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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Blood Test Results?
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31 posts in this topic

Does anyone know what the normal and above normal ranges are for celiac blood tests?         My 6 year old just had some tests done, and the doctor showed my wife a peice of paper with results, but didnt get to see it very good.  It appeared they only tested 2 different things.

 

Anyone know the ranges?

Edited by Chris04626
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Each lab sets their own ranges for the various tests performed.  They will generally have a negative, a weak positive (equivocal), and a strong positive.  The numbers can be different at each lab.  You should get a printout of the lab results from your doctor for your own records, and if you would care to share them with us we would be happy to comment.

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HE kinda just flashed them in front of my wife and sounded like he didnt think we even need to get a biopsy and is setting us up with a nutrionist

 

There was one that had a range of 0 to 180s  and my sons was 140ish

There was another that was 1 to 14 and my son had a 28

 

What 2 would they normally test for?

Edited by Chris04626
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Doctors do have this "flashing" habit, if they bother at all.  Most of the time they just TELL you.  It is always a good idea to have your own copies of results for reference down the line.  I get copies of all mine, and of consultant's reports.  You really need to know what they're saying and doing.

 

That being said, most likely the first test was the total serum IgA which would probably have numbers in that range for a six-year-old - normal IgA falling anywhere within the stated range up to 180 something.  The other test was probably the doctors' favorite, the tTG (tissue transglutaminase), and if the range only went to 14 and his result was 28, he was solidly positive.  This is probably why he considered the biopsy unnecessary (an advanced thinker :P ) and sent you straight to the nutritionist.  I assume he did pronounce that your son was a celiac?

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Doctors do have this "flashing" habit, if they bother at all.  Most of the time they just TELL you.  It is always a good idea to have your own copies of results for reference down the line.  I get copies of all mine, and of consultant's reports.  You really need to know what they're saying and doing.

 

That being said, most likely the first test was the total serum IgA which would probably have numbers in that range for a six-year-old - normal IgA falling anywhere within the stated range up to 180 something.  The other test was probably the doctors' favorite, the tTG (tissue transglutaminase), and if the range only went to 14 and his result was 28, he was solidly positive.  This is probably why he considered the biopsy unnecessary (an advanced thinker :P ) and sent you straight to the nutritionist.  I assume he did pronounce that your son was a celiac?

My son has had this large belly pretty much since he was a baby, we always asked if it was normal and was told yes.  We finally got them to do an ultra sound and the person doing it said its hard to see hes so full of gas.    So then the dr calls with results from that saying t showed an enlarged spleen so they wanted to do blood tests, they did a bucnh of different tests which all came back nagative except for celiac ones.

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Welcome to the club no one expected to join :)

 

There's a lot of reading on here which you should find helpful, starting with the Newbie 101 thread.  Here you will find where gluten lurks and how to ferret it out and keep your son safe.  Read as much as you can, and as questions arise, don't be afraid to ask them.

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Thanks for your help, my youngest needs to be tested on Tuesday just in case/  Should as as parents be tested as well? I have heard its genetic?

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Yes, all first degree relatives should be tested.

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Yes, all first degree relatives should be tested.

everything ive read says dont start gluten free untill they do a biopsy but they said we should start it now.  Is that right? Dr tried to say we can start eating gluten again 3 days before the biopsy and it will show up on the Biopsy?         From what ive read that dont sound right. Any idea if the spleen has any connection to celiac?

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everything ive read says dont start gluten free untill they do a biopsy but they said we should start it now.  Is that right? Dr tried to say we can start eating gluten again 3 days before the biopsy and it will show up on the Biopsy?         From what ive read that dont sound right. Any idea if the spleen has any connection to celiac?

 The biopsy shows the damage so as long as he hasn't healed completely it should show up... I think your doctor could be taking a risk with telling you to stop eating gluten now and then restart it 3 days before the biopsy unless the biopsy is in the next couple of weeks. As long as he is handling the effects of gluten okay, I would try to keep him on some gluten until as close to the test as possible.

 

The spleen does have a connection to to celiac disease but I'm not sure if it's exact link.  I do know that a celiac's spleen often does not work as well as a regular person's spleen but i'm unsure if it's because of an autoimmune attack on the spleen (celiac can attack anything from the gut, to joints, nerves, the gall bladder, and the skin) or if it's because the spleen is working extra hard to clear out parts in the blood that it feels is "the enemy" (ie. gluten).

 

A spleen gets enlarged when it's fighting germs, mounting an autoimmune attack, or with cancer. Please don't jump to that final conclusion though. An enlarged spleen is not that unusual, and I'm sure your doctors checked for cancer right away. They knew there was a link to celiac (to an enlarged spleen) and that's probably why they ran the test.  :)

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A little history about my son. He has had a rough go off it since birth

 

Had a rough delivery for him and my wife. They had to use the vacuum like 4 times to suck him out he stopped breathing for a bit once the cord was cut.   Had alot of ear infections ended up with 3 sets of ear tubes and tonsils and adnoids out. Still has alot of sinus infections.

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 The biopsy shows the damage so as long as he hasn't healed completely it should show up... I think your doctor could be taking a risk with telling you to stop eating gluten now and then restart it 3 days before the biopsy unless the biopsy is in the next couple of weeks. As long as he is handling the effects of gluten okay, I would try to keep him on some gluten until as close to the test as possible.

 

The spleen does have a connection to to celiac disease but I'm not sure if it's exact link.  I do know that a celiac's spleen often does not work as well as a regular person's spleen but i'm unsure if it's because of an autoimmune attack on the spleen (celiac can attack anything from the gut, to joints, nerves, the gall bladder, and the skin) or if it's because the spleen is working extra hard to clear out parts in the blood that it feels is "the enemy" (ie. gluten).

 

A spleen gets enlarged when it's fighting germs, mounting an autoimmune attack, or with cancer. Please don't jump to that final conclusion though. An enlarged spleen is not that unusual, and I'm sure your doctors checked for cancer right away. They knew there was a link to celiac (to an enlarged spleen) and that's probably why they ran the test.  :)

The dr talked to a hematologist or something like that and they told him to due cat scan of the spleen. Dr said that was before they found out it was celiac so we will just ultra sound the spleen in 3 months and look at it then.

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just called my doctor to get set up for my blood test. Of course they couldnt just set it up so i could go to the lab and have it done, i first need an appointment so they then can set it up.

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just called my doctor to get set up for my blood test. Of course they couldnt just set it up so i could go to the lab and have it done, i first need an appointment so they then can set it up.

of course that is a bunch of...organic fertilizer...just to generate income.

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see his GI yesterday his ttg level was 28 the normal range is 1-14. She said most likely it was caught fairly early as she has seen that number in the 100's on some people. She is setting up a Gi scope and said if they find something that take him off gluten then, if not then do a 3 month trial without glutten, if he starts feeling better than keep him off it, if ni changes give him gluten again and then they would restest his ttg level to see if its gotten any worse.

 

What i dont get is if it was caught early why has he always had this distended belly and full of gas?          She is also going to test for lactose intollerant when she does the biopsy

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It probably was not caught that early, he just had a blood sample taken where the numbers weren't that high. There are quite a few celiacs who have completely negative blood tests and are diagnosed on biopsy alone.

I personally do not think it's how positive a test is, I think the important point is that it is positive.

Hope he feels better soon.

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They will be doing the biopsy in 2 weeks.   How long after does it usually take to get the results.     What sucks for us is it is a 4-5 hour drive.

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i had by blood test done today, i go back for the results on the 14th.

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my youngest blood test game back within normal ranges.   Monday my son will have his biopsy. then that friday i will get my blood test results

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He had his scope yesterday,The doctor said nothing looked abnormal to the naked eye which it never does. She said she took a bunch of samples and would hgave the results in a week.

 

We asked if he should stop eating gluten now and she said she would just wait till after the results t ogive him another week of normalcy.

 

Ok so what if the blood test came back as postive and the biopsy comes back normal?      Does that mean he doesnt have celiacs and we dont need to do gluten free?

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Ok so what if the blood test came back as postive and the biopsy comes back normal?      Does that mean he doesnt have celiacs and we dont need to do gluten free?

 

That happens more frequent than you would think. If the damage is patchy, it means that the doctors missed the damaged parts in the biopsy.

 

I can't remember if he had any other blood tests beyond the ttg (IgA?)? If the biopsy is normal, I would really push to get the complete blood panel done before he goes gluten-free so he won't have to go back onto gluten if he is doing well on the diet.

 

When he does his gluten-free trial, consider trying it for longer than 3 months. Some symptoms will resolve almost immediately but others take months and months. I noticed improvements at 6 months into the gluten-free diet, and others have said that they didn't feel really good until after a year had gone by.

 

Good luck!

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when we first saw her she told us this

 

if they find something that take him off gluten then, if not then do a 3 month trial without glutten, if he starts feeling better than keep him off it, if ni changes give him gluten again and then they would restest his ttg level to see if its gotten any worse.

We almost hope it shows something as it will be a definate answer and we can work on fixing it

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they only did the ttg test and another one,

 

TTg was 28 out of a 1-14 scale

 

I am not sure what the other one was but that came in as normal range

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I agree with Nicole -- have them run a complete celiac antibody panel:

 

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

along with nutrient blood tests:

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc.

 

If he hasn't had a CBC (Complete Blood Count) or CMP (Complete Metabolic Panel) add those in as well.

 

Nicole is also right that the damage can be spotty and if the GI doesn't have specific Celiac biopsy experience the results are not as good as they can be -- that being said people can have a very experienced celiac specialist take the samples and still end up with negative pathology -- especially kids as the damage is often not as severe as folks that go years without diagnosis.

 

After all that is complete - I agree that it is time to remove gluten for at least 3-6 months to watch for symptom improvement.

 

Welcome to the forum....take a look at the "Newbie 101" thread and let us know if you have any questions :)

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