Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Conflicting Test Results--What Do I Do Now


  • Please log in to reply

10 replies to this topic

#1 bobtom

 
bobtom

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 25 October 2012 - 07:50 AM

My 11 year old son with history of mild to sometimes moderate stomach aches, off and on for about a year now, had deamidated gliadin iga level of 67 (>20 positive). Was sent to GI doc and he drew ttg iga which was negative. He ruled out Celiac. Why is one test positive and the next negative? Where do I go from here? Thank you!!
  • 0

Celiac.com Sponsor:

#2 shadowicewolf

 
shadowicewolf

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,768 posts
 

Posted 25 October 2012 - 08:09 AM

We all test different and not all doctors are educated as they should be on celiac (its annoying). Imo, if his blood test came back positive like that, I'd consider it positive. However, if you wished and if he is still on a gluteny diet, they perhaps a biopsy would be useful.
  • 0

#3 SMDBill

 
SMDBill

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 104 posts
 

Posted 25 October 2012 - 08:11 AM

Blood tests are known to be sometimes inconclusive or incorrect. Biopsies will support the case. The true test would be how he feels if he is gluten-free. Going gluten-free after a negative diagnosis sure can't hurt, especially if you only try it for a short time (weeks/months). I felt changes after only 2 days and my life was changed. You may get different results, but if the doc doesn't do more testing I'd suggest finding a second opinion. From what I've learned I don't think anyone can rule out celiac without biopsies in addition to the blood tests. If you still don't get the answers and suspect celiac, try gluten-free and if he improves, there's your answer.
  • 0

#4 guest134

 
guest134

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 25 October 2012 - 08:18 AM

The deamidated gliadin is an antibody created in reaction to gluten, it is SUPPOSE to be very specific for celiac. I say suppose because it only came into play in 2008 and there are still many studies being done on it. However it is very likely that your son is having reactions to gluten with a level that high.

The TTG IgA looks for damage in the small intestine, perhaps your son is reacting to gluten but has not yet received substantial damage in his intestines to show up on the test?

With a DGP that high I would look for a second opinion, I really think you may be onto the diagnosis of celiacs, you don't want to wait until your son gets worse to look into it. Some doctors won't do anything until you are obviously being destroyed by the disease, members on this forum want early detection so that people like your son do not have to go through the horrible years of symptoms many of our members had to get diagnosed. Also early detection will prevent further development of other autoimmune diseases such as Hashimoto's Disease. Not to mention that your son's growth can be hindered if he has celiac and it goes ignored.

You need a to get the entire celiac panel done, here it is:
Deamidated gliadin IgG
Deamidated gliadin IgA
Ttg IgA
Endomysial Ab
Total serum IgA

The first two are the bodies reaction to gluten, the second two are markers of damage in the intestine. The last test is used to rule out false positives on the IgA scale.

Question- Did your doctor rule out celiac just because the TTG was negative or was there more to it? If he ruled it out because of a negative TTG I wonder how he even obtained his medical license let alone a specialist one.
  • 0

#5 bobtom

 
bobtom

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 25 October 2012 - 08:52 AM

The deamidated gliadin is an antibody created in reaction to gluten, it is SUPPOSE to be very specific for celiac. I say suppose because it only came into play in 2008 and there are still many studies being done on it. However it is very likely that your son is having reactions to gluten with a level that high.

The TTG IgA looks for damage in the small intestine, perhaps your son is reacting to gluten but has not yet received substantial damage in his intestines to show up on the test?

With a DGP that high I would look for a second opinion, I really think you may be onto the diagnosis of celiacs, you don't want to wait until your son gets worse to look into it. Some doctors won't do anything until you are obviously being destroyed by the disease, members on this forum want early detection so that people like your son do not have to go through the horrible years of symptoms many of our members had to get diagnosed. Also early detection will prevent further development of other autoimmune diseases such as Hashimoto's Disease. Not to mention that your son's growth can be hindered if he has celiac and it goes ignored.

You need a to get the entire celiac panel done, here it is:
Deamidated gliadin IgG
Deamidated gliadin IgA
Ttg IgA
Endomysial Ab
Total serum IgA

The first two are the bodies reaction to gluten, the second two are markers of damage in the intestine. The last test is used to rule out false positives on the IgA scale.

Question- Did your doctor rule out celiac just because the TTG was negative or was there more to it? If he ruled it out because of a negative TTG I wonder how he even obtained his medical license let alone a specialist one.




Yes, the doctor ruled it out based on the ttg. He said the gliadin test isn't very reliable. My son's total IGA was normal, so he is not IGA deficient. The doc said we don't have to test further because the ttg was negative. From everthing I have read, I'm wondering if I should ask for and endoscopy. Has anyone else had conflicting results like that?
  • 0

#6 bobtom

 
bobtom

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 25 October 2012 - 08:57 AM

Yes, he ruled it out based on the negative ttg. My son had a total IGA drawn at the same time which was normal so he isn't deficient. Has anyone else had conflicting results like this ? The doc said the gliadin test isn't very reliable. I did tell him it was the deamidated because I believe that makes a big difference (my son's regular ped drew had that drawn just based on his symptoms)
  • 0

#7 guest134

 
guest134

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 188 posts
 

Posted 25 October 2012 - 09:34 AM

Yes, he ruled it out based on the negative ttg. My son had a total IGA drawn at the same time which was normal so he isn't deficient. Has anyone else had conflicting results like this ? The doc said the gliadin test isn't very reliable. I did tell him it was the deamidated because I believe that makes a big difference (my son's regular ped drew had that drawn just based on his symptoms)


The gastro is talking about the older tests, yes the DGP is not 100 percent accurate but with levels that high I would look further. The issue is that many of these tests can be elevated in other conditions, I currently have a positive TTG after gastroenteritis.

What you are going to learn here is that celiac is not very easy to diagnose unless the person is obviously getting sick after eating gluten. I am really stumped that he would have such a high DGP and no TTG, maybe a false negative on the TTG? The problem with this is that we are dealing with an 11 year old and obviously don't want to put him through a biopsy unless absolutely necessary. I would recommend shopping around for a knowledgeable doctor on celiacs and redoing the entire celiac panel including the endomysial antibody to get a better picture.

I know your feel though, I am not diagnosed, just have had some weird blood tests since my salmonella infection and the doctors are trying to figure out what is wrong. Very frustrating. Great people on this forum and we are here for you when you need anything.
  • 0

#8 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 25 October 2012 - 09:38 AM

http://www.celiac.co...__1#entry822385

Welcome Back!

My answer remains the same as in the above post with the following addition:

If your son's GI is dismissing the firmly positive DGP IgA without a complete celiac blood panel, refusing the need for a biopsy and providing no alternate reason for the positive DGP - it is time to look for another doctor. I'd highly suggest you look for a Gastroenterologist that has both training and experience in Celiac Disease.

If I am reading your posts correctly - your son still has not had the following celiac testing:

tTG IgG
DGP IgG

...it wouldn't hurt to get the entire panel drawn again along with nutrient testing (to uncover possible malabsorption issues) if it has not done to compare with his previous numbers.

your list would then be:

Total Serum IgA
tTG IgA
tTG IgG
EMA IgA
DGP IgA
DGP IgG

I would add AGA - both IgA and IgG

B12, D, K, Iron, Ferritin, Copper and Zinc

If you are not wanting an endoscopy - have the blood drawn one more time (his primary can order these tests) and then remove ALL gluten from his diet and watch for symptom resolution.
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 Cara in Boston

 
Cara in Boston

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 649 posts
 

Posted 25 October 2012 - 10:19 AM

The whole purpose of having a blood test panel is becaue everyone's immune system is different. With several tests given, if even one is positive, you should consider that celiac is likely. What was your doctors explanation for the positive test?

We had a similar situation. My son (5 at the time) got the blood panel. All the IgA tests were normal, as was his total IgA. The IgG tests came back positive. He had no "classic" symptoms and seemed perfectly healthy. The GI we were sent to said he did NOT have celiac but couldn't explain the positive blood tests. He said if the TTG IgA wasn't positive, he did not have it. By this time, I had tested positive too, so it was too much of a coincidence for me to give up. We took him to the celiac clinic at Children's Hospital and they did a biopsy. He had severe damage. Glad I had read enough to know that the test results were not always clear and the doctors don't always know what they are talking about.

First, I would find a new doctor. The one you have clearly is not educated on the most current information regarding celiac disease. It looks like your son has it. The doctor you choose will be with you for a long time (nutrition, follow up care, etc.) You want to make sure it is a good match.

Second, request a endoscopy. Demand an endoscopy. With his symptoms and his very positive blood test you should plan on him being gluten free regardless of the biopsy results. BUT GET A DOCTOR WHO KNOWS HOW TO TO A CORRECT CELIAC BIOPSY.

Good luck - it is very frustrating. Trust your instincts.

Cara
  • 0

#10 bobtom

 
bobtom

    New Community Member

  • Advanced Members
  • Pip
  • 12 posts
 

Posted 25 October 2012 - 12:20 PM

Thank you for all the responses. We go back to see the GI in 2 weeks. I have been trying to do alot of research on the topic and do ask questions here because everyone seems so knowledgeable. I have been reading the testing "algorithms" from different studies and they all seem to say to draw the ttg first, then if that is positive, draw the deamidated gliadin. In my son's case, they drew the deamidated gliadin first which then led to the ttg testing. So I am wondering if that really matters at all (which is done first). If the doc would have just run the ttg first, then he wouldn't have looked any further and thus never knowing the deamidated gliadin was even high. Just some thoughts as I try to educate myself before we see him. If his AGA levels are normal, what does the igg levels show? Thanks again for all of your help :)
  • 0

#11 mushroom

 
mushroom

    Mushroom

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,448 posts
 

Posted 25 October 2012 - 12:31 PM

The AGA IgA and IgG are not used very much any more as they have mostly been replaced by the DGP in the panel, as being more reliable, but in the case of a "tie" they could be useful.

Celiac testing seems to work best (for the patient, at least :) ) if the entire panel is drawn at once; it is a greater lab expense, but a lesser doctor expense :P and gives a full snapshot of all the antibodies.

I would be in favor of an endoscopy to settle the issue of celiac or NCGI.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: