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Positive Ttg, Negative Ema 6 Year Old


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#1 MaggieK

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Posted 05 June 2013 - 04:07 AM

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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#2 nvsmom

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Posted 05 June 2013 - 06:13 AM

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.worldgast..._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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#3 MaggieK

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Posted 05 June 2013 - 08:51 AM

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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#4 Gemini

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Posted 05 June 2013 - 11:45 AM

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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#5 powerofpositivethinking

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Posted 05 June 2013 - 04:51 PM

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....pubmed/22197936

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


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Diagnosed with celiac disease, fat malabsorption, severe pancreatic insufficiency (taking Creon) and vitamin K and D deficiency

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#6 MaggieK

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Posted 05 June 2013 - 05:03 PM

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....pubmed/22197936
http://www.ncbi.nlm....pubmed/21942854


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

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Posted 06 June 2013 - 06:42 AM

  

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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#8 MaggieK

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Posted 10 June 2013 - 05:58 PM

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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#9 MaggieK

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Posted 28 August 2013 - 05:04 PM

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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#10 nvsmom

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Posted 28 August 2013 - 08:39 PM

Glad you have answers!  :)


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#11 greenbeanie

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Posted 29 August 2013 - 07:38 AM

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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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#12 powerofpositivethinking

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Posted 30 August 2013 - 02:51 AM

Glad you got an answer!!!


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Diagnosed with celiac disease, fat malabsorption, severe pancreatic insufficiency (taking Creon) and vitamin K and D deficiency

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#13 MominSoCal

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Posted 13 September 2013 - 01:02 PM

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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