Mom Instinct For The Win: Deamidated Gliadin Igg

[Orinda]

My 5-year-old has been exhibiting similar symptoms as my older daughter did before her celiac disease diagnosis five years ago. I had her initially screened a year ago. Her total IgA is low, which means the ttg test against the IgA was pointless. Her ttg IgG was also negative.

 

Fast forward to a few months ago. Still exhibiting symptoms, so I got her a referral to a pediatric GI doc. They redid the tests, which again had similar results — low total IgA, negative to both ttg tests (IgA and IgG). The doc said, nope, no celiac disease.

 

I've been talking to this doc via patient portal for a bit, saying that I would like some further testing because of her IgA deficiency, so she ordered the deamidated gliadin igg test. Got the blood drawn a few days ago. Got the results today.

 

It was positive. (her level was 22, and the high point of the negative range was 17)

 

She did say it was a pretty low positive which might make getting a positive biopsy result difficult, so we're going to retest in six months. If it's the same or higher, I'm probably going to go ahead and do the biopsy.

 

While I am bummed we might have another kiddo with celiac disease, I feel really vindicated that I pushed for further testing.

[ravenwoodglass]

So the doctor wants to have her stay on gluten for another six months to see if your child will then be damaged enough that the results are higher so then the doc can do a scope. 

Has the doc suggested getting her gluten free and then retesting in six months to see if the results go down? Since you have one child diagnosed the chances of others in the family being celiac are fairly high. IMHO it makes more sense to go with gluten free then retesting to see if results have gone down since she is having symptoms. 

[cyclinglady]

What? I tested barely positive on just my DGP IGA and the rest of the full panel was negative. I was not IGA deficient. My biopsy revealed a Marsh Stage IIIB (moderate to severe damage).

Her older sister has celiac disease, she is IGA deficient, and yet your doctor wants to wait for more damage to occur? I would get a second opinion.

[nvsmom]

I think your doctor was pretty clueless to rely on only the tTG IgG test to detect cs in a child!  To begin with, the tTG IgG is not very sensitive and can miss as many celiacs as it catches.  It is the type of test that can NOT rule out celiac disease because of its high level of false positives.  Also, the DGP tests are the best tests for detecting celiac disease in young children - far superior to the tTG even when not IgA deficient.  The doctor should know this! 

 

I would strongly suggest you think twice about subjecting your child to another 6 months on gluten. She is so young... 6 months is a sixth of her life and there is absolutely zero guarantee that her tTG IgG will become positive OR that she will show villi damage in an endoscopic biopsy, which can miss up to 20% of celiacs anyways.

 

I would scope her now, if you want the scope, and then have her go gluten-free.  She has symptoms, a positive celiac disease test (which is about 98% specific to celiac disease),   an IgA deficiency (much more common in celiacs than the regular population), and a family history of celiac disease.... She has celiac disease!  I would get her eating gluten-free as soon as possible - don't wait 6 months.  Who knows what kind of health problems she could develop during that time.  

[Orinda]

Oh my gosh. I was feeling so happy that we finally might have an answer and now I'm conflicted again. I took her to a good children's hospital in Kansas City for the testing, I admit that I am really unhappy that she wasn't looked into more carefully — if I hadn't insisted on further testing, we'd think she was fine, but she's probably not. 

 

I definitely am conflicted on the timetable. On one hand, what if I put her through the biopsy and it's negative because she isn't damaged enough? But if I wait 6 months, what will she be going through during that time?  

 

I feel pretty strongly that we need the diagnosis as she moves through life. I feel that it helps with compliance as well as having that in our pocket as we head into school (I think people take a medical diagnosis more seriously than a self-diagnosis). 

 

Her symptoms are not yet severe, but I do feel they are intensifying. She has been suffering from generalized abdominal pain for months, but it's not severe. However, it appears on a regular basis, which is what sent me to get her tested (this is how her sister started out as well). She's been more prone to constipation and a sluggish bowel, but again, it's not severe. She has enamel discoloration on some of her teeth. And for the past month or so, she's been complaining about hand, finger, foot and toe pain (which caused me to worry she's headed towards a juvenile arthritis diagnosis, which her sister also has — fortunately no swelling at this time though).

 

So I don't know what to do. The doctor said that she may be at the beginning of celiac disease and it might not show in a biopsy. She does eat gluten-free more than most children just because we eat a lot of gluten-free meals as a family. But in no way do I restrict her. 

 

This sucks. Her sister had very traditional serological evidence — a normal total IgA and a tTG IgA over 100. Is my little one experiencing something rare?

 

Thanks for listening and responding. I really appreciate it.

[Orinda]

I emailed the doctor explaining that we don't feel comfortable waiting six months because I feel it's cruel to make her suffer. I'll update here with what's next.

[nvsmom]

I didn't get these links on here in my last post because I was on another computer.

 

This journal article shows that the sensitivity of the tTG IgG can be as low as 40%, which means it misses up to 60% of celiacs: Open Original Shared Link

 

This paper shows the DGP tests are very reliable (pages 11-12):Open Original Shared Link

And says on page 12:

Studies have shown that detection of the IgG class (of DGP) is highly sensitive and specific for a suspicion of celiac disease in general, and also for detection of the disorder in tTG-seronegative cases and in patients with selective IgA deficiency.

 

This article discusses how hard it is to diagnose celiac disease in children based on symptoms: Open Original Shared Link

 

Don't judge her disease based on the severity of her symptoms.  I too had stomach aches and C during my childhood.  On my worst days, I would maybe lay on the couch for 30 minutes after eating to wait for the pain to go.  As for the C, I was able to go most days, but I had no idea I had bad C since it was all I had ever known.  (here is a poop scale to check out: Open Original Shared Link I had knee pain by age 10 but I was told my pains were just "growing pains".  I still have the same pains 30 years later only worse.

 

I would call her a celiac and have her eat gluten-free.  If you want to biopsy her, do it sooner so she doesn't get sicker... Waiting 6 months so she is sick enough to diagnose just seems wrong to me.  If the biopsy is negative, remember that it does not discount her previous positive test. A negative biopsy does not mean that she does not have celiac disease, it only means that the biopsy does not support the diagnosis of celiac disease... And it is not unusual for a celiac to have a negative test result.

 

Dr Fasano, a leading celiac disease researcher suggests that a celiac should have 4 out of the 5 diagnostic criteria to be diagnosed as a celiac:

1. celiac symptoms
2. positive serologic tests
3. positive biopsy
4. positive genetic tests (DQ2 or DQ8)
5. positive response to the gluten-free diet

Open Original Shared Link

I was positive in 1,2, and 5.  I skipped the biopsy and genetic tests were unavailable to me. I have 3/5 but I am a celiac.  Your daughter is positive in 1 and 2, and most likely 4 since her sister has it.  

 

BTW, I tested my three boys since two were showing symptoms.  The doctor would only do the tTG IgA test. That was it.  All three were negative.  I went with my gut and made them gluten-free and they are much better.  I assume that they had early celiac disease but it could be non-celiac gluten sensitivity (NCGS) but I doubt it; it could also be a coincidence, but I doubt that too.  They feel better and that is the main theing.  

 

(hugs) to you mom.

[Orinda]

We're about halfway through the month of waiting for her scope/biopsy (she said that going for the scope "now" instead of waiting 6 months was totally fine, but still wanted to wait a month). It's really become apparent that she eats little to no gluten on a regular basis, which may be why her DGP test came up as a low positive. We just don't eat a lot of gluten-filled meals since her sister has celiac disease, and she doesn't like pizza or stuff like that. So I'm making sure she eats a couple pieces of bread daily, or something like that. 

 

She seems to be doing okay, but I can tell she doesn't feel all that great. I also feel like it's important to get the actual diagnosis instead of making her change her diet permanently. I also think it helps for compliance reasons when she gets older. 

 

Is it pretty unlikely that she would have had a false positive to the DGP IGG? 

[nvsmom]

Is it pretty unlikely that she would have had a false positive to the DGP IGG? 

 

Very unlikely.  The DGP IgG is 99-100% specific to celiac disease.  It is the MOST specific of all the tests.  Look at Table 3 on page 12 of the Open Original Shared Link.  A positive DGP IgG is as close to a sure thing as you can get.  

 

I'm glad that she isn't doing too badly.  Good luck with it.

[Orinda]

Her scope/biopsy was today. Everything went well. Visually she was normal, but so was her sister. Who is of course celiac (biopsy revealed villi damage for her). Results should be back in a week to ten days.

[cyclinglady]

Continue to keep us posted, please!

My visual was normal too. Still biopsies revealed a Marsh Stage IIIB!

[Orinda]

I admit I'm a little worried I put her through this for nothing. But there was no way I wanted to wait six months.

[Orinda]

Well I posted a question in a Facebook group, hoping to find someone who had been through something similar (low total IgA, normal tTG tests (both) but positive DGP IgG). A doctor answered (his name is Rodney Ford and I've read some stuff he's written), and he said,

 

"The DGP-IgG (Deaminated Gliadin Peptide) test is very sensitive in picking up early celiac disease. With the tTG negative, it is likely the an endoscopy would be negative at this stage of the disease."

 

Arghhh.... so did we go through all that for no reason? Maybe I should have waited after all.

[nvsmom]

You never know.  The only thing waiting would do is make her sicker so doctors could agree she was sick. 

[Orinda]

Her biopsies were normal

[cyclinglady]

I think you need to discuss this with your GI. The biopsy results do not rule out celiac disease, not with her blood test results. It just maybe too early yet for intestinal damage or he missed the damaged areas as they can be patchy. Your GI may give you a diagnosis based on a gluten-free diet and symptom resolution. You can continue on and re-test her later. The possibilities are endless without that discussion with your GI and a second opinion from another GI who may be more celiac disease savvy.

It is great that you are such an advocate for your children's health! Good job, Mom!

[Orinda]

Thank you! She has an appointment in December, they will retest her then to see if there are any changes. I assume if the numbers go up they'll eventually want to scope her again. She's a trooper though, said she wanted to go back because the bed was really comfy