Confusing lab results & endoscopy

[Jennifer Mashburn]

Hello everyone!

My son is 6 years old and he is very small. He is the lower 5% of his age group for height and weight. He will be 7 years old on November 2nd and he only weighs 41pounds. I don't think he has gained weight in 2-3 years. He is a picky eater...very picky! He does not even like ice cream. 

He was diagnosed with hypothyroidism, which explains his short stature. He has been on synthroid for 6 months and is doing great. I do not know if he has hashimotos as he has not been tested for that. His endocrinologist did a celiac blood panel despite no digivestive issues (only poor appetite) or family history of celiac. His labwork is the following...

DUAL AG SCREEN 31 (ABNORMAL normal is 0-19)

TISSUE TRANSGLUTAMINASE IGA 0

TISSUE TRANSGLUTAMINASE IGG 1

IGA IMMUNOGLOBULIN ASSAY   65

 

DEAMIDATED GLIADIN IGA   62 (ABNORMAL normal is 0-19)

 

DEAMIDATED GLIADIN IGG 3

 

ENDOMYSIAL ANTIBODY IGA <1:10

 

He only had two abnormal labs. Endocrinology told us to go to GI and GI did a scope on Monday. We are still waiting on biopsy results. The GI doctor said the scope looked great visually, but biopsy will be the final answer.

 

What do y'all think? Can someone have celiac with mostly negative blood work? How accurate is the blood Work? What are the chances of this biopsy being positive? I feel like I have been waiting a lifetime for these results. Doctor said if biopsy is negitive, we should repeat blood work in two years.

 

 

 

 

 

 

 

 

 

 

[TexasJen]

11 hours ago, Jennifer Mashburn said:

Hello everyone!

My son is 6 years old and he is very small. He is the lower 5% of his age group for height and weight. He will be 7 years old on November 2nd and he only weighs 41pounds. I don't think he has gained weight in 2-3 years. He is a picky eater...very picky! He does not even like ice cream. 

He was diagnosed with hypothyroidism, which explains his short stature. He has been on synthroid for 6 months and is doing great. I do not know if he has hashimotos as he has not been tested for that. His endocrinologist did a celiac blood panel despite no digivestive issues (only poor appetite) or family history of celiac. His labwork is the following...

DUAL AG SCREEN 31 (ABNORMAL normal is 0-19)

TISSUE TRANSGLUTAMINASE IGA 0

TISSUE TRANSGLUTAMINASE IGG 1

IGA IMMUNOGLOBULIN ASSAY   65

 

DEAMIDATED GLIADIN IGA   62 (ABNORMAL normal is 0-19)

 

DEAMIDATED GLIADIN IGG 3

 

ENDOMYSIAL ANTIBODY IGA <1:10

 

He only had two abnormal labs. Endocrinology told us to go to GI and GI did a scope on Monday. We are still waiting on biopsy results. The GI doctor said the scope looked great visually, but biopsy will be the final answer.

 

What do y'all think? Can someone have celiac with mostly negative blood work? How accurate is the blood Work? What are the chances of this biopsy being positive? I feel like I have been waiting a lifetime for these results. Doctor said if biopsy is negitive, we should repeat blood work in two years.

 

 

 

 

 

 

 

 

 

 

Hi-

The deaminated gliadin IgA is very high.  This test has a 97% specificity (that is my understanding at least). That means if it is positive, there is a 97% chance your son has celiac as well. And hypothyroidism and celiac very commonly are seen together.

Even with normal appearance on the biopsy, there is a pretty good chance your son has celiac. 

Waiting for the biopsy results is torture! But while you are waiting, you might try reading the newbie posts here and learning about how to get started with a gluten free life. 

Hopefully, it will come back negative, but even then I am sort of left wondering why the high positive lab result. Even one antibody positive can indicate celiac - they don't all have to be positive. Make sure to have a long conversation with the GI doc regardless of the results of the biopsy.

Good luck!  Let us know how the biopsy comes out.

[cyclinglady]

Yes!  You just need ONE positive on the celiac panel.  Intestinal damage is microscopic, so you need to wait for the pathologist's report.  Keep in mind that even if negative, he still might have celiac disease.  The small intestine, when spread out, is the siz of a tennis court.  Easy to miss patches of damage. Six or more biopies should have been taken.  Get and keep all medical tests results in case you want a second opinion or later for a school 504 plan.  Your son will thank you later.  Nothing like sticking to the diet when you see results in black and white.  

An elevated DGP IgA is common in small children and the very old.  That is me.  Old and I had an elevated DGP IgA.  All others tests on my celiac panel were negative.  Still negative in even follow-up testing, so it was not a fluke.  My biopsies revealed moderate to severe patches of damage.  My GI took plenty.  

I also have Hashimoto's thyroiditis.  Please ask your doctor to order a thyroid antibodies panel to confirm as Hashi's diagnosis.  Hashi's, celiac disease and Type 1 diabetes are commonly linked.  

Your doctor is right.  A celiac panel should be run every two years.  Consider one for yourself or siblings as celiac disease is genetic.  If he fails to grow, talk to your doctor about a gluten free diet especially before his teen years (I am the shrimp in my family).  Your GI may just give you the diagnosis without the biopsy confirmation.  Trailing the  diet and a reduced DGP IgA can help make a diagnosis.  That is what they do in Europe.  Google it.  

Take care!  

[Jennifer Mashburn]

Thank you to you both! I'll update this thread once I get the results in so it may help others searching.

Cycling lady - so when you said an elevated DPG IGA occurs often in the young and old, did you mean the young and old in the celiac population or non celiac population?...I am sure you meant celiac population but just checking...are those the only age groups that typically have this lab elevated? My doctor did not make it sound like he was leaning one way or the other for a diagnosis. He was completely unsure. 

Not that I wish anything bad on my child, but in a way I hope it is positive. I feel like if its negative, I'll want to go gluten free anyway because of that weird abnormal lab value and I will completely obsess over it if we eat gluten. I'll have anxiety about it. I just don't understand why he would have antibodies if the diagnosis is not made. 

I know the GI doctor took a total of 9 biopsies from the esophagus all the way down to the small intestines. I just don't know how many biopsies from each section.

My son won't have his thyroid levels drawn again until December. I am requesting labs to test for hashimotos at that time. I actually suspect hashis and celiac as they tend to accompany each other. Do thyroid problems tend to be diagnosed with celiac or is it specifically hashimotos that is diagnosed with celiac due to both being autoimmune?

 

 

[cyclinglady]

Hashi's and celiac disease are both autoimmune diseases like MS, R. Arthritis, lupus, Diabets Type 1, etc, but they are most commonly linked.  Researchers are not sure, but genes probably come into play.  

An elevated DGP IgA can occur at any age.  Usually the ages are under 2 and over 70.  It is not common to only have an elevated DGP IgA.  I have searched and searched,  my GIs do not have an answer either.  I am just glad my GI ordered the endoscopy or else my diagnosis might have been missed.