First Visit With Pediatric Gi

[ACottrell]

Hi,

I posted last week about my 16-month old who has failure to thrive and came back with a positive celiac panel. The GI doctor, of course, wanted to do the biopsy and we said we weren't interested. He was nice enough, I guess, but when I told him we already put him on the diet and saw results, he kind of shook his head and rolled his eyes. He said we are jumping way ahead and won't ever know if he had celiac without a biopsy. (!)

He did go ahead and send us in for a complete panel to see if Jason has a celiac gene, which is good. Also, he is doing more blood work for other allergies, which I like as well. He said that if Jason doesn't have one of the two genes, then he can't possibly have celiac. Is that true? And if it is, why would he even attempt a biopsy before that if the entire condition can be negated with a little more bloodwork? I suspect he just wants to make a quick buck on a 15-minute procedure, but I'm a bit skeptical of doctors these days.

Oh! And they measured Jason- he is a whole inch taller than he was three weeks ago! DH swore he grew over the weekend since starting the diet and I didn't believe him- is it humanly possible to see that kind of a result that quickly?

In other news, they ran blood work on me and none of my antibodies were elevated. I was disappointed in a way because I want to know for sure what's wrong with my son! Maybe DH has it? Or is it possible to have the gene and not the disease, only to pass it on to children? Sorry, this is all new to me!

Thanks,

Amy

[FeedIndy]

Well, it would be possible (as with anything) to be a carrier of the gene, but not have it yourself. In that case it is most likely that you and your husband both carry the gene.

As to growth that quickly, I can't even imagine! DD gained 5 oz. in 5 days I thought I was going crazy. The nurse weighed her 3 times because she couldn't believe it either. It's also possible that rather than growing a full inch, he is standing taller now that he has the energy from proper nutrition. DD didn't get up on her hands and knees to crawl at all at 9 months. 2 days after going gluten free she was standing in her crib!

The results are truly amazing, aren't they? So what if you never find out if he truly has celiac. I think you've proved it works! Isn't that all that really matters?

[Nic]

My son's ped. GI did the biopsy first and then the gene testing and he is a very good doctor (not out for a buck). He ran the blood first which was positive and then he did the biopsy to confirm the diagnosis. The biopsy results were questionable so he then went for the genetic testing. He said that if Jacob had the Celiac gene(s) then it would only prove that he could possibly have Celiac now or some day. But if he did not have the gene then it would rule it out. I heard from a member here that someone on this board tested positive through blood and biopsy but was negative for the gene. So I don't know for sure, but all the research I have read says that if there is no celiac gene then there is no celiac. I am not sure all labs run the genetic testing or should I say are qualified to run the tests. That may be why they biopsy first, just a guess though.

Nicole

[mommida]

The Celiac gene test through Prometheus Labs has a higher error rate than what doctors first admit. 98% accuracy rate (they know at least 2% will not be detected), any blood test has at least a thirty percent error rate. (from the person drawing the blood, sample storage, and the technitions ability to ran and read the test) There is currently some studies on The parent "carrier gene" that is not detected.

So can the doctor rule out Celiac Disease from a negative gene test? NOPE!

L.

[Nic]

The Celiac gene test through Prometheus Labs has a higher error rate than what doctors first admit. 98% accuracy rate (they know at least 2% will not be detected), any blood test has at least a thirty percent error rate. (from the person drawing the blood, sample storage, and the technitions ability to ran and read the test) There is currently some studies on The parent "carrier gene" that is not detected.

So can the doctor rule out Celiac Disease from a negative gene test? NOPE!

L.

So would you say the error runs on the negative side? For example, if you got a negative you might question it? What about a positive? Do you think the Prometheus gene tests that are positive are accurate?

Nicole

[ACottrell]

So would you say the error runs on the negative side? For example, if you got a negative you might question it? What about a positive? Do you think the Prometheus gene tests that are positive are accurate?

Nicole

From what I hear from everyone, the only really accurate test is an actual dietary trial! I asked the GI doc if we could just do that and he started waving his hand, shaking his head, like it was a terrible idea.

[Ursa Major]

From what I hear from everyone, the only really accurate test is an actual dietary trial! I asked the GI doc if we could just do that and he started waving his hand, shaking his head, like it was a terrible idea.

Ah yes, doctors like to do that. A dietary test won't make him any money, of course. But it is absolutely true, trying the diet is the most valid test there is. If eliminating gluten makes you feel better, don't eat it. You have nothing to lose by trying it. I did, and I don't regret it. No doctor can stop you, what you eat is none of his business.

[Kibbie]

If you want a firm diagnosis where the Dr. says "Your son has ______" sadly most Pediatric GI's are going to require a biopsy. My husband wanted a firm diagnosis so our 18 month old had a biopsy.

After her confirmed diagnosis my grandfather and my husbands grandmother were both diagnosed with Celiac (they got tested because they decided that might be whats wrong with them too)...because of my daughters confirmed diagnosis and their age their Dr's just put them on a Gluten free diet with no biopsy. So my husband and I are carries of at least one gene.

As far as blood work goes..... a positive is about the only thing I trust... I read about false negatives all the time.

[FinsUp]

Our son was 5 when he was diagnosed first with positive bloodwork followed by a positive biopsy. We did not hesitate to have the biopsy. A gluten-free diet is not a temporary fix to celiac; it is a life-long commitment. With a family history of food allergies, we wanted to be absolutely sure that it was celiac before we went gluten-free. We have seen tremendous results in terms of growth since going gluten-free, and we have never once regretted having the biopsy. gluten-free is not like a weight-loss diet that you can follow only when it's convenient or when you are seeing results. You must be diligent at all times. A gluten-free diet also affects the whole family. Many members of this community will attest to the frustrations of dealing with immediate and extended family members who just don't "get" what gluten-free really means. An adult who choses to accept a celiac diagnosis based on dietary change has the right to do so. As a parent, your child relies on you to make these decisions for him or her.

[ACottrell]

Our son was 5 when he was diagnosed first with positive bloodwork followed by a positive biopsy. We did not hesitate to have the biopsy. A gluten-free diet is not a temporary fix to celiac; it is a life-long commitment. With a family history of food allergies, we wanted to be absolutely sure that it was celiac before we went gluten-free. We have seen tremendous results in terms of growth since going gluten-free, and we have never once regretted having the biopsy. gluten-free is not like a weight-loss diet that you can follow only when it's convenient or when you are seeing results. You must be diligent at all times. A gluten-free diet also affects the whole family. Many members of this community will attest to the frustrations of dealing with immediate and extended family members who just don't "get" what gluten-free really means. An adult who choses to accept a celiac diagnosis based on dietary change has the right to do so. As a parent, your child relies on you to make these decisions for him or her.

We didn't flippantly decide to start a gluten-free diet. It was with much consideration that we decided against the biopsy and, from the ladies on this board, I see we aren't the only ones. Don't forget, there is a big difference between a 5-year old and a tiny 1-year old with failure to thrive. We feel it is simply too invasive and risky. A full allergy panel is being run on him, as well, just to make sure we aren't missing any other problems.

[FeedIndy]

That was pretty much our decision. We, in fact, started the gluten free diet even before her bloodwork came back. We did the research, discovered the testing wasn't reliable for children her age anyway, and decided against waiting because we wouldn't have consented to the biopsy anyway. I just felt it was too invasive for a tiny, underweight 1-year-old when a gluten free diet could be a fairly simple thing to try. It worked within days, literally! She had more energy and better diapers even before the doc called with her negative results. When I told him what we did and what we were seeing he ordered allergy testing. He saw her again at day 5 and found she had gained 5 ounces! She had her allergy testing a couple months later, after gaining 2.5 lbs in 2 months. It all came back negative, which led the docs right back to celiac. I was told I'd have to put her back on gluten for a few months and then do a biopsy for a confirmed diagnosis. They also said they wouldn't do that for a couple more years-better to let her catch up on weight for now. It's working, does it really matter why?

[ACottrell]

That was pretty much our decision. We, in fact, started the gluten free diet even before her bloodwork came back. We did the research, discovered the testing wasn't reliable for children her age anyway, and decided against waiting because we wouldn't have consented to the biopsy anyway. I just felt it was too invasive for a tiny, underweight 1-year-old when a gluten free diet could be a fairly simple thing to try. It worked within days, literally! She had more energy and better diapers even before the doc called with her negative results. When I told him what we did and what we were seeing he ordered allergy testing. He saw her again at day 5 and found she had gained 5 ounces! She had her allergy testing a couple months later, after gaining 2.5 lbs in 2 months. It all came back negative, which led the docs right back to celiac. I was told I'd have to put her back on gluten for a few months and then do a biopsy for a confirmed diagnosis. They also said they wouldn't do that for a couple more years-better to let her catch up on weight for now. It's working, does it really matter why?

I completely agree and have seen the same quick results. Better diapers, weight gain, and he is already outgrowing his pants! Why question what is clearly working? It's not like we're getting tunnel vision here, either. If the allergy panel discovers other things, then we will address that as well. It's just so good that he is growing finally, do we really need the "official" diagnosis?