High ttg iga negative biopsy??

[AS2914]

I’m at kind of a loss here. My 6 year olds tTg IgA was >250 but his GI says his biopsy was negative. Has any had this happen? We made sure he was eating gluten up until the procedure. The Doctor says a gluten free diet may still be beneficial. Now what? Do we seek a second opinion? 

[Fenrir]

Do you know how many biopsies they did? They should be doing 4-8 to be accurate. 

[cyclinglady]

I am sorry that you are struggling to get a diagnosis.  

With his TTG well over 200, you would think he would have intestinal damage.  So, I would be a copy of the GI’s report, along with the pathologist’s report and find out exactly where and how many biopsies were taken.  Damage can be spotty and easily missed as the surface area of the small intestine when stretched out flat is larger than a tennis court.  Read this about biopsy location in children:

https://www.giejournal.org/article/S0016-5107(10)00242-7/fulltext

It would not be the first time that reports were lost or mis-read.  

Repeat the complete celiac panel.  

What about other labs?  Is he deficient in anything like iron or vitamins?  Any anemia?  Those will improve or normalized on a gluten-free diet if he has celiac disease and will help to solidify a diagnosis.  

I could have sworn my teen niece had celiac disease.  A pill camera revealed damaged way beyond the reach of the scopes.  She has Crohn’s (but could still develop celiac disease).  I am sharing this because she went through 4 Pediatric GIs, before her diagnosis was caught.  Her mom persisted.  

You can get another opinion and take all the medical records with you or  you can trial the diet.  If he improves, then get a written diagnosis from the GI.  You will need that for schools in order to keep him safe (504 plan).  

He is lucky to have you as a mom.  ?

Edited January 22, 2020 by cyclinglady

[AS2914]

On 1/22/2020 at 6:22 AM, Fenrir said:

Do you know how many biopsies they did? They should be doing 4-8 to be accurate. 

I don’t. His GI and I have been playing phone tag and now he is out for two weeks. 

[AS2914]

On 1/22/2020 at 8:17 AM, cyclinglady said:

I am sorry that you are struggling to get a diagnosis.  

With his TTG well over 200, you would think he would have intestinal damage.  So, I would be a copy of the GI’s report, along with the pathologist’s report and find out exactly where and how many biopsies were taken.  Damage can be spotty and easily missed as the surface area of the small intestine when stretched out flat is larger than a tennis court.  Read this about biopsy location in children:

https://www.giejournal.org/article/S0016-5107(10)00242-7/fulltext

It would not be the first time that reports were lost or mis-read.  

Repeat the complete celiac panel.  

What about other labs?  Is he deficient in anything like iron or vitamins?  Any anemia?  Those will improve or normalized on a gluten-free diet if he has celiac disease and will help to solidify a diagnosis.  

I could have sworn my teen niece had celiac disease.  A pill camera revealed damaged way beyond the reach of the scopes.  She has Crohn’s (but could still develop celiac disease).  I am sharing this because she went through 4 Pediatric GIs, before her diagnosis was caught.  Her mom persisted.  

You can get another opinion and take all the medical records with you or  you can trial the diet.  If he improves, then get a written diagnosis from the GI.  You will need that for schools in order to keep him safe (504 plan).  

He is lucky to have you as a mom.  ?

Thank you. We decided to keep him on gluten for now until we can have more testing done. His results are so contradictory it’s clear either the blood work or biopsy is wrong and we need to find out which. Regardless I will be seeking a second and maybe third opinion. It’s just so frustrating. With numbers that high we were  expecting clear answers and we didn’t get them. 

Also all his other labs were normal

[Palvyre]

I had a high positive Ttg-IgA and a negative biopsy as well. My doctor gave me a genetic test which came back positive with a High Risk category. He then put me on a 4 month trial gluten-free diet and then reran blood work after that. My symptoms improved and my blood work went to normal. Based on that I was diagnosed with Celiac disease. A year later I had a bone density scan and I was found to have osteoporosis as well. I had a ton of symptoms at diagnosis, now 5 years later strictly gluten free, they are all gone. I still have osteoporosis, but it has improved some and I haven't gotten any worse.

[cyclinglady]

2 hours ago, Palvyre said:

I had a high positive Ttg-IgA and a negative biopsy as well. My doctor gave me a genetic test which came back positive with a High Risk category. He then put me on a 4 month trial gluten-free diet and then reran blood work after that. My symptoms improved and my blood work went to normal. Based on that I was diagnosed with Celiac disease. A year later I had a bone density scan and I was found to have osteoporosis as well. I had a ton of symptoms at diagnosis, now 5 years later strictly gluten free, they are all gone. I still have osteoporosis, but it has improved some and I haven't gotten any worse.

Wow!  Thank you for sharing!  

Celiac disease intestinal damage can be missed during an endoscopy.   I also have osteoporosis (fractures about three months after my celiac disease diagnosis).  No improvements, but I am not worse and better yet — no more fractures.  

[BrettPena]

On 1/21/2020 at 8:40 PM, AS2914 said:

I’m at kind of a loss here. My 6 year olds tTg IgA was >250 but his GI says his biopsy was negative. Has any had this happen? We made sure he was eating gluten up until the procedure. The Doctor says a gluten free diet may still be beneficial. Now what? Do we seek a second opinion? 

I know this is 2 years after you posted this, but did you ever figure anything else out? My 3 year old is in the same boat & I don’t know what to do. 

[trents]

1 hour ago, BrettPena said:

I know this is 2 years after you posted this, but did you ever figure anything else out? My 3 year old is in the same boat & I don’t know what to do. 

Brett, this is not uncommon with young children. Their body systems are much more resilient in some ways than those of adults and it is possible that if your child has celiac disease there just hasn't been enough time for the small bowel villi to show damage. The serum antibody tests can still detect the inflammation, however. It is also possible that the damage was very patchy and the biopsy missed the damaged areas. We see this sometimes, especially when the one doing the scoping doesn't have much experience with celiac disease. Can you share with us what the actual antibody test numbers were along with laboratory reference ranges?

I think the appropriate course of action, now that both kinds of tests are complete, to put your child on a strict gluten free diet and then have the antibody test done again in about six months.

Young children with celiac disease sometimes give atypical test results and extra tests need to be run.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Also, this might help you get started on learning to eliminate gluten from your child's diet:

 

[Michael Sanchez]

I am new to all this,  I am 57 and had a physical. My primary physician ordered typical labs.  I was found to have Iron deficiency anemia, low ferritin, Low Iron, Vit D deficiency.   She ordered Celiac panel.   My tTg Iga and DgM iga were all over 250.  She ordered EGD which I am having in 2 weeks to confirm Celiac.  I have NO physical symptoms.  I feel great.  Question is.  I followed my primary advice to go gluten free since anti body test is indicative of Celiac.  Do I need to continue to eat gluten till EGD?  IF MY levels were over 250, shouldn't  my gut be damaged enough to confirm diagnoses in 2 weeks.  It should heal in 2 weeks?

[plumbago]

58 minutes ago, Michael Sanchez said:

I followed my primary advice to go gluten free since anti body test is indicative of Celiac.  Do I need to continue to eat gluten till EGD? 

Most on here will say yes, to continue eating gluten containing foods. I would also advise that.

There are links on this site advising you on pre-EGD prep, but there's also this.

https://nationalceliac.org/celiac-disease-questions/diagnosing-celiac-disease-after-going-on-a-gluten-free-diet/

Good luck.

[trents]

Yes you do. If you stop gluten now, the damaged small bowel villi will begin to heal and the biopsy restults will be compromised.

[Michael Sanchez]

ok..  2 more weeks of beer.  lol. then I will change my diet 

thanks 

[trents]

I don't know how much gluten is in beer but the Mayo Clinic guidelines for a pretest gluten challenge is two slices of wheat bread (or  the gluten equivalent) daily for two weeks leading up to the endsocopy/biopsy.