Persistent isolated high DGP-IGG in child despite gluten-free diet

[melthebell]

Hello community; it's nice to have found you.

I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic.

Given this, I regularly test my two children. My eldest is the child in question.

First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative.

Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes.

Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet.

Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet.

what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April.

Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms.

Has anyone encountered something like this before?

[trents]

Welcome to the celiac.com community, @melthebell!

I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent.

At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect. 

I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.

[melthebell]

2 hours ago, trents said:

Welcome to the celiac.com community, @melthebell!

I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent.

At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect. 

I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.

Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all. 

Will also run the HLA typing - I have the swabs ready to go.

[trents]

Like you, I was a silent celiac. I was largely asymptomatic insofar as GI symptoms were concerned. The first real evidence, retrospectively, of having celiac disease was the development of mildly but persistently elevated liver enzymes which initially was discovered when I tried to donate blood at age 37. That was in about 1987. Of course, my PCP checked me for all the hepatitis varieties but cold not find any reason for the elevated liver enzymes. I was also slipping into mild anemia by the time I was in my late 40's and had developed some occasional loose stool and oily stool. My PCP had no clue. I was really concerned about the liver enzymes as they were steadily increasing though never got to alarming levels. My PCP threw his hands up and said during one office visit, "I don't know why your enzymes are elevated. Maybe that's just the way your are." Well, that was not a satisfactory answer. This was about year 2000 and it was not well known that one of the atypical symptoms of celiac disease is elevated liver enzymes. In fact, it happens in about 18% of celiacs. Finally, I booked an appointment with a GI doc who tested me right away for celiac disease and I was positive, both for blood work and biopsy. Within a few months of eliminating gluten my liver enzymes had normalized. But it took 13 years to get a diagnosis. And by that time I had developed osteopenia.

Sorry for the long-winded story. My point is, celiac disease can be very slow in developing. By the time symptoms manifest themselves to the extent where they get your attention such that you seek testing, much damage can already be done to body systems. You and your son are very smart to be be pursuing this thing early in his life and let me encourage you, that whatever the next round of testing reveals, you continue to get testing done on a regular basis.

[Scott Adams]

Isolated DGP-IgG elevation can be tricky. In children who are not IgA deficient and who repeatedly have negative tTG-IgA and normal biopsies, DGP-IgG alone is not very specific for celiac disease. It can sometimes be elevated due to other immune activity, transient infections, lab variability, or even non-celiac inflammatory conditions. The fact that it has risen despite a gluten-free diet and without symptoms or growth issues makes true active celiac less straightforward. The pediatric GI’s plan for a supervised gluten challenge followed by endoscopy is reasonable, as it’s the only way to clarify whether this is evolving celiac or a persistent false positive. You’re doing the right thing by approaching this methodically rather than assuming the antibody alone equals disease.

[melthebell]

Thank you everyone for t

4 hours ago, trents said:

Like you, I was a silent celiac. I was largely asymptomatic insofar as GI symptoms were concerned. The first real evidence, retrospectively, of having celiac disease was the development of mildly but persistently elevated liver enzymes which initially was discovered when I tried to donate blood at age 37. That was in about 1987. Of course, my PCP checked me for all the hepatitis varieties but cold not find any reason for the elevated liver enzymes. I was also slipping into mild anemia by the time I was in my late 40's and had developed some occasional loose stool and oily stool. My PCP had no clue. I was really concerned about the liver enzymes as they were steadily increasing though never got to alarming levels. My PCP threw his hands up and said during one office visit, "I don't know why your enzymes are elevated. Maybe that's just the way your are." Well, that was not a satisfactory answer. This was about year 2000 and it was not well known that one of the atypical symptoms of celiac disease is elevated liver enzymes. In fact, it happens in about 18% of celiacs. Finally, I booked an appointment with a GI doc who tested me right away for celiac disease and I was positive, both for blood work and biopsy. Within a few months of eliminating gluten my liver enzymes had normalized. But it took 13 years to get a diagnosis. And by that time I had developed osteopenia.

Sorry for the long-winded story. My point is, celiac disease can be very slow in developing. By the time symptoms manifest themselves to the extent where they get your attention such that you seek testing, much damage can already be done to body systems. You and your son are very smart to be be pursuing this thing early in his life and let me encourage you, that whatever the next round of testing reveals, you continue to get testing done on a regular basis.

thank you for sharing your story. I’m borderline obsessive in making sure my kids get tested; my parents are convinced undiagnosed celiac in childhood stunted some of my growth and cause tooth enamel issues. 

We now embark on a gluten challenge which comes with its own problems and I know diagnosis after being gluten-free can be difficult to secure. But I will absolutely persevere. 

[melthebell]

2 hours ago, Scott Adams said:

Isolated DGP-IgG elevation can be tricky. In children who are not IgA deficient and who repeatedly have negative tTG-IgA and normal biopsies, DGP-IgG alone is not very specific for celiac disease. It can sometimes be elevated due to other immune activity, transient infections, lab variability, or even non-celiac inflammatory conditions. The fact that it has risen despite a gluten-free diet and without symptoms or growth issues makes true active celiac less straightforward. The pediatric GI’s plan for a supervised gluten challenge followed by endoscopy is reasonable, as it’s the only way to clarify whether this is evolving celiac or a persistent false positive. You’re doing the right thing by approaching this methodically rather than assuming the antibody alone equals disease.

Thanks very much for taking the time to write. I have been reading a lot about this and it definitely is not straight forward. My first port of call is the gene test - probably should have had it done before we left Australia because they don’t run the test in Japan. So I’ve ordered a third party test kit and just swabbed his cheek. Then we start the gluten challenge and see how it goes. 

[trents]

@melthebell, keep us posted. We are learning more and more about gluten disorders as time goes on. One of the things that has become apparent to me is that gluten disorders don't always like to fit into the neat little pigeon hole symptomatic and diagnostic paradigms we have created for them. There seems to be a lot more atypical stuff going on than we once realized.

[trents]

What is your plan for the gluten challenge?

[melthebell]

3 minutes ago, trents said:

What is your plan for the gluten challenge?

Will definitely keep you posted. We live in Japan and will fly to Australia for the endoscopy end of April so until then, for the next ten weeks, we will just start adding gluten daily. 2 slices of white bread a day is what the guidelines seem to say. 
 

But I welcome advice from members here who have done successful gluten challenges. I know they are not always successful. 
 

I have also read I should monitor his growth. Is that really a concern for 10 weeks of gluten consumption? He is growing and has always followed his curve but he’s no basketball player at 20-25th centile. 

[trents]

Most recent gluten challenge guidelines call for the consumption of at least 10g of gluten (about the amount in about 4-6 slices of wheat-based bread) for at least 2 weeks. 

When celiacs have been on gluten free diets for long periods of time, they often find that when they consume a good amount of gluten, they react much more strongly than they did before going gluten free. They have lost all tolerance to the poison they had when consuming wheat products regularly. That is certainly the case with me. A couple of years ago I accidentally consumed a wheat biscuit my wife had made thinking it was a gluten free one and it made me violently ill. So, I mention that as I don't know if your son has started the gluten challenge yet.

[melthebell]

6 hours ago, trents said:

Most recent gluten challenge guidelines call for the consumption of at least 10g of gluten (about the amount in about 4-6 slices of wheat-based bread) for at least 2 weeks. 

When celiacs have been on gluten free diets for long periods of time, they often find that when they consume a good amount of gluten, they react much more strongly than they did before going gluten free. They have lost all tolerance to the poison they had when consuming wheat products regularly. That is certainly the case with me. A couple of years ago I accidentally consumed a wheat biscuit my wife had made thinking it was a gluten free one and it made me violently ill. So, I mention that as I don't know if your son has started the gluten challenge yet.

That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\

[trents]

It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day.

I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.