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Dgp Question....
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We got results of my 12-yr-old daughter's blood work today. Everything was in the normal ranges except for the DGP, which was 37 units (<20 antibody not detected)(>or=20 antibody detected). Her CBC showed no abnormalities or deficiencies, so the doctor said he recommends eating gluten-free, but he will not diagnose her with celiac. He believes that she does not have full-blown celiac disease since there is no indication of malabsorption. Since the DGP is so specific, is it enough to go on to diagnose? Or is an endoscopy required as well?

I originally took her in because I suspected spots on her legs to be DH. They could not do a biopsy on the day we were there because of scheduling, so we set it up for today. Of course, the lesions healed beyond the point of getting a positive result (on adjacent skin), so I cancelled the biopsy. With no DH and no endoscopy, but a positive DGP, is the doc correct in NOT diagnosing her?

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It is my personal opinion that he should do the endoscopy with a positive DGP, even with normal bloodwork and tTG. The DGP is very specific for celiac disease (i.e., nothing else that we know of elevates it, unlike the tTG). Dr. Rodney Ford (world eminent pediatric GI - here in Christchurch) believes that every child who has an elevated DGP will eventually develop celiac, whether or not they actually have it at the time of testing. I heard him speak on this subject about a family with one child with celiac and two with elevated DGP but negative biopsies. Within two years, both these other two children had celiac disease. So it is possible that the endoscopy would not turn up positive either, but I think it should enter into the picture. Many celiacs with negative tTG's have tested positive on biopsy.

So to answer your other question, if your doctor does not plan to follow up on this result, I would either wait until she has an active skin lesion and get it biopsied, or take her straight gluten free. I personally do not believe it is worth continuing to give her rat poison so the doctor can become convinced. He was supposed to pay for his own education :P Not all doctors are Dr. Rodney Ford :(

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She may not have the worst symptoms of celiac disease yet, but that doesn't mean she wouldn't develop worsening symptoms over time if she continues to eat gluten. Her doctor isn't thinking quite right. He needs to consider the idea of preventative care once in awhile. Does he take his car to the shop when the check engine light comes on? Or wait until the engine falls out before talking to a mechanic? Grrr is a legal word here, so Grrr!

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I was diagnosed with just blood work so I'm biased on simply accepting a positive blood test as indicating celiac. Those DGP tests are fairly specific to celiac disease as far as I know.

If the doctor is implying that her disease hasn't progressed much yet, then great! Although I have no idea how he can tell that from the blood work.... either way, she should go gluten-free once her testing is complete. Good luck.

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I just excerpted this for another poster, so thought I would pop it in here, too. :)

http://drrodneyford.com/extra/documents/279-gliadin-antibody-confusion-same-name-different-test.html

The old gliadin test. In the 1990s, the gliadin antibody test was developed. Although most celiacs had a positive IgG-gliadin antibody test, high levels of this antibody were found in about 10% of the normal population. Consequently, gliadin testing was considered non-specific” from the point of view of diagnosing celiac disease. Mistakenly, this led to IgG-gliadin being maligned as a useless and non-specific test .

Gluten sensitivity. The reality, however, is that an elevated IgG-gliadin antibody specifically means that the person is immunologically reacting to gluten. International research, including my own, has demonstrated that high gliadin anybody levels are frequently associated with clinical disease without the gut damage of celiac disease. This is now known as non-celiac gluten sensitivity, or the gluten syndrome.

Because of the poor predictive value of IgG-gliadin antibodies to detect celiac disease, this old gliadin test has been widely abandoned in the medical community – to the extent that most laboratories do not offer to do this test. But this is about to change.

DGP. This new deamidated gliadin peptide (DGP) antibody is the next big step along the journey. It is more sensitive and specific than EMA or tTG for the diagnosis of celiac disease. Unfortunately, its name is now being confused with the early old gliadin test.

Nicknames

Shortening names is universal, we call these nicknames. Whenever I am in Australia, I introduce myself as Rodney, but my friends call me Rod .

The same name strategy is being used for the DGP test. Instead of its full name, it has been shortened to the gliadin test – the identical name for the old gliadin test. But they test for very different things:

The new DGP gliadin test accurately indicates the gut damage of celiac disease.

The old IgG-gliadin antibody test indicates immunological reaction to gluten, and can help diagnose the gluten syndrome.

This is how to interpret what these gliadin antibodies mean:

A positive old test (IgG-gliadin antibody) usually means gluten sensitivity.

A positive new test (DGP-IgG and DGP-IgA) means celiac disease.

A negative old test usually means that gluten is unlikely to be a problem.

A negative new test means that celiac disease is unlikely at the time of the test, but it does not rule out gluten sensitivity.

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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