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
carecare
Posted

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
mushroom
Posted

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

The Horticulturalist Apprentice
The Horticulturalist
Posted

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
gfcolorado
Posted

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
carecare
Posted
  • Author

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
Skylark
Posted

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
Di2011
Posted

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
gfcolorado
Posted

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
carecare
Posted
  • Author

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
Skylark
Posted

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

  • 10 months later...
gfcolorado Newbie
gfcolorado
Posted

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
vtphd
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.