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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dgp Question....
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5 posts in this topic

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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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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