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

Dgp


cmc811

Recommended Posts

cmc811 Apprentice

I have FINALLY found a doctor that was willing to order this test for my 6 yr old son after the TTG-IgA and EMA were negative. I have Celiac and he has symptoms so this is a test I've been trying to get ordered for over a year....

 

Anyway, since my diagnosis in March we are a gluten free household. My 6 yr old does get a bit of gluten everyday outside of the house (daycare, school, etc) but will that be enough for an accurate DGP test? I guess my concern is that it's such a small amount each day. After the work I've put in just to get this test ordered I want an accurate result!


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

For testing to be accurate they typically recommend eating gluten daily for at least 6-8 weeks before a test.

nvsmom Community Regular

I often see 8 weeks as the minimum and as long as 12+weeks with 1-2 slices of bread per day (I would round down for a child) as the suggested gluten challenge.  The DGP tests tend to change (ei. become negative on a gluten-free diet) faster than the tTG tests do so I would make sure gluten is eaten every day if you can - better safe than sorry.

 

Make sure the docs run both the DGP IgA and DGP IgG.  Good luck!

cmc811 Apprentice

Just want to clarify that he has NOT been gluten free at any point. I've seen the everyday consumption for 8 weeks recommendation but that was for someone who was completely gluten-free. Since my son has had gluten on an almost daily basis, just in small amounts, would we need to wait that long? I've been making sure he a good serving of gluten every day  this week. If I continue for 1 more week and get the lab drawn next Friday, would that be good? Ideally I would like the result by Monday, 12/29 for an appt we have. If it's negative though, I don't want to be second guessing whether the result is accurate or not...

cyclinglady Grand Master

What is your definition of "small amounts, almost daily"?

When I had my kid tested I gave her noodles, bread, cakes, crackers everyday in her lunch and added a few gluten dinners outside of the house for two months to insure an accurate result. She tested negative on the complete celiac panel and a CBC was ordered since anemia was my main symptom.

cmc811 Apprentice

He eats breakfast at daycare and almost everyday it is something with gluten in it (pancakes, toast, cereal, etc). I also send prepackaged gluten containing items like crackers a few times a week in his lunch. On the weekends he may not have any gluten at all though if we are home all weekend.

 

I say small amounts mostly to be conservative because I don't watch him eat these things since it's away from home. I don't know how much of the pack of goldfish he eats before he throws it away. I do know he eats a ton of breakfast at daycare though. They've commented several times about how much he eats compared to the other kids.

nvsmom Community Regular

That's probably enough, but there is no way to be sure. It sounds like he is close to a slice of bread per day. Perhaps up his intake just a bit, it's not hard with Xmas baking around, and make sure it is daily (if possible).


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



Celiac.com Sponsor (A8-M):



cmc811 Apprentice

Thanks!

 

Follow up question: if this test is negative, along with the tTg-IgA and EMA he has already had done (IgA was sufficient) would you do the biopsy anyway? GI said that would be the next step but I just don't know if it is worth doing. I know if I just trial a gluten-free diet and he's better I'll never really have a diagnosis for him but at the same time even if we do the biopsy we could end up in the same spot if it's negative. Either way I plan on trialing a gluten-free diet unless the dr has some miracle discovery between now and his next appt to explain his symptoms.

nvsmom Community Regular

It really is up to you.  Many parents find it helpful to have a diagnosis to keep the child gluten-free.  Apparently schools often respond better to a diagnosis rather than  just a parent's word about the matter. I haven't had that experience but I am in Canada so perhaps it is different (my kids are gluten-free without a diagnosis).

 

There are some around here who had a positive biopsy with negative tests but there are not too many... It can happen.

cmc811 Apprentice

Yeah, ideally I want a diagnosis for him, but I understand that he may have to suffer for years before a test finally comes up positive and I'm just not willing to let that happen. We'll see how the DGP tests turn out and go from there I guess!

nvsmom Community Regular

Hang in there. Celiac limbo really is a world to develop patience in... darn it.  ;)

  • 2 weeks later...
cmc811 Apprentice

So DGP result in and negative.

 

DGP-IgA - Result 8 - Negative is <20

DGP-IgG - Result 4 - Negative is <20

 

Earlier in the year he had a negative tTg-IgA and EMA, so at this time it seems unlikely we're dealing with Celiac Disease.

 

He did have an elevated ESR and he is severely constipated.....not sure what to do next. Doctors just seem to want him on Miralax forever instead of figuring out the root cause....grrrr!

 

May try eliminating gluten anyway to see if we see improvement. That and dairy. Any other suggestions?

nvsmom Community Regular

Going gluten-free is a good idea. Non-celiac gluten sensitivity (NCGS) is much more common than celiac disease but has most of the same symptoms, and they aren't all GI related.  Give the diet at least 3-6 months before you decide on it's effectiveness; some symptoms are slower than others to improve.  A food and symptom journal is a good way to track slow changes.

 

Best wishes.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

    2. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    3. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    5. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,958
    • Most Online (within 30 mins)
      7,748

    DLA
    Newest Member
    DLA
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  
    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
×
×
  • 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.