Help Understanding Blood Results

[karenlynn]

I'm completely overwhelmed trying to understand all of these tests/results and what the doctors are telling me. I really appreciate any help you can offer!

Two of my daughters are currently undergoing testing for celiacs.

My 2 year old is "failure to thrive". She's below the 3rd percentile in weight (she was 8lbs 12oz at birth), greasy and mucousy stools, alternating constipation and diarrhea, extremely distended abdomen with the skinniest little arms and legs, speech delay, extreme irritability, etc. Her celiac blood panel came back negative (actual numbers aren't listed on the lab work), her vitamin levels are all the lowest possible levels within the normal range (in other words, none are in the low range but they're JUST within normal), her alkaline phosphatase and white blood count were high (not extremely). She tested negative for cystic fibrosis. She is scheduled for an endoscopy and sigmoidoscopy in 2 weeks. Her GI said that the blood work is very unreliable in a child who has just recently turned 2 years old.

My 5 year old has been struggling with chronic constipation and UTIs. Over the last 2 years she has developed a rash that comes and goes (circles of what the doctor has diagnosed as eczema on the trunk of her body, arms, and knees). Over the last month she has begun complaining of severe abdominal pain. She will randomly begin to scream and clench her belly. The doctor said she was constipated and put her on miralax. After a month on miralax and her stools coming soft and regularly she is still complaining of abdominal pain. Now that she is no longer constipated we have noticed that her stools are a pale sort of yellow orange and they float. Her primary care doctor drew her blood last week and her DGP IgA was 4 (0-19 normal), her DGP IgG was 20 (0-19 normal), the endomysium titer was negative <1:10. I am still waiting (over a week) for the doctor to call me and explain the results, but the nurse said everything looks normal.

Everything I can find makes me think that the 5 year old's DGP IgG being high should warrant further investigation. I want to be prepared when the doctor calls in case he also tells me everything is normal. Is it likely that either of my children could have celiacs based on the results we've gotten thus far or does it seem unlikely?

I appreciate your thoughts and advice!

[nvsmom]

i think celiac disease could be a possibility for your family.    That DGP IgG test is very specific to celiac disease. If you look at Open Original Shared Link (on page 12) you can see that the specificity of the DGP IgG for celiac disease is 99-100%. That means that up to 1% of the time, at the most, a positive DGP IgG is caused by something other than celiac disease (a false positive).... celiac testing doesn't get any more specific. Granted, it's not a very strong positive result, but a positive is generally a positive, especially when accompanied by symptoms. KWIM?

 

I'm guessing that the doctor will want to repeat the tests and do an endoscopic biopsy.  Don't remove gluten from their diets until all testing is done.

 

I agree that tests run on toddlers can be less reliable. If doctors won't retest, you ma want to consider removing gluten from her diet too.

 

Good luck!

[karenlynn]

i think celiac disease could be a possibility for your family.    That DGP IgG test is very specific to celiac disease. If you look at Open Original Shared Link (on page 12) you can see that the specificity of the DGP IgG for celiac disease is 99-100%. That means that up to 1% of the time, at the most, a positive DGP IgG is caused by something other than celiac disease (a false positive).... celiac testing doesn't get any more specific. Granted, it's not a very strong positive result, but a positive is generally a positive, especially when accompanied by symptoms. KWIM?

 

I'm guessing that the doctor will want to repeat the tests and do an endoscopic biopsy.  Don't remove gluten from their diets until all testing is done.

 

I agree that tests run on toddlers can be less reliable. If doctors won't retest, you ma want to consider removing gluten from her diet too.

 

Good luck!

Thank you for your response! I agree that the literature seems to indicate that the likelihood is high that a positive DGP IgG is pretty reliable. I'm just anxious that the doctor won't agree to investigate any further because it was a weak positive, the other test was negative, and some of her symptoms aren't "classic" (such as the constipation instead of diarrhea). I'm going to bring a copy of that report with me when we speak with the doctor tomorrow. I wish they had done a total IgA so I knew whether or not to put much stock in the results of the DGP IgA.

[nvsmom]

You probably are right that the doctors will be reluctant to give a diagnosis on a "weak positive" with other negative tests.... It will really depend on your doctor and how up to date they are on that DGP test.

 

Even celiacs who have a fine total serum IgA level can have negative IgA based tests (tTG IgA, DGP IgA, EMA IgA) for unknown reasons, and vice versa. There are many board members around here who "failed" one celiac test only to be positive in another. IgA deficiency is more common among celiacs than in the regular population (about 5%) so requesting that test might be helpful in getting a diagnosis if she is deficient... Then again, if levels are normal, many doctors will discount the IgA based tests as not needed tests.

 

If the doctor will not diagnose her, or will do not further testing (biopsy), then you might want to jump straight to the gluten-free diet. Two of my three boys had signs of gluten intolerance when I was diagnosed. I had them tested for celiac disease but the only tests available to us were the tTG IgA and total serum IgA. The tests came back fine but I made them gluten-free anyways and they are doing much better but we'll never know if it is celiac disease or non-celiac gluten intolerance (NCGI) - I'm guessing celiac disease even though none of my kids are small or have D (neither did I).  Besides, keeping a gluten-free house seems easier to me than trying to keep food safe for the celiacs.

 

Have you and your spouse been checked for celiac disease too?

[karenlynn]

I definitely don't expect a diagnosis based solely on the results of the blood tests they ran. The doctor that ran the tests is her primary care so I'm not certain how well versed he is in celiac testing. We plan to go gluten free regardless of everyone's test results because I believe it's absolutely worth seeing what may or may not change on the gluten-free diet, but we're obviously staying "glutened" until we get through all the testing.

I had blood drawn today by my primary care doctor and should have the results at the end of the week. My 5 year old (who we've been discussing) is from my first marriage and her dad won't even discuss any of this with me. This is another reason why if she does have celiac disease it's crucial for her to be diagnosed. It will be nearly impossible to get her father to enforce the gluten-free diet during his visitation even with a firn diagnosis. If she's gluten sensitive and not celiac, he will not agree to her following the diet when she is with him. My 2 year old is from my current marriage and her dad (my husband) has a cousin who had celiac disease. My husband plans to get tested when we move this summer. He is in the military and if he is found to have celiac disease it's going to have a major impact on his career. It will be easier to wait until we finish this move before he opens that can of worms.

[nvsmom]

You know your stuff.   I'm sure you'll find answers.

 

The family situation is tough. There have been a number of people who have had a yough time with an ex-spouse following their child's diet. It's a real shame when a parent won't make the effort!  

 

If the doctor claims your 5 year old has NCGI (non-celiac gluten intolerance), be aware that the DGP is not thought to show NCGI... at all. The AGA tests are thought (by some) to show NCGI (in some) but even that is not widely accepted and may be incorrect. If he will do no more testing, get an official diagnosis of NCGI. The treatment is the same and symptoms are the same minus the villi damage. Perhaps that will be enough to satisfy your ex?

 

Good luck!

[karenlynn]

The primary care doctor said that a DGP IgG of 20 is nothing. He said that with celiacs they see numbers much higher than that. I asked him why her numbers were in the positive range if it isn't celiacs and he said he doesn't know. He out in a referral for the GI anyway, but he doesn't think anything will come of it. I do understand where he's coming from (it is a very weak positive), but I cannot find any literature anywhere that explains what else could be attributed to elevated DGP IgG. Any ideas? Everything seems to say that the DGP IgG levels do not in anyway indicate gluten sensitivity so why are the numbers above normal?

[nvsmom]

From what I have seen on this board, the "strength" of the positive test does not always directly correlate to the amount of damage found in the intestines. There are numerous people around here who had weak positives but extensive damage to their villi found during the endoscopic biopsy. The same thing is sometimes true of some people with negative blood tests, their intestines are a mess... I had a very weak positive pregnancy test once.   LOL As a general rule (I'm guessing 95% of the time like with a tTG IgA weak positive) a positive is a positive.

 

I don't have much info on the DGP IgG test.This is one site with info, but he's not a celiac expert: Open Original Shared Link

 

This one just restates that the DGP is a superior test for kids: Open Original Shared Link

 

This report shows that DGP may not be as specific to celiac disease in pediatric cases where celiac disease is suspected, but then it goes on to state that all control tests (where celiac disease was not suspected) were negative. It may not help you with the doctor, but I found it interesting.  Open Original Shared Link

 

Table 2 on this report is interesting. There are a few weak positives and negative who still biopsied positive.Also, Figure 1 shows how the DGP scores relates to Marsh score on the biopsy - higher damage is often seen with higher test scores... but not always.  Open Original Shared Link

 

This is a report on symptoms in celiac  children (not related to DGP testing but interesting) :  Open Original Shared Link

 

If I find something on false positives of the DGP IgG, I'll come back. In the meantime, perhaps start a new thread asking about  the likelihood, or causes, of false negative DGP IgG tests. You might get more answers with a new thread.

 

Best wishes.  

[karenlynn]

Thank you so much, Nicole! I'm sorry I didn't see this sooner! I really appreciate all of the articles! I'm going to begin a new thread, like you suggested. I have a few updates and other questions as well :-)

[Fenrir]

The primary care doctor said that a DGP IgG of 20 is nothing. He said that with celiacs they see numbers much higher than that. I asked him why her numbers were in the positive range if it isn't celiacs and he said he doesn't know. He out in a referral for the GI anyway, but he doesn't think anything will come of it. I do understand where he's coming from (it is a very weak positive), but I cannot find any literature anywhere that explains what else could be attributed to elevated DGP IgG. Any ideas? Everything seems to say that the DGP IgG levels do not in anyway indicate gluten sensitivity so why are the numbers above normal?

 

 

My antibody tests were very weak positive as well but the pathology said my biopsy showed celiac so clearly it took about a minute of looking to tell that.

 

I work in a medical lab and I can tell you that many doctors don't know how to read/use/understand labs that are outside the ones they typically order. Celiac testing isn't a common lab a family practice physician will order, a GI specialist will have a lot more experience with this sort of testing.  If people knew the questions we get in the lab from doctors about what lab test results mean they'd probably be mortified.

 

Like with most professions, physicians do have an area of expertise, even family practice physicians will typically have more experience on one area than another depending on the patients they see.

 

The bottom line here is if you have a positive antibody test for celiac antibodies it means you are producing antibodies that a normal person without celiac disease doesn't produce.  Simply detecting celiac antibodies is abnormal in of itself, regardless of how strong the positive is.

[powerofpositivethinking]

Hi Karen,

 

I also did not display the classic signs of celiac.  I am a little overweight, and although I had many symptoms, my main ones were constipation and bloating.  At first my GI was going to dismiss my positive DGP IGG score.  I had a 43 and anything over 30 was a strong positive.  All my IGA tests were negative, and I have a normal IGA level.  I had the biopsy done, which was negative, but I went gluten free regardless and started to improve greatly especially my mental health. 

 

Fast forward to earlier this year, my constipation had pretty much resolved, but I was still getting bloated rather frequently.  I was also deficient in Vitamins D and K, which are both fat soluble vitamins, despite massive supplementation.  The GI ran a few more tests and I found out I was malabsorbing both neutral and total fats, which signal problems with the pancreas and small bowel.  He diagnosed me with celiac and also severe pancreatic insufficiency, which means my pancreas doesn't release enzymes to properly digest fat. 

 

Everything I've read about fat malabsorption and pancreatic insufficiency says that a person is wasting away, and that is not my case.  I am thankful that I have a doctor that worked with me to figure things out, but at first he wanted to dismiss my positive DGP IGG score, and now he realizes the importance of that test related to celiac disease. 

 

Floating stool is a sign of fat malabsorption.  Now I realize my main signal for fat malabsorption was my stool sticking to the toilet bowel.  The GI prescribed me a pancreatic enzyme called Creon, so I'm taking that for the next few months.  The good news is since everything else was ruled out and the pancreatic insufficiency is related to celiac, the hope is that in a few months with help from Creon, my body will remember how to digest fat again, and I can stop taking the Creon. 

 

I started this thread and updated it along the way, so I hope you find it useful: https://www.celiac.com/forums/topic/100245-other-known-causes-of-high-dgp-igg-besides-celiac/

 

good luck!