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False Negative?


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#1 GwenO

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Posted 23 September 2012 - 12:29 PM

My eleven year old daughter was diagnosed by blood test and then biopsy several months ago. Her doctor had me go for the blood test. It came back negative. I've gone gluten free in order to support her anyway, but after a lifetime of "issues", I'm not 100%, but feel much better for the most part.

So I'm reading that a false negative is not uncommon? Nobody else in our family has been tested but nobody else has any symptoms either. My fifteen year old son flat out refuses. Sigh..... But I don't see that he has any issues anyway.

I suppose it doesn't matter, I'll continue to be gluten free anyway. I'm just curious about pursuing a biopsy or just assuming it's the case. Thanks.

I should also mention that my mother has Crohns, and we all three have confirmed Ehlers Danlos Syndrome. I've spent many many years with digestion issues, lots of pain and "attacks" that are very painful.
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#2 Adalaide

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Posted 23 September 2012 - 02:51 PM

Through a weird set of circumstances it was never suspected I had celiac until I was being scoped for something else and the doctor kinda was shocked by the condition of my intestines. He did a biopsy and had blood drawn. The biopsy came back positive but my blood work was negative.

My daughter had negative blood work and has an appointment with a GI in December as we are both absolutely certain she has celiac but will need a confirmed medical diagnosis for college before going gluten free.

Depending on many factors such as how long you've been gluten free, how much damage there was, how quickly you are healing and the frequency of CC a biopsy at this point may or may not be positive for you even if it is truly celiac. It would really be recommended to be eating gluten to have a biopsy.

I'm nine months gluten free and I don't feel 100%. I honestly don't think I ever will, but I do feel a whole lot better than I did a year ago. If you feel better now not eating gluten and are comfortable without a medical diagnosis I wouldn't worry about it.

Based on your family history I would also talk to your families GI doctor and have your son tested. He doesn't have to like it but it's possible not to show any symptoms at all. I know lots of people have mixed houses, even I do (which is not by choice) and it's fine to do. But it won't kill a 15 year old to eat gluten free at home. It isn't like it's his choice to make. Having a gluten free house will eliminate the possibility of CC for your daughter and frankly his unhappiness over after school snack choices isn't nearly as important as your daughter's health.
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#3 GwenO

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Posted 23 September 2012 - 05:15 PM

Through a weird set of circumstances it was never suspected I had celiac until I was being scoped for something else and the doctor kinda was shocked by the condition of my intestines. He did a biopsy and had blood drawn. The biopsy came back positive but my blood work was negative.

My daughter had negative blood work and has an appointment with a GI in December as we are both absolutely certain she has celiac but will need a confirmed medical diagnosis for college before going gluten free.

Depending on many factors such as how long you've been gluten free, how much damage there was, how quickly you are healing and the frequency of CC a biopsy at this point may or may not be positive for you even if it is truly celiac. It would really be recommended to be eating gluten to have a biopsy.

I'm nine months gluten free and I don't feel 100%. I honestly don't think I ever will, but I do feel a whole lot better than I did a year ago. If you feel better now not eating gluten and are comfortable without a medical diagnosis I wouldn't worry about it.

Based on your family history I would also talk to your families GI doctor and have your son tested. He doesn't have to like it but it's possible not to show any symptoms at all. I know lots of people have mixed houses, even I do (which is not by choice) and it's fine to do. But it won't kill a 15 year old to eat gluten free at home. It isn't like it's his choice to make. Having a gluten free house will eliminate the possibility of CC for your daughter and frankly his unhappiness over after school snack choices isn't nearly as important as your daughter's health.


I could have sworn I read two replies and now I only see one My tablet is being wonky...... Thanks for the info. Yes I'm fine without an official diagnosis at this point

My son has made quite an issue out of this. I cook gluten free and he complains constantly. It's also difficult because my mother lives in the lower part of my house and buys stuff for bith kids -although she is very on board with keepi g my daughter gluten free. And there's a money issue. He is 6'3" - the boy eats a lot of snacks! But I agree - he should be tested.
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#4 MitziG

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Posted 23 September 2012 - 08:05 PM

Um, I am sorry, but since when does a 15 yr old get to make decisions regarding his medical care? He gets tested, and take no guff from him. There are over 300 symptoms of celiac, and if he didn't have at least one of them, he would be the healthiest boy alive.

As for you- if you are already gluten-free then it is too late for a biopsy. False negatives are very common, and if you feel better gluten-free, it is probably safe to consider yourself celiac too. I would be willing to bet your doc only ran the ttg on you anyway, not the whole panel.

If you really want proof that she got it from you, you could do gene testing. Of course, that isn't foolproof either, it only identifies the most common celiac genes. But it would PROBABLY give you confirmation.
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#5 GwenO

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Posted 24 September 2012 - 06:49 PM

He isn't in charge. I only meant that if he is positive he will not comply away from home. He will be given a blood test-have doctor appt. I also wonder though about false negatives again. Anyway he is resistant to the possibility and the changes that would entail.
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