Still Waiting For 2nd Blood Test Results...fingers Crossed

[vampella]

What I wanted to know is more information of testing and the inaccuracy in children.

My ped keeps saying here in manitoba we use the TTG and it's the most sensitive test going. I called him on it once and thats what he said. I know this is untrue but would like more info so I can throw it at him when Emmah goes back for her weekly height and weight in a week.

I haven't even told him that she is gluten-free, I am waiting until her appointment and if she's gained weight I will be like and that gain/staying the same is all because she is gluten free.

I would like to do entrolab testing they got back to me yesterday about cost and shipping to canada. it 369+ 20.00 for shipping outside of the us and then i have to ship it back which she said would be very pricy. I do have to e-mail her back because I am sure she quoted me in US funds but either way I can't afford that right now. I'll tell the GI when I see him that she is gluten-free and she is NOT doing a biopsy at this time if ever.

Any help with the test amo would be greatly appreciated.

Thanks again

Char

[AmandaD]

Hi...I would agree with your doc that the TTG is the most sensitive test going.

My number was only VERY slightly elevated - I mean like by one point - and very few gluten-like systems. My doc saw it, decided to pursue a biopsy and sure enough the biopsy showed the very beginning of Celiac Sprue. She could have totally written it off, but she explained that the TTG is super-good now. They're refining it.

It's called the TTG Iga-antibody test.

I think you should trust your doctor, don't go spending money yet on Enterolab.

AK

HOWEVER, if you've got your child on a gluten-free diet - that test is absolutely not going to come up positive and it's going to skew the results. You have to be careful just putting your child on the diet before really getting an accurate diagnosis - you'll read that same comment in any trustworthy literature on Celiac. I have three kids and I'm pretty knowledgeable about the whole diagnostic process...I have it and my doc at the hospital said there's a good chance one of them could develop it, so we've worked out a plan where we TTG test them every 3 years. This is the recommendation from the Univ of Chicago Celiac Center as well...

[vampella]

Hi...I would agree with your doc that the TTG is the most sensitive test going.

My number was only VERY slightly elevated - I mean like by one point - and very few gluten-like systems. My doc saw it, decided to pursue a biopsy and sure enough the biopsy showed the very beginning of Celiac Sprue. She could have totally written it off, but she explained that the TTG is super-good now. They're refining it.

It's called the TTG Iga-antibody test.

I think you should trust your doctor, don't go spending money yet on Enterolab.

AK

HOWEVER, if you've got your child on a gluten-free diet - that test is absolutely not going to come up positive and it's going to skew the results. You have to be careful just putting your child on the diet before really getting an accurate diagnosis - you'll read that same comment in any trustworthy literature on Celiac. I have three kids and I'm pretty knowledgeable about the whole diagnostic process...I have it and my doc at the hospital said there's a good chance one of them could develop it, so we've worked out a plan where we TTG test them every 3 years. This is the recommendation from the Univ of Chicago Celiac Center as well...

I have to say this,your expeience is rare in my experiences.

Even my grandmother who had sever damage from celiac disease was tested NEG 6 times and a biopsy was incon. The only way they found out she was celiac was to break on of her blisters and test the fluid. However that is done. my brother and 2 of his children have celiac disease. first tests neg. I know many children that have tested neg in the past and had celiac, I am not saying it's not accurate in adults but in children the evidence seems to be weighing the unaccurate way.

Trust me I am not going into this knowing nothing, but I will NOt sit buy while my child dies.

Emmah lost over 4 lbs in less than 2 months, she hasn't grown since she was 18 months old and has had D since I can remember going on average of 4 times a day . she will be 4 very soon and is 25 lbs. there are many other symptoms but I think I've explained myself enough.

I decided to do the gluten challenge AFTER her blood was drawn for her second testing. I am awaiting the results now.

I will also say her first test was done before the weight loss and worsining of symptoms and her doctor said her body may not have been ready for it yet.

I was also told by many that if she does great on the diet there is no need to put her back on gluten to have a biopsy done to confirm what I already know. I understand that you have celiac but it seems to be a different playing feild in children, a test that is sensitive for you may not be as sensitive in children.

I am not putting my money on entrolabs yet but one day in the future I may. BUT the only *true* test for celiac disease is the diet ..then, I will have my results in a few months. I would rather spend a million dollars on food for my daughter than see her sick for one more second. I know you understand that.

I got a ton of help and advice from celiac canada, I didn't just jump in.

I love my kids and will do anything to keep them alive and well.

I also want to add that gluten-free will not screw with any other test the GI might want to do so I am doing NO HARM at all. Emmah and i are seeing a dietician(sp? lol) tomorrow to make sure we are doing everything correct.

Char

[chrissy]

i totally agree with amanda! our ped gi seems to be very knowledgeable and up-to-date on his celiac info and he has tested my entire family (even the adults) using the TTg test and a total serum IgA. if a person is IgA deficient, a normal celiac test will not work. enterolab does NOT test for IgA deficientcy. if you have already put your daughter gluten free, testing will not work. it almost sounds like you don't like your doctor. am i reading this wrong? maybe you would be happier with a different doctor?

how old is your daughter? age does make a differenc in the accuracy of the tests.

i haven't seen your other posts-----could you fill me in a little on what your daughter's ymptoms are?

i must have posted the same time as you!!LOL!! you just answered my questions. our ped gi told me that the tests start to be accurate around age 3. sounds like you knew what you were doing by waiting for after the blood draw to start gluten free.

we know that one of our children has the celiac gene, but no disease at this time. he is IgA deficient and has to have specialized testing done. he will be tested on a yearly basis.

our family is involved in a celiac study at this time, so we will know who is genetically susceptible. ( and it saves me alot of money!)

[vampella]

So I called the peds office again today to see if the test results were back and the young girl said she found emmah's file on his desk.

she said he could be writing a letter to the specilist again or the results could be back, he will call me in the next few days if the results are in...I AM GOING CRAZY...give me the results already. NOW I wish I wouldn't have called...eeerrr.

[chrissy]

i hate waiting, too!!!

[CantEvenEatRice]

I originally had bloodwork done on my 20 month old son, but the lab lost most of it. They ran the gliadin antibodies and they were negative. I decided to go with Enterolab and he was positive for both gluten and dairy intolerance. We just had an allergy panel done today and the doctor ordered the transglutamise (spelling?) tests as well. However, my son has been off of gluten for 3 weeks so I know they will not be accurate. At this point, I do not want to put him back on gluten to re-run the tests when I am not sure if we would get a false negative anyhow. My husband and I think it is best if he remains gluten and dairy free. I think positive dietary response is one of the best ways to tell if gluten is the problem. I figure that when my son is older he can have the choice to challenge the gluten if he wants. I went undiagnosed for 25 years and have a lot of damage as a result. I think every family has to decide what is best for them. But you do not need to have an official diagnosis to go gluten free.

[AmandaD]

I have to say this,your expeience is rare in my experiences.

Even my grandmother who had sever damage from celiac disease was tested NEG 6 times and a biopsy was incon. The only way they found out she was celiac was to break on of her blisters and test the fluid. However that is done. my brother and 2 of his children have celiac disease. first tests neg. I know many children that have tested neg in the past and had celiac, I am not saying it's not accurate in adults but in children the evidence seems to be weighing the unaccurate way.

Trust me I am not going into this knowing nothing, but I will NOt sit buy while my child dies.

Emmah lost over 4 lbs in less than 2 months, she hasn't grown since she was 18 months old and has had D since I can remember going on average of 4 times a day . she will be 4 very soon and is 25 lbs. there are many other symptoms but I think I've explained myself enough.

I decided to do the gluten challenge AFTER her blood was drawn for her second testing. I am awaiting the results now.

I will also say her first test was done before the weight loss and worsining of symptoms and her doctor said her body may not have been ready for it yet.

I was also told by many that if she does great on the diet there is no need to put her back on gluten to have a biopsy done to confirm what I already know. I understand that you have celiac but it seems to be a different playing feild in children, a test that is sensitive for you may not be as sensitive in children.

I am not putting my money on entrolabs yet but one day in the future I may. BUT the only *true* test for celiac disease is the diet ..then, I will have my results in a few months. I would rather spend a million dollars on food for my daughter than see her sick for one more second. I know you understand that.

I got a ton of help and advice from celiac canada, I didn't just jump in.

I love my kids and will do anything to keep them alive and well.

I also want to add that gluten-free will not screw with any other test the GI might want to do so I am doing NO HARM at all. Emmah and i are seeing a dietician(sp? lol) tomorrow to make sure we are doing everything correct.

Char

Char -

I am certainly not at all suggesting you would harm your child; I do want you to know I understand what it means to be in the throes of worry. It's frustrating and it can be unrelenting, especially when it comes to your children.

However, you meantion that "gluten-free will not screw with any other test the GI might want to do" - that statement is incorrect if you are talking about the TTG test. If your child has been gluten free for a week or two there's a significant chance it will return negative. That's acc. to Celiac literature.

I think you are very smart for pursuing the Celiac avenue with your child, particularly since you said there's a genetic familial link...but I do think you also need to listen carefully to what your doctor says. Not all docs are bad. There are a lot out there that are good and I would really talk with them about your decision to create a gluten-free diet for your child immediately - the doc may have some important advice on that.

AK

[vampella]

No,no. Emmah has already had the blood work done. Guess I didn't touch on that point earlier, sorry.

Right now we are just waiting to see what the results are when they come back from the lab. We didn't go gluten free until a week after her blood was drawn for testing.

Char -

I am certainly not at all suggesting you would harm your child; I do want you to know I understand what it means to be in the throes of worry. It's frustrating and it can be unrelenting, especially when it comes to your children.

However, you meantion that "gluten-free will not screw with any other test the GI might want to do" - that statement is incorrect if you are talking about the TTG test. If your child has been gluten free for a week or two there's a significant chance it will return negative. That's acc. to Celiac literature.

I think you are very smart for pursuing the Celiac avenue with your child, particularly since you said there's a genetic familial link...but I do think you also need to listen carefully to what your doctor says. Not all docs are bad. There are a lot out there that are good and I would really talk with them about your decision to create a gluten-free diet for your child immediately - the doc may have some important advice on that.

AK

[AmandaD]

No,no. Emmah has already had the blood work done. Guess I didn't touch on that point earlier, sorry.

Right now we are just waiting to see what the results are when they come back from the lab. We didn't go gluten free until a week after her blood was drawn for testing.

Got it, now that makes sense...