tired of being sick and miserable, I can't blame her. So we will go without that official diagnoses, unless she wants it when she is older.

Now I am starting down the same road with my 7 yr. old.

I feel for you, we also homeshool, so we don't have to worry about dealing with the school either.

Hope you get it worked out!

Thank you for your input, we may or may not simply say he is Celiac just to simplify things. I was thinking today that if we told people he's intolerant they may not take much notice but when people hear the word disease, they tend to take notice and greater care.

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