RE: Help needed - What to do next? Ped recommendation?

[Guest guest]

I recommend doing the blood test again. Since he was asymptomatic when he had a

negative blood test 6 months ago, he might now--because he has symptoms--be

positive. If he is positive, you can decide if you want to go ahead with the

biopsy.

[We did not choose to have a biopsy for our son after his bloodwork was

positive. The family history and his symptoms were factors as well.

Our pediatric GI doc said that he could very well have a negative biopsy, and

that we would then test again yearly. We figured that it didn't make sense for

us to put a child through an invasive procedure that might be falsely negative,

only to wait until the damage was visible on biopsy in time. But you have to

make the choice that's right for your family.]

Anyway, it seems like the simplest, least invasive thing to do would be to

repeat the blood work, and then you can make an informed decision from there.

I would be helpful to not have to rely on your general pediatrician for celiac

info. Are you in/near SF? The pediatric specialties clinic at UCSF has a

pediatric GI who would be helpful. It would at least be worth you having a

consult with them to help with the decision-making process.

The celiac specialist is Patrika Tsai. She was on maternity leave and I'm not

sure if she's back yet. You can ask for Mel Heyman, who heads the GI department,

and see who he says to see.

Good luck!

Marci

> From: misswelch02 <homekew@...>

> Subject: [ ] Help needed - What to do next? Ped recommendation?

>

> Date: Tuesday, July 28, 2009, 5:36 PM

> I have Celiac and recently began

> talking to my son's pediatrician more about getting him

> tested b/c  he has started showing growth problems and

> digestive issues. He had the blood antibodies test done when

> he was 18 mos and the results were fine at that time. That

> was six months ago, but then he started having these other

> issues so I asked if we should consider looking at Celiac

> again.

>

> Anyway, we did the gene test and he tested positive for the

> HLA allele, and is homozygous for the DQB1*02 allele. I

> totally understand that just because he tested positive for

> the gene doesn't mean he will develop celiac so I'm not

> assuming he has it now.

>

> My dilemma is  that I'm not sure where to go from

> here. My pediatrician will want to go ahead and do a biopsy

> now since he's having other issues which I think makes

> sense. The thing is, if the biopsy comes back negative, do I

> just monitor him closely for the rest of his life to watch

> for obvious celiac symptoms and then get him retested?

> Should I do yearly antibody testing? Aren't there a lot of

> people with Celiac that don't show obvious outward symptoms

> but are still experiencing internal issues? 

>

> I love my pediatrician but I don't think she's all that in

> the know about Celiac disease, so I'm also looking for any

> recommendations for good Pediatrician should we need one.

>

> Sorry for the long post - I'm just trying to make sense of

> this all and I don't want my son to suffer like I did for so

> many years if he doesn't have too.

>

> ps: Some may say why not just have him go gluten free

> without the diagnosis, but that's not an option we are

> considering. I would want the diagnosis before putting him

> on something so restrictive for life.

>

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

If

it's been 6 months since the antibody test, I'd do that again prior to a

biopsy. If positive, then a biopsy could be done, but you could also

deduce that he very likely does have celiac based upon his antibodies, your

diagnosis and his symptoms. If you do a biopsy, it should be done by a

gastrointestinal doctor who knows what to look for, not by your pediatrician.

She should make a referral for you.

If

his blood test is still negative, you could still ask for a referral to a

gastro and get his/her opinion on whether to do a biopsy anyway. Some say that

even if antibodies are normal, he could still be experiencing damage, however

it becomes a *whole lot* less likely.

We

monitor our unaffected daughter (who is HLA positive) every two years with a

blood test. If she experienced symptoms we would not wait the 2 years to do the

blood test. If she were positive for antibodies I doubt we’d do the

biopsy for her given her sister’s diagnosis.

There

are many possible reasons for growth and digestive problems, however given your

family history of celiac disease, you're clearly right to check this first.

However, don't allow a negative result here blind you to other potential causes

-- your doctor should be aware of what these could be.

Best

wishes!

From:

[mailto: ] On

Behalf Of misswelch02

Sent: Tuesday, July 28, 2009 5:37 PM

Subject: [ ] Help needed - What to do next? Ped

recommendation?

I have Celiac and recently began talking to my

son's pediatrician more about getting him tested b/c he has started showing

growth problems and digestive issues. He had the blood antibodies test done

when he was 18 mos and the results were fine at that time. That was six months

ago, but then he started having these other issues so I asked if we should consider

looking at Celiac again.

Anyway, we did the gene test and he tested positive for the HLA allele, and is

homozygous for the DQB1*02 allele. I totally understand that just because he

tested positive for the gene doesn't mean he will develop celiac so I'm not

assuming he has it now.

My dilemma is that I'm not sure where to go from here. My pediatrician will

want to go ahead and do a biopsy now since he's having other issues which I

think makes sense. The thing is, if the biopsy comes back negative, do I just

monitor him closely for the rest of his life to watch for obvious celiac

symptoms and then get him retested? Should I do yearly antibody testing? Aren't

there a lot of people with Celiac that don't show obvious outward symptoms but

are still experiencing internal issues?

I love my pediatrician but I don't think she's all that in the know about

Celiac disease, so I'm also looking for any recommendations for good

Pediatrician should we need one.

Sorry for the long post - I'm just trying to make sense of this all and I don't

want my son to suffer like I did for so many years if he doesn't have too.

ps: Some may say why not just have him go gluten free without the diagnosis,

but that's not an option we are considering. I would want the diagnosis before

putting him on something so restrictive for life.