Confusing Test Results

[jlmarti]

My 9yo daughter has had worsening celiac symptoms over the past year or two and has just had blood work done.  Everything is very low except IgG which is over double the max range number. The pediatrician is a little unsure about interpreting them and we are waiting to speak to the pediatric GI doc. I'm having a hard time finding info about IgA deficiency and if that's what her numbers indicate, and if so, does she have celiac or is it another autoimmune disease? It's so hard waiting to talk to a specialist! If anyone has any insight it would help calm my very concerned mother-brain. I don't know how long we will have to wait for an endoscopy but I'm currently force feeding her bread once a day while she sobs about why doctors are trying to make her sick by making her eat something they know her body is fighting against. So hard. Anyway, thanks in advance for any insight.    

 

 

Tissue Transglutaminase IgA Ab   <0.5 U/mL   0 - 14.9 U/mL

Tissue Transglutaminase IgG Ab   <0.8 U/mL   0 - 14.9 U/mL

Deamidated Gliadin Peptide IgA   <0.2 U/mL   0 - 14.9 U/mL

Deamidated Gliadin Peptide IgG   31.9 U/mL   0 - 14.9 U/mLH

IgA Quant    84 mg/dL   33 - 233 mg/dL

[trents]

Welcome to the forum, jlmarti!

The IGA Quant is also known as total IGA. When total IGA is low it can skew other IGA parameters downward so as to produce false negatives. Your daughter's total IGA is within normal range. The elevated IgG can indicate celiac disease.

The GI doc may wish to do an endoscopy with biopsy to check for damage to the villi lining the small bowel. If so, hopefully they will take a number of samples from both the duodenum and the duodenum bulb since damage can be patchy. If things move in this direction, ask those kind of questions. Too many times, celiac disease is missed by those who do less than thorough biopsying. 

What symptoms of a gluten-related disorder does your daughter exhibit? You do not mention that.

Also realize that children often do not produce typical immune system antibody responses to celiac disease since their immune systems are not mature. Here is a primer explaining the antibody tests that can be run for diagnosing celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[jlmarti]

Thank you knitty kitty! My daughter has regular (daily) diarrhea and stomach pain, and occasional vomiting. I know an endoscopy is in our future, I just don't know how long we'll have to wait. I know she has to be on gluten for it, but I don't know how much longer she'll be willing to eat gluten--she's so strong-willed, and force feeding or tricking a sick child into eating gluten to make her sicker feels like child abuse. I'm praying for someone to take pity on her and push her to the front of the line. She's had anger and emotional control behavior issues for years which I'm now wondering are untreated-celiac related.  Anyway, the combination of needing her cooperation and the gluten making her volatility worse is...impossible. Thanks again for the info.

[trents]

32 minutes ago, jlmarti said:

Thank you knitty kitty! My daughter has regular (daily) diarrhea and stomach pain, and occasional vomiting. I know an endoscopy is in our future, I just don't know how long we'll have to wait. I know she has to be on gluten for it, but I don't know how much longer she'll be willing to eat gluten--she's so strong-willed, and force feeding or tricking a sick child into eating gluten to make her sicker feels like child abuse. I'm praying for someone to take pity on her and push her to the front of the line. She's had anger and emotional control behavior issues for years which I'm now wondering are untreated-celiac related.  Anyway, the combination of needing her cooperation and the gluten making her volatility worse is...impossible. Thanks again for the info.

jlmarti, sorry I'm not yet seeing a post in this thread by knitty kitty. Do you see one? Your response would indicate that you do. I'm asking because this might indicate some problem with our forum software.

[Russ H]

33 minutes ago, jlmarti said:

Thank you knitty kitty! My daughter has regular (daily) diarrhea and stomach pain, and occasional vomiting. I know an endoscopy is in our future, I just don't know how long we'll have to wait. I know she has to be on gluten for it, but I don't know how much longer she'll be willing to eat gluten--she's so strong-willed, and force feeding or tricking a sick child into eating gluten to make her sicker feels like child abuse. I'm praying for someone to take pity on her and push her to the front of the line. She's had anger and emotional control behavior issues for years which I'm now wondering are untreated-celiac related.  Anyway, the combination of needing her cooperation and the gluten making her volatility worse is...impossible. Thanks again for the info.

According to this study, IgG anti-DGP antibodies can show up before tTG antibodies in children with coeliac disease, which is basically what the results you posted show.

https://www.naspghan.org/files/documents/pdfs/cme/jpgn/Antibodies_to_Deamidated_Gliadin_Peptide_in.13.pdf

IgG anti-DGP are highly specific for coeliac and unlikely to be a false positive.

[trents]

You also have the option, jlmarti, of assuming she does have celiac disease and putting your daughter on a trial gluten free diet. If her symptoms improve you likely have confirmation.

[jlmarti]

1 hour ago, trents said:

jlmarti, sorry I'm not yet seeing a post in this thread by knitty kitty. Do you see one? Your response would indicate that you do. I'm asking because this might indicate some problem with our forum software.

I'm confused. Now when I see the response I was referring to, it's you who is the author, not knitty kitty. Not sure if I imagined it or if I it was a computer glitch? 

 

 

1 hour ago, Russ314 said:

According to this study, IgG anti-DGP antibodies can show up before tTG antibodies in children with coeliac disease, which is basically what the results you posted show.

https://www.naspghan.org/files/documents/pdfs/cme/jpgn/Antibodies_to_Deamidated_Gliadin_Peptide_in.13.pdf

IgG anti-DGP are highly specific for coeliac and unlikely to be a false positive.

So helpful! thank you!

[jlmarti]

1 hour ago, trents said:

You also have the option, jlmarti, of assuming she does have celiac disease and putting your daughter on a trial gluten free diet. If her symptoms improve you likely have confirmation.

She does better immediately when we remove gluten but I was under the impression that we needed an endoscopy to assess damage and have as a baseline and... I don't even know. I would love to skip the endoscopy if it isn't necessary. Is it more "necessary" in pediatric cases?

[trents]

2 hours ago, jlmarti said:

She does better immediately when we remove gluten but I was under the impression that we needed an endoscopy to assess damage and have as a baseline and... I don't even know. I would love to skip the endoscopy if it isn't necessary. Is it more "necessary" in pediatric cases?

For follow up and to assess healing and compliance with gluten-free diet you can also have her tested for antibodies in six months or a year. If her IGG is lower or within normal range then you are accomplishing what you need to. The inflammation of the small bowel lining when gluten is ingested is what damages the villi. The inflammation produces antibodies which is what the serum tests are measuring. If there are no antibodies being produced then that indicates there is no inflammation happening and healing/rebuilding of the SB lining is presumed to be occurring. While this is a less direct way of assessing healing progress than is the endoscopy/biopsy, the principle is valid and it is certainly less intrusive, less traumatic method of healing assessment, especially when we are talking about children. Sometimes circumstances dictate settling for a course of action that is less than ideal. And never forget, your doctors are not kings. You have final decision making power. It is your daughter, not the doc's. 

Concerning your mistake in referring to knitty kitty when responding to my post, I suspect you may have been reading another thread where kk gave input that you resonated with as being applicable to your own concerns with your daughter and then forgot you were back in your own thread.

Edited June 12, 2022 by trents

[Wheatwacked]

If you and the rest of the family are also going to be gluten free, you could safely assume Celiac because of the improvement in her. 1% of the population has Celiac dianosis, 10% have Non-Celiac Gluten Sensitivity. The problem is that kids forget how bad it was and peer pressure kicks in. An official medical diagnosis might help (or later cause a rebellion)  Whichever way you go, when you get to the gluten free diet stage start with a hypo allergenic diet to speed healing. Get her vitamin D plasma checked, most autoimmune patients have low D and at the right level it can control the autoimmune response. Vitamin D and the Immune System

[knitty kitty]

@jlmarti,

Thanks for reading my posts somewhere on the forum!  

You would do well to ask your doctor about making a Celiac Disease diagnosis based on her high DPG results alone or with a genetic test which looks for the most common Celiac genes.  

I'm in agreement with your daughter about doctors ignoring the "first do no harm" when it comes to Celiac and being forced to eat harmful gluten for a diagnosis.  They don't realize how badly gluten can make some of us feel.  Having a baseline endoscopy is beneficial, but not necessary.  Keeping track of lower antibodies in the blood over a period of time is much less invasive than endoscopy.

If your daughter's doctor insists on endoscopy, ask to be put on the Cancellation list so your daughter will be called if someone cancels an appointment.  Pester the doctor's office daily for an earlier appointment.  

If continuing on the gluten challenge is required, try feeding gluten before bedtime.  Some people find this easier to tolerate during the gluten challenge.  Reduce dairy.  Dairy can exacerbate symptoms, so cutting back on dairy might help.  

Discuss with your daughter's doctor possible nutritional deficiencies.  Checking for vitamin and mineral deficiencies are part of proper follow up care for Celiac patients. 

Do not start supplementing vitamins and minerals before testing for deficiencies because the tests will reflect the supplements taken and not the actual results.  

You said "She's had anger and emotional control behavior issues for years which I'm now wondering are untreated-celiac related."

My opinion is yes.  Gluten, antibodies and vitamin deficiencies can affect the brain causing emotional lability, mood swings, and emotional control issues.  This can be very scary and disconcerting to a young child.  Patience and understanding from her mom will help your daughter through this tough time.  

The brain uses as much Thiamine Vitamin B1 as muscles running a marathon.  Thiamine is deficiency has been linked to emotional changes like those mentioned earlier.  Allithiamine will easily cross the blood brain barrier and help alleviate the brain health issues.  Discuss with your doctor before supplementing.  

{{{{Big hugs}}}}  Stay strong. 

 

[jlmarti]

54 minutes ago, knitty kitty said:

@jlmarti,

Thanks for reading my posts somewhere on the forum!  

You would do well to ask your doctor about making a Celiac Disease diagnosis based on her high DPG results alone or with a genetic test which looks for the most common Celiac genes.  

I'm in agreement with your daughter about doctors ignoring the "first do no harm" when it comes to Celiac and being forced to eat harmful gluten for a diagnosis.  They don't realize how badly gluten can make some of us feel.  Having a baseline endoscopy is beneficial, but not necessary.  Keeping track of lower antibodies in the blood over a period of time is much less invasive than endoscopy.

If your daughter's doctor insists on endoscopy, ask to be put on the Cancellation list so your daughter will be called if someone cancels an appointment.  Pester the doctor's office daily for an earlier appointment.  

If continuing on the gluten challenge is required, try feeding gluten before bedtime.  Some people find this easier to tolerate during the gluten challenge.  Reduce dairy.  Dairy can exacerbate symptoms, so cutting back on dairy might help.  

Discuss with your daughter's doctor possible nutritional deficiencies.  Checking for vitamin and mineral deficiencies are part of proper follow up care for Celiac patients. 

Do not start supplementing vitamins and minerals before testing for deficiencies because the tests will reflect the supplements taken and not the actual results.  

You said "She's had anger and emotional control behavior issues for years which I'm now wondering are untreated-celiac related."

My opinion is yes.  Gluten, antibodies and vitamin deficiencies can affect the brain causing emotional lability, mood swings, and emotional control issues.  This can be very scary and disconcerting to a young child.  Patience and understanding from her mom will help your daughter through this tough time.  

The brain uses as much Thiamine Vitamin B1 as muscles running a marathon.  Thiamine is deficiency has been linked to emotional changes like those mentioned earlier.  Allithiamine will easily cross the blood brain barrier and help alleviate the brain health issues.  Discuss with your doctor before supplementing.  

{{{{Big hugs}}}}  Stay strong. 

Thank you so much! The info and support is invaluable to me right now.