Not Sure What Testing To Push For

[cosmicmouse]

My 2yo has dairy intolerance, and acid reflux. Her grandmother has coeliac disease.

It was mentioned some months ago that we should rule out celiac disease as a potential cause for the acid reflux. A blood test (I believe IGG and IGA) was done and was negative. No figures were given. The paediatrician just wrote to us and said the results were "reassuringly negative".

However, I've been reading more and more about acid reflux in young children (vs infants) and there seems to be an undeniable link between gluten and reflux. So with not much left to lose, we embarked on a gluten free diet. By day 8, she started seeming more settled and on day 9 slept for 6hrs straight for the first time in her life. Normal for her is 3hrs at the most before waking for a breastfeed to go back to sleep. Since then she's continued to sleep much better, and is eating much more than before. A positive effect definitely and I am now pretty sure she is a coeliac like my mum.

Having looked again at coeliac testing, I don't think she was consuming enough gluten to generate a positive result. A "heavy" gluten day for her then would have been quarter of a slice of toast, 2 breadsticks, a cracker and maybe 10-15 pieces of pasta. Not enough, I don't think..?

I want her retested. But I don't think I will be able to get her to eat enough for the blood test :-(

I'd rather not push for biopsy, but I don't know that I've got many other options. And our dietitian said there is no way the paed would diagnose on neg bloods + family history + positive reaction to gluten free diet.

Is biopsy our only option? And does this also depend on a very gluten heavy diet, or would her previous reflux inducing diet be enough?

Any advice appreciated

[shadowicewolf]

My 2yo has dairy intolerance, and acid reflux. Her grandmother has coeliac disease.

It was mentioned some months ago that we should rule out celiac disease as a potential cause for the acid reflux. A blood test (I believe IGG and IGA) was done and was negative. No figures were given. The paediatrician just wrote to us and said the results were "reassuringly negative".

However, I've been reading more and more about acid reflux in young children (vs infants) and there seems to be an undeniable link between gluten and reflux. So with not much left to lose, we embarked on a gluten free diet. By day 8, she started seeming more settled and on day 9 slept for 6hrs straight for the first time in her life. Normal for her is 3hrs at the most before waking for a breastfeed to go back to sleep. Since then she's continued to sleep much better, and is eating much more than before. A positive effect definitely and I am now pretty sure she is a coeliac like my mum.

Having looked again at coeliac testing, I don't think she was consuming enough gluten to generate a positive result. A "heavy" gluten day for her then would have been quarter of a slice of toast, 2 breadsticks, a cracker and maybe 10-15 pieces of pasta. Not enough, I don't think..?

I want her retested. But I don't think I will be able to get her to eat enough for the blood test :-(

I'd rather not push for biopsy, but I don't know that I've got many other options. And our dietitian said there is no way the paed would diagnose on neg bloods + family history + positive reaction to gluten free diet.

Is biopsy our only option? And does this also depend on a very gluten heavy diet, or would her previous reflux inducing diet be enough?

Any advice appreciated

I have heard that eating a slice of bread a day is enough. From what you listed, it seems to be about the same, if not more than, enough.

[nvsmom]

My 2yo has dairy intolerance, and acid reflux. Her grandmother has coeliac disease.

It was mentioned some months ago that we should rule out celiac disease as a potential cause for the acid reflux. A blood test (I believe IGG and IGA) was done and was negative. No figures were given. The paediatrician just wrote to us and said the results were "reassuringly negative".

However, I've been reading more and more about acid reflux in young children (vs infants) and there seems to be an undeniable link between gluten and reflux. So with not much left to lose, we embarked on a gluten free diet. By day 8, she started seeming more settled and on day 9 slept for 6hrs straight for the first time in her life. Normal for her is 3hrs at the most before waking for a breastfeed to go back to sleep. Since then she's continued to sleep much better, and is eating much more than before. A positive effect definitely and I am now pretty sure she is a coeliac like my mum.

Having looked again at coeliac testing, I don't think she was consuming enough gluten to generate a positive result. A "heavy" gluten day for her then would have been quarter of a slice of toast, 2 breadsticks, a cracker and maybe 10-15 pieces of pasta. Not enough, I don't think..?

I want her retested. But I don't think I will be able to get her to eat enough for the blood test :-(

I'd rather not push for biopsy, but I don't know that I've got many other options. And our dietitian said there is no way the paed would diagnose on neg bloods + family history + positive reaction to gluten free diet.

Is biopsy our only option? And does this also depend on a very gluten heavy diet, or would her previous reflux inducing diet be enough?

Any advice appreciated

The IgA and IgG tests are just to test autoimmune function, they are not celiac tests. These are the test you want:

TTG IgA and tTG IgG

DGP IgA and DGP IgG (best test for kids)

EMA IgA

AGA IgA and AGA IgG (older and less reliable tests)

If all tests are negative, and you believe gluten is a problem, go gluten-free. False negatives in kids are not rare, and if you believe the gluten-free diet will help,you should follow your instincts.

Best wishes.