Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

? I Got Answered Wasn't What I Expected....


carecare

Recommended Posts

carecare Enthusiast

I sent a question to the University of Chicago Celiac Disease Center on facebook regarding the DGP being elevated and what they thought that would mean if a child came back with a negative biopsy. I wanted to know if other tests were negative but the Deaminated gliadin IgG was flagged as HIGH and positive if that would possibly mean more of a gluten intolerance rather than celiac. I did not receive the answer I was asking for...but their response was a little surprising:

"DGP of the IgG type may be "falsely" positive, meaning they can be slightly elevated in people who do not have celiac. So, the biopsy (done after being on a gluten-containing diet for at least 12 weeks) becomes of paramount importance."

That was a first that I've read that the IgG could be falsely positive. Also, my son was not just slightly elevated...as the results, which told me it did not go to an endpoint or something like that, but was flagged as in the high range.

So I responded back asking what slightly elevated means in their eyes...and if they'd anwser my original question of "if the biopsy is negative could that possibly mean a gluten intolerance."


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

Do they have lilttle elves sitting their choosing answers out of a standard book? That's what it sounds like.....

The Horticulturalist Apprentice

I sent a question to the University of Chicago Celiac Disease Center on facebook regarding the DGP being elevated and what they thought that would mean if a child came back with a negative biopsy. I wanted to know if other tests were negative but the Deaminated gliadin IgG was flagged as HIGH and positive if that would possibly mean more of a gluten intolerance rather than celiac. I did not receive the answer I was asking for...but their response was a little surprising:

"DGP of the IgG type may be "falsely" positive, meaning they can be slightly elevated in people who do not have celiac. So, the biopsy (done after being on a gluten-containing diet for at least 12 weeks) becomes of paramount importance."

That was a first that I've read that the IgG could be falsely positive. Also, my son was not just slightly elevated...as the results, which told me it did not go to an endpoint or something like that, but was flagged as in the high range.

So I responded back asking what slightly elevated means in their eyes...and if they'd anwser my original question of "if the biopsy is negative could that possibly mean a gluten intolerance."

Don't have an answer really, just wondering it you had the Ttg and the EMA done as well for your son?

I take it from your post that your son did have a -ve biopsy and the postive bloods, or is this a hypothetical question?

I guess it's possible that the biopsy potentially missed any area of damage caused by celiac, do you know where the biopsies were taken and how many?

gfcolorado Newbie

I have tried to do a lot of research also on the DGP test. I was diagnosed with Celiac 3 years ago. I just went for a follow-up and my TTG, DGP IGG and EMA were negative but my DGP IGA was positive. I asked numerous people (my GI, Rodney Ford, manufacturers of the test, an allergist) and everyone's answers were different. Several (my GI and test manufacturer) felt that it wasn't from a one time recent accidental gluten exposure but rather continued daily exposure.

I decided to have an endoscopy just so I know what is really happening and because I've never had a follow-up. I will get the results hopefully this week and will post and let you know. Please let me know if you find additional info. Thanks!

carecare Enthusiast

My question was hypothetical because I was just curious. My son (just turned 12) and is getting an endoscopy in mid December. He did get a full celiac panel done...everything was negative except for the high DPG IgG. I'm happy to report that the doctor told me he would do 9+ biopsies of the small intestines because he is indeed looking for celiac...better than the 2 that the nurse originally told me. It's currently a loooong wait for that biopsy....he was gluten-free for almost 2 months and muscle pain free and canker sore free during that time...then the day after we started back on gluten so the biopsy would be accurate his symptoms came roaring back sooo much worse than before. He can't wait to become gluten-free for life once the biopsy is over with!

GFColorado...yes....report back and let us know how the biopsy turns out.

Oh...and funny...they couldn't answer my question right away because they said they would send it to their experts who answer these kinds of questions for them.

Skylark Collaborator

In the few studies who have followed folks with positive TTG, GI symptoms, but negative biopsy, the people tend to become celiac by biopsy in a few years. DGP-IgG is considered as good if not better than TTG IgA. I'm glad he will be going gluten-free.

Open Original Shared Link

Di2011 Enthusiast

I have tried to do a lot of research also on the DGP test. I was diagnosed with Celiac 3 years ago. I just went for a follow-up and my TTG, DGP IGG and EMA were negative but my DGP IGA was positive. I asked numerous people (my GI, Rodney Ford, manufacturers of the test, an allergist) and everyone's answers were different. Several (my GI and test manufacturer) felt that it wasn't from a one time recent accidental gluten exposure but rather continued daily exposure.

I decided to have an endoscopy just so I know what is really happening and because I've never had a follow-up. I will get the results hopefully this week and will post and let you know. Please let me know if you find additional info. Thanks!

Please let us know the result of the endoscopy.. lots of us will be interested


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfcolorado Newbie

Please let us know the result of the endoscopy.. lots of us will be interested

I will post as soon as I find out. My doctor did 12 biopsies so it should give a good picture of what's going on. This forum has been so helpful and glad I can provide info to help others. I think it's such a new test that there aren't all the answers we want.

  • 3 weeks later...
carecare Enthusiast

So either the University of Chicago Celiac people are flakes or they just misinterpreted my question. I asked about my son's deamidated IGg being strong positive and if they would think that would indicate more of an sensitivity/intolerance and not celiac if his biopsy was negative (which hasn't been done yet). I know I've read research saying it's very specific and highly indicative of celiac disease but curiosity got the better of me and I posted the question. The last response to me stated: "Elevated IgG (for tTG, I presume) are notoriously unspecific and should be simply disregarded."

Skylark Collaborator

Wow. They don't read very carefully, do they?

  • 10 months later...
gfcolorado Newbie

I will post as soon as I find out. My doctor did 12 biopsies so it should give a good picture of what's going on. This forum has been so helpful and glad I can provide info to help others. I think it's such a new test that there aren't all the answers we want.

I just realized I never wrote in with answers on my biopsy after testing positive for DGP IGA. It was negative. But, it's now a year later and I just did yearly bloodwork and my TTG IGA is still negative but DGP IGA is 31 (moderate to strong positive is 30+). I have no idea why this is. I have contacted several Celiac specialists in hopes of an answer.

vtphd Newbie

I just realized I never wrote in with answers on my biopsy after testing positive for DGP IGA. It was negative. But, it's now a year later and I just did yearly bloodwork and my TTG IGA is still negative but DGP IGA is 31 (moderate to strong positive is 30+). I have no idea why this is. I have contacted several Celiac specialists in hopes of an answer.

GfColorado, I also only have a positive IGA but mine is 20.9 (only .9) into the "equivocal" range.

What have the other people you've consulted said? Both my GI and my PCP say it does not mean I have Celiac...but maybe intolerance. They also claim false positives happen....

Immunoglobulin A -- 229 (range 68-378)

Endomysial IgA- negative

tTG-IgG Ab -- 3.9 (range under 20 negative)

tTG-IgA Ab -- 8.9 (range under 20 negative)

Gliadin Peptide Ab IgG --7.0 (range under 20 negative)

Gliadin Peptide Ab IgA -- 20.9 (range under 20 negative, 20-25 equivocal, 25+ positive)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

    2. - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    3. - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

    5. - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,854
    • Most Online (within 30 mins)
      7,748

    TDeb
    Newest Member
    TDeb
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.