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"official" Diagnosis

anna34

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anna34 Enthusiast
anna34
Posted

We're waiting for blood test results for ourselves and our daughter has been diagnosed with celiac disease.

What are the benefits of being "officially" diagnosed through the biopsy? I mean, if our blood results have high Ttg numbers, that means we are reacting to gluten to some degree, so the diet will help - right? Are there any advantages to being officially diagnosed with celiac disease versus assuming that you either have it or have sensitivity to gluten, and just choosing the diet?

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MsCurious Enthusiast
MsCurious
Posted

We're waiting for blood test results for ourselves and our daughter has been diagnosed with celiac disease.

What are the benefits of being "officially" diagnosed through the biopsy? I mean, if our blood results have high Ttg numbers, that means we are reacting to gluten to some degree, so the diet will help - right? Are there any advantages to being officially diagnosed with celiac disease versus assuming that you either have it or have sensitivity to gluten, and just choosing the diet?

It is a myth that if you have celiac disease, all you need to worry about is avoiding gluten.

Even when they're completely gluten-free, people with celiac disease need to be concerned about their cholesterol levels, their vitamin status, and their weight. In addition, people with celiac disease need to be aware that a variety of symptoms and medical conditions can be related to celiac disease.

If you are diagnosed, your medical provider will be more likely to monitor and watch for things that could develop related to celiac disease. Also, I think it gives you necessary "ammo" to get schools to comply with gluten-free diet restrictions for your child, and in some countries, an official diagnosis allows for benefits to help offset added expense of gluten-free diet. Hope this helps.

ravenwoodglass Mentor
ravenwoodglass
Posted

If your blood tests are positive some doctors will diagnose based on that and response to the diet since there is a risk of false negatives with both blood and biopsy. Some people would rather not have a preexisting condition in their insurance files so they chose not to do an 'official' diagnosis. Some folks also need to have the 'official' diagnosis to encourage them to be strict with the diet but many have such severe repercussions from 'cheating' that the reaction is enough for them to be compliant. It can also be easier to get some family members to accept the diagnosis and get tested themselves if the diagnosis is 'official'. All first degree family members should be tested when one is diagnosed even if they don't have symptoms.

GFinDC Veteran
GFinDC
Posted

Some people want to participate in clinical trials for celiac treatments. Usually they want only biopsy diagnosed celiacs for the trials. Do if you want your kid to be a guenia (sp) pig then get her endoscoped.

Otherwise there is not much advantage to it that I can see. Assuming that the relates are smart enough to get tested also. The only treatment right now is the gluten free diet. And doctors don't help much with that.

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

It is a myth that if you have celiac disease, all you need to worry about is avoiding gluten.

Even when they're completely gluten-free, people with celiac disease need to be concerned about their cholesterol levels, their vitamin status, and their weight. In addition, people with celiac disease need to be aware that a variety of symptoms and medical conditions can be related to celiac disease.

If you are diagnosed, your medical provider will be more likely to monitor and watch for things that could develop related to celiac disease. Also, I think it gives you necessary "ammo" to get schools to comply with gluten-free diet restrictions for your child, and in some countries, an official diagnosis allows for benefits to help offset added expense of gluten-free diet. Hope this helps.

I agree with this my son was recently diagnosed and we were told because his levels were really high he most likely had celiac but the scope would confirm it. As the pediatrician suggested this is a life long thing so make sure. The fact that we needed complete comfirmation so we could claim the added expense for his food was a factor too. :)

I also have a question quite similar. My son has had the blood work, the scope but hasn't had a biopsy of his rash to confirm if it is DH, is this necessary? Doctor doesnt want to do it and he says it is echema. Would there be any point or just go with my instinct that the doctor is a quack. I've considered a differnt dermitoligist and insist it be done but really is their any point?

ravenwoodglass Mentor
ravenwoodglass
Posted

I also have a question quite similar. My son has had the blood work, the scope but hasn't had a biopsy of his rash to confirm if it is DH, is this necessary? Doctor doesnt want to do it and he says it is echema. Would there be any point or just go with my instinct that the doctor is a quack. I've considered a differnt dermitoligist and insist it be done but really is their any point?

If your son has already been diagnosed celiac then IMHO there wouldn't be any reason to have the DH confirmed. The only thing you would do for DH other than the diet would be avoid iodine until the rash is well healed. Some doctors will prescribe dapsone but I don't know that they would give that to a young child as it can be a pretty toxic med.

hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

If your son has already been diagnosed celiac then IMHO there wouldn't be any reason to have the DH confirmed. The only thing you would do for DH other than the diet would be avoid iodine until the rash is well healed. Some doctors will prescribe dapsone but I don't know that they would give that to a young child as it can be a pretty toxic med.

K thanks that is what I've been doing thanks to everyones insite on here :) I didn't know if there were any other reason to have him tested for sure.

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