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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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MaggieK

Positive Ttg, Negative Ema 6 Year Old

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Hi,

I recently brought my 6 year old to the doctor because of ongoing complaints about stomach pain. He ordered a variety of labs, including some celiac labs. The only labs that were off were a low WBC (around 2) and his ttg, which was 9 with a reference range of <4 negative, 4-10 weak positive and >10 positive. His ema was negative.

We are scheduling an appointment with a pediatric gi, but I guess I'm just wondering of any chance of this being a false positive or any other reason this would be elevated that isn't celiac. I know ttg can also indicate type 1 dm, but he has no diabetic symptoms and his metabolic panel came back fine.

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Welcome to the board. :)

 

According to the World Gastroenterology's guidelines on celiac disease, the tTG IgA test is pretty specific to celiac disease; I believe it is between 91-99% specific to celiac disease meaning that out of 100 positive tests, 91 to 99 of them are due to celiac disease. A positive tTG IgA can indicate dm but it can also point at a serious GI infection or thyroid issues (rarely). In most cases, a positive tTG IgA will indicate celiac disease though.

Here is the report. Tests are discussed starting around p 11.  http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

False positives are virtually unheard of. A positive test means autoantibodies are elevevated. It is debateable whether it is caused by celiac but with stomach pain symptoms, a positive test, and the absence of an infection, it unfortunately is probably celiac disease.  :(

 

EMA tests are often negative in young children, and in early cases of celiac disease. Not many children have a positive test.

 

Did they run any other blood tests? This is the full celiac panel:

tTG IgA and tTG IgG

EMA IgA

total serum IgA

DGP IgA and DGP IgG

AGA IgA and AGA IgG (these are older and less reliable tests)

 

The DGP tests are thought to be very accurate for children, and the DGP IgG is extremely specific to celiac disease. If that test wasn't run, you might want to request it.

 

Chances are the ped. GI will want to do an endoscopic biopsy or retest your son's labs (request the full panel). You'll want to make sure your son is still consuming gluten so the tests are accurate. If he is feeling a lot of pain, perhaps try giving him gluten for his bedtime snack/meal so he can sleep through the discomfort.  :(

 

Best wishes. I hope you find your answers soon.

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Thank you so much for all that info. I'm of course hoping that for some reason the test was wrong and he doesnt have it, but it's so helpful to prepare myself for the very real possibility.

We see the GI doc soon, which will be helpful. Luckily his symptoms are not very extreme so it's not a problem to let him have gluten until testing is finalized. He loves pasta so much so taking it away is going to be quite an ordeal anyway.

Again, thanks for taking the time to answer.

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The low white cell count is common for those with autoimmune disorders. I know because I have had life long low WBC's. That is not a problem as long as a poerson isn't getting sick all the time. 

 

You have to sustain a lot of damage to the small intestine before you trip the EMA.  This is why kids rarely come up with a positive....it's more normally seen in adults who go years without a diagnosis.  I had a positive EMA but my gut was totally trashed by then.  You do not want this to happen to your son.

 

As far as pasta is concerned, there is no need to worry about taking away pasta.There is some phenomenal gluten-free pasta out there now and I doubt your son will be able to tell the difference...that's how good it is.  If you need the names after he is diagnosed, then let me know and I'll help you out with that!  :)

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Welcome, Maggie  :)

 

can you see if you are able to get the DGP iga/igg combo?

 

here are some pub med abstracts about the DGP igg test in a pediatric population:

http://www.ncbi.nlm.nih.gov/pubmed/22197936

http://www.ncbi.nlm.nih.gov/pubmed/21942854

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Welcome, Maggie  :)

 

can you see if you are able to get the DGP iga/igg combo?

 

The low white cell count is common for those with autoimmune disorders. I know because I have had life long low WBC's. That is not a problem as long as a poerson isn't getting sick all the time. 

 

You have to sustain a lot of damage to the small intestine before you trip the EMA.  This is why kids rarely come up with a positive....it's more normally seen in adults who go years without a diagnosis.  I had a positive EMA but my gut was totally trashed by then.  You do not want this to happen to your son.

 

As far as pasta is concerned, there is no need to worry about taking away pasta.There is some phenomenal gluten-free pasta out there now and I doubt your son will be able to tell the difference...that's how good it is.  If you need the names after he is diagnosed, then let me know and I'll help you out with that!  :)

  

Thank you for the info. He's a super healthy kid, so if the WBCs are chronic it's not really affecting him. And yes, I will need pasta recommendations because I've always heard the gluten free stuff isnt good. That would be a huge relief!

Welcome, Maggie  :)

 

can you see if you are able to get the DGP iga/igg combo?

 

here are some pub med abstracts about the DGP igg test in a pediatric population:

http://www.ncbi.nlm.nih.gov/pubmed/22197936

http://www.ncbi.nlm.nih.gov/pubmed/21942854

Thanks for those links. I'll definitley ask about that at our appt.

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Thank you for the info. He's a super healthy kid, so if the WBCs are chronic it's not really affecting him. And yes, I will need pasta recommendations because I've always heard the gluten free stuff isnt good. That would be a huge relief!

Thanks for those links. I'll definitley ask about that at our appt.

I am never sick, either and my WBC's are always around the low 2's.  I used to get sick constantly, pre-Celiac diagnosis but no more!

 

Oh....I can hook you up with some phenomenal pasta.  My husband loves it and he is a true pasta lover.  You may have to get used to ordering pasta on-line to get the good stuff but I have a contact in NY, an Italian man who runs an import business, and he imports gluten-free pasta directly from Italy.  It has come down substantally in price from when I started ordering it 8 years ago.  I order a good amount and then don't have to worry about it for awhile.  I don't eat that much pasta but when I make a fresh pot of sauce, it's good to have!  You may be able to find the brands I like locally but I have not found that to be true for me.  It's just easier to order on-line and have it shipped to me.  And you are correct....some of the pasta is horrible but that's true of anything....even gluten food. 

 

Let me know if I can be of help!

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An update, in case anyone is in a similar situation later:

I really liked the GI doc we saw. He was quite thorough and had a good repoire with my son. The plan is to repeat the ttg, and CBC, and also check the dgp. He is also going to have a abdominal X-ray, and then if the ttg or dgp is positive again we will schedule a egd.

So we wait and see.

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Update, for those googling! We had the repeat labs, they came back pretty much the same (with the exception of the WBCs) coming back normal. He had the biopsy, and it came back positive. So we officially have a diagnosis.

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Thanks for the update! When we were in the testing phase, it was always so helpful to find threads where people came back and posted the outcome later.

 

I hope your son heals up quick and starts feeling better soon!

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Update, for those googling! We had the repeat labs, they came back pretty much the same (with the exception of the WBCs) coming back normal. He had the biopsy, and it came back positive. So we officially have a diagnosis.

thank you so much for updating. My daughter has tested positive on her blood and we see the GI doctor next week and now I know what other questions I should be asking.

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