Anybody Up Late Tonight? Please Help!

[azmom3]

This is keeping me up tonight!

My 10 year old's celiac bloodwork came back today. The doctor said he's negative for celiac, but "his IgA is low, which just means he's more susceptible to viral infections." From what I've been reading, it sounds to me like if the IgA number is low, then the test won't be accurate because it's all based on these numbers being normal....is this right? Anybody know what percentage of people can have celiac with low IgA? Does this increase or decrease your chances or make any difference at all?

He's been so sick for the last 2 months and has always been on the small side (60 pounds). He looks very pale, has big bags under his eyes, and is falling asleep in school. We did a lot of bloodwork about a week ago, in addition to the celiac panel, (getting blood drawn was AWFUL for him....he cried through the whole thing), but everything came back negative. They had us go back in for another blood draw this week to have him tested for mono, but after I called for the results, they called me back to say the lab doesn't have his blood and they aren't sure where it is! So, unless they can find it, we will be going back in again.

BTW, his little sister had mono this past April, so if he got it, could that be the trigger to cause Celiac and possibly these symptoms? Also, how long after the trigger would blood show positive? If it's been a month or two, would that be enough time? He has been eating gluten every day.

My son told me today that he wished he had celiac so he could "eat their macaroni and cheese" and feel better. I explained that we will do the gluten-free diet regardless to see if it will help him. I feel so bad for him. If you can help with any of my questions, I would greatly appreciate it.

Trying to diagnose our kids because the doctors can't or won't is driving me crazy!

[rinne]

I'm sorry not to be of any help, just wanted to say I hope you get some answers and I'm glad to know you are planning on trying a gluten free diet regardless. It can be an accurate diagnostic tool. It must be so hard to see your child suffer.

[evie]

This is keeping me up tonight!

My 10 year old's celiac bloodwork came back today. The doctor said he's negative for celiac, but "his IgA is low, which just means he's more susceptible to viral infections." From what I've been reading, it sounds to me like if the IgA number is low, then the test won't be accurate because it's all based on these numbers being normal....is this right? Anybody know what percentage of people can have celiac with low IgA? Does this increase or decrease your chances or make any difference at all?

He's been so sick for the last 2 months and has always been on the small side (60 pounds). He looks very pale, has big bags under his eyes, and is falling asleep in school. We did a lot of bloodwork about a week ago, in addition to the celiac panel, (getting blood drawn was AWFUL for him....he cried through the whole thing), but everything came back negative. They had us go back in for another blood draw this week to have him tested for mono, but after I called for the results, they called me back to say the lab doesn't have his blood and they aren't sure where it is! So, unless they can find it, we will be going back in again.

BTW, his little sister had mono this past April, so if he got it, could that be the trigger to cause Celiac and possibly these symptoms? Also, how long after the trigger would blood show positive? If it's been a month or two, would that be enough time? He has been eating gluten every day.

My son told me today that he wished he had celiac so he could "eat their macaroni and cheese" and feel better. I explained that we will do the gluten-free diet regardless to see if it will help him. I feel so bad for him. If you can help with any of my questions, I would greatly appreciate it.

Trying to diagnose our kids because the doctors can't or won't is driving me crazy!

That sounds like a good idea to try the gluten free foods to see if that helps your ds. sometimes the Dr's just don't get the reason for problems, especially if they have not had other celiac patients. I know it must be hard to see your child suffering and not know how to help. It is bad enough when it is yourself because grown ups cam be in control to a certain extent but with your child it is different.

I had different tests than the Iga type but hopefully someone will come on/ better answers. My problems went undiagnosed for over 20 yrs. so I ended up being diagnosed 6 months ago at the age of 77 but I am glad it ws not later. But I was losing weight fast from diarhea so went to University hospital for my testing.

I am slowly getting better and am sure your son will be too. He will heal so much faster than an older person like me. P rayers for you and family. evie

[azmom3]

I'm sorry not to be of any help, just wanted to say I hope you get some answers and I'm glad to know you are planning on trying a gluten free diet regardless. It can be an accurate diagnostic tool. It must be so hard to see your child suffer.

Thank you! I feel better now that I vented everything to anyone who would listen.

That sounds like a good idea to try the gluten free foods to see if that helps your ds. sometimes the Dr's just don't get the reason for problems, especially if they have not had other celiac patients. I know it must be hard to see your child suffering and not know how to help. It is bad enough when it is yourself because grown ups cam be in control to a certain extent but with your child it is different.

I had different tests than the Iga type but hopefully someone will come on/ better answers. My problems went undiagnosed for over 20 yrs. so I ended up being diagnosed 6 months ago at the age of 77 but I am glad it ws not later. But I was losing weight fast from diarhea so went to University hospital for my testing.

I am slowly getting better and am sure your son will be too. He will heal so much faster than an older person like me. P rayers for you and family. evie

Evie,

I'm so glad they were able to find out what was wrong with you and get you feeling better....it's too bad it took so long and you had to deal with symptoms for 20+ years though. Prayers to you and your family, also! And thanks for the reply.

[2kids4me]

I hope they investigate further.

A low IgA does have significance - they need to do more specific tests for celiac and any autoimmune disease they think could be causing his symptoms.

Low levels of IgA occur in some types of kidney damage (nephrotic syndrome), a problem with the intestines (enteropathy), and a rare inherited disease that affects muscle coordination (ataxia-telangiectasia). Some people are born with low or absent levels of IgA antibodies, which increases their chances of developing an autoimmune disease.

I hope they find the blood!

Very frustrating esp when you have a child that doesnt feel well - last thing you need.

Dont let them stop til they get to the bottom of why he is sick. And no harm in going gluten-free, if he gets better - you have the answer with the bonus of not having more diagnostics

..

Let us know what they find out and how he does on gluten-free.

[azmom3]

I hope they investigate further.

A low IgA does have significance - they need to do more specific tests for celiac and any autoimmune disease they think could be causing his symptoms.

I hope they find the blood!

Very frustrating esp when you have a child that doesnt feel well - last thing you need.

Dont let them stop til they get to the bottom of why he is sick. And no harm in going gluten-free, if he gets better - you have the answer with the bonus of not having more diagnostics

..

Let us know what they find out and how he does on gluten-free.

Thank you, 2kids4me! I'm going to do a little more research on the low IgA stuff and see if any of it sounds like him. It's nice to get reassurance from everyone on here as you really start feeling like a hypochondriac sometimes.

[MaryKyburz]

My 3 yr old had high IGA, and they said if he had celiac, then he would have low IGA. So I think that low IGA is a sign of celiac. Maybe do a google search for "low IGA celiac" and see what you get.

[sparkles]

I am sorry for all the trials that you are going through. There is nothing harder than having a sick baby! Sometimes we just have to go with our gut instinct. If you think that it is celiac disease, than a gluten free diet is the only answer. We really have control over that. We don't need a prescription nor do we need our doctor's approval to start a gluten-free diet. That is the one great thing about celiac disease, WE can make up our own minds about whether or not to go gluten-free. The food tends to be more expensive if you do a lot of baking or use prepackaged food but if you go with the basics...meat, fruits, veggies....than it isn't so expensive. I hope that you get some answers for your little one.

[chrissy]

my 17 year old son is IgA deficient. our ped gi had a whole different set of tests run on him, including gene testing, because the normal tests are useless with a low IgA. we learned that he is genetically susceptible to getting celiac, but does not appear to have any active disease right now.

low IgA is not a sign of celiac, but it often goes along with celiac. when a celiac test is run, a total IgA serum also needs to be run to make sure the test will give you accurate information.

my son's labwork was done through promethius labs in california. it was pretty pricey, but i finally got the insurance to pay for it after the doc sent a letter. (they had previously refused to pay). i now know that we need to test him on a yearly basis, at least, to see if celiac disease is ever activated in him.

[azmom3]

I am sorry for all the trials that you are going through. There is nothing harder than having a sick baby! Sometimes we just have to go with our gut instinct. If you think that it is celiac disease, than a gluten free diet is the only answer. We really have control over that. We don't need a prescription nor do we need our doctor's approval to start a gluten-free diet. That is the one great thing about celiac disease, WE can make up our own minds about whether or not to go gluten-free. The food tends to be more expensive if you do a lot of baking or use prepackaged food but if you go with the basics...meat, fruits, veggies....than it isn't so expensive. I hope that you get some answers for your little one.

Thanks Sparkles! We are definitely trying the gluten-free diet anyways.

my 17 year old son is IgA deficient. our ped gi had a whole different set of tests run on him, including gene testing, because the normal tests are useless with a low IgA. we learned that he is genetically susceptible to getting celiac, but does not appear to have any active disease right now.

low IgA is not a sign of celiac, but it often goes along with celiac. when a celiac test is run, a total IgA serum also needs to be run to make sure the test will give you accurate information.

my son's labwork was done through promethius labs in california. it was pretty pricey, but i finally got the insurance to pay for it after the doc sent a letter. (they had previously refused to pay). i now know that we need to test him on a yearly basis, at least, to see if celiac disease is ever activated in him.

Thank you! I questioned our dr. again today and didn't get anywhere with this. He's the one who originally suggested celiac for our youngest, who tested positive. I had never even heard of it before that. We'll have to figure it out by diet and/or eventually enterolab or new doctors. Do you know if it matters how low the IgA numbers are? Are you more likely to have problems the lower it is? As far as your son, will you test by blood every year? I think we need to do the gene testing, too....did you do this with blood, enterolab, ....what are my options? Thanks for your help!

THE LAB FOUND OUR SON'S BLOOD! They spelled his name wrong, but ended up tracking it down. His mono test came back saying he doesn't currently have it, but did in the past...they can't tell when. I'm assuming this was about 2 months ago because he had a fever and was sick and has been very, very tired and not himself ever since. Thanks everyone for all your input on the subject!

[Mayflowers]

Hi,

I have two sons 14 and 16 and they are refusing to get tested for gluten intolerance. Well I can say I at least tried.

I recommend the Enterolab stool specimen test. I had the full panel. I am also dairy intolerant. You might get a better idea. Dr. Fine says the stool test is more accurate than the blood test. The basic test is only $99 your insurance might cover it.

www.enterolab.com

[chrissy]

do you have a copy of your son's lab report so can actually see how low is IgA level is? the fererence range on the TTg test we had done on him said that .7 was normal-------ian was .1 i kind of figure that his deficiency might explain why he always seems to havae a cold in the winter, and why he had so many ear infections as a baby.

do you have a copy of your son's lab report so can actually see how low is IgA level is? i kind of figure that his deficiency might explain why he always seems to have a cold in the winter, and why he had so many ear infections as a baby.

[sparkles]

Just a note on the mono diagnosis.... When I had mono (many years ago now), I was very sick and had my parents not traveled several 100 miles to get me and promise the doc that there would be someone home to take care of me and they would continue to monitor certain body functions (liver, I think), I would have ended up in the hospital. As it was, I was off work for over 2 months and it took well several years for my body to recover. It seemed in that time, I got every bug that went around and since I was teaching school at the time there were a whole lot of bugs. so the mono diagnosis can explain a lot. I know that he docs don't always think that it takes a long time to recover, but anyone who has had a BAD case of mono will tell you that it doesn't go away quickly. What a bummer.... it may take your little one a LONG time to be on the mend.

[azmom3]

do you have a copy of your son's lab report so can actually see how low is IgA level is? the fererence range on the TTg test we had done on him said that .7 was normal-------ian was .1 i kind of figure that his deficiency might explain why he always seems to havae a cold in the winter, and why he had so many ear infections as a baby.

do you have a copy of your son's lab report so can actually see how low is IgA level is? i kind of figure that his deficiency might explain why he always seems to have a cold in the winter, and why he had so many ear infections as a baby.

I don't have a copy, but will try to get it as soon as possible. The doctor was very non-chalant when he told me, so you think it would just be a little low, but who knows with everything else the doctors say.

Just a note on the mono diagnosis.... When I had mono (many years ago now), I was very sick and had my parents not traveled several 100 miles to get me and promise the doc that there would be someone home to take care of me and they would continue to monitor certain body functions (liver, I think), I would have ended up in the hospital. As it was, I was off work for over 2 months and it took well several years for my body to recover. It seemed in that time, I got every bug that went around and since I was teaching school at the time there were a whole lot of bugs. so the mono diagnosis can explain a lot. I know that he docs don't always think that it takes a long time to recover, but anyone who has had a BAD case of mono will tell you that it doesn't go away quickly. What a bummer.... it may take your little one a LONG time to be on the mend.

As much as I don't like to hear that, part of me is glad because it explains everything. My daughter has not been the same since her mono this past spring. I keep wondering whether it's from the mono still or if she's just a sleeper. She's almost 8 and still takes naps whenever she can and wherever she can (the car, the floor...it doesn't matter) Hopefully, my son won't take as long.

BTW, I'm not sure about the liver, but I do know that both my kids had enlarged spleens and were told to restrict any physical activities for a while so it didn't rupture. (If it ruptured, this could cause them to bleed to death if they weren't treated quickly.)

I think the older you get, the worse your symptoms can be, so maybe I should be thankful that they got it this young???

[chrissy]

hi azmom3-----i pulled out some of our tests so i could tell you about low IgA. there are different reference ranges for different ages. this is what four of our tests say--(ages 15-50) we all have a reference range of 44-441----i assume anything between these numbers is normal. kevin is 233, i am 203, kassie is 64, and ian, the one that is deficient, is less than 6. our TTg scores were: (in the same order) .6, .6, 18.7(celiac), and .1 (IgA deficient) i try to get copies of all blood we have done. when we have Ian tested in the future i think that they will test IgG transglutaminase levels----but i am NOT positive about that---i just know it will not be the standard tests. i ped gi told us that promethius was the only lab in the country that ran the tests that answered what they were looking for. at the risk of getting chewed out, i personally would wonder about a lab that runs tests without a doctors orders

[azmom3]

hi azmom3-----i pulled out some of our tests so i could tell you about low IgA. there are different reference ranges for different ages. this is what four of our tests say--(ages 15-50) we all have a reference range of 44-441----i assume anything between these numbers is normal. kevin is 233, i am 203, kassie is 64, and ian, the one that is deficient, is less than 6. our TTg scores were: (in the same order) .6, .6, 18.7(celiac), and .1 (IgA deficient) i try to get copies of all blood we have done. when we have Ian tested in the future i think that they will test IgG transglutaminase levels----but i am NOT positive about that---i just know it will not be the standard tests. i ped gi told us that promethius was the only lab in the country that ran the tests that answered what they were looking for. at the risk of getting chewed out, i personally would wonder about a lab that runs tests without a doctors orders

Thanks so much for the info! The numbers are always so confusing it seems.