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Endoscopy Looked Good

svroche

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svroche Rookie
svroche
Posted

My 4-yr-old son had an endoscopy this morning, and the doctor said that everything looks great. He took (I think) 8 biopsies, and now we are awaiting the results to discuss at our follow-up on October 21st. He also ordered a full IgA serum level because the only reason we had the procedure in the 1st place was due to a positive gliadin IgG test, with a negative on the TtG and gliadin IgA. The doctor does not really suspect Celiac at this point because the duodenum looked so good.

I am still very concerned about my son's drop on the growth charts, his belly pains, and his numerous trips to the bathroom with loose stool. If it's not Celiac, not sure what to do next.

I was wondering if any parents of children with Celiac have had similar test results?

Thanks,

Sarah

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

My 4-yr-old son had an endoscopy this morning, and the doctor said that everything looks great. He took (I think) 8 biopsies, and now we are awaiting the results to discuss at our follow-up on October 21st. He also ordered a full IgA serum level because the only reason we had the procedure in the 1st place was due to a positive gliadin IgG test, with a negative on the TtG and gliadin IgA. The doctor does not really suspect Celiac at this point because the duodenum looked so good.

I am still very concerned about my son's drop on the growth charts, his belly pains, and his numerous trips to the bathroom with loose stool. If it's not Celiac, not sure what to do next.

I was wondering if any parents of children with Celiac have had similar test results?

Thanks,

Sarah

I don't know why dr's like to say this when they haven't even gotten the results back yet but it seems to be a trend now for them to jump to conclusions before they get the report. Wait until you get he report before you draw any conclusions. Villi damage usually cannot be seen except under a microscope. That is why it can also be false negative in children or people without a lot of damage yet--the dr can't see damage with their eyes when biopying--they are only guessing about where to take samples. So if the the damage is patchy they can easily miss it. With the positive blood test you should put him on a gluten-free diet regardless of the results of the biopsies. You can start him on the gluten-free diet now since his tests are all done, you don't need to wait for the results to start the diet.

carecare Enthusiast
carecare
Posted

So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with gluten. Do dr's not believe that a positive blood test is at the very least gluten intolerant? If blood work is positive why is it positive?...I am going to ask the GI this on friday. My daughter had a positive gliadin IgA result back 7-8 yrs ago and I was never told about it...yet she is clearly reacting to gluten as are my two boys. Her recent blood test was negative yet I know she suffers when eating gluten. I'm just curious as to why a doctor wouldn't at least admit the body is reacting to gluten when a blood test shows it is...even if the biopsy or TTG isn't positive.

Sorry, I have questions too! :blink: Didn't mean to hijack your post...but it sort of goes along with what you are wondering too. I mean...if your son has positive results when a gluten free diet is implemented then you would know for yourself that he's at the very least gluten intolerant.

svroche Rookie
svroche
Posted
  • Author

So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with gluten. Do dr's not believe that a positive blood test is at the very least gluten intolerant? If blood work is positive why is it positive?...I am going to ask the GI this on friday. My daughter had a positive gliadin IgA result back 7-8 yrs ago and I was never told about it...yet she is clearly reacting to gluten as are my two boys. Her recent blood test was negative yet I know she suffers when eating gluten. I'm just curious as to why a doctor wouldn't at least admit the body is reacting to gluten when a blood test shows it is...even if the biopsy or TTG isn't positive.

Sorry, I have questions too! :blink: Didn't mean to hijack your post...but it sort of goes along with what you are wondering too. I mean...if your son has positive results when a gluten free diet is implemented then you would know for yourself that he's at the very least gluten intolerant.

You voiced the same question I have been wondering! Please let me know on this thread what your doctor says to that question on Friday. It stands to reason that a positive gliadin antibody test shows some sort of reaction to gluten, right? Needless to say, our doctor is not done with us yet; we meet with him to go over everything on the 21st, and he has also already referred us to a pediatric nutritionist. He also asked me to pay closer attention to my son's diarrhea/loose stool, as to exactly how many times a day it is happening. (His current theory after the endo is that my son is not completely eliminating each time he goes, causing him to go frequently.)

I look forward to hearing your doctor's answer about the positive test.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

So I wonder this...do dr's believe a patient to be gluten intolerant if their biopsies are negative yet have a positive IgG test? I'm curious. My son was positive on his deamidated IgG test...and his endoscopy is in December. However, no matter what the test reveals in december a gluten free diet will be resumed 100% because I know he has an issue with gluten. Do dr's not believe that a positive blood test is at the very least gluten intolerant? If blood work is positive why is it positive?...I am going to ask the GI this on friday. My daughter had a positive gliadin IgA result back 7-8 yrs ago and I was never told about it...yet she is clearly reacting to gluten as are my two boys. Her recent blood test was negative yet I know she suffers when eating gluten. I'm just curious as to why a doctor wouldn't at least admit the body is reacting to gluten when a blood test shows it is...even if the biopsy or TTG isn't positive.

Sorry, I have questions too! :blink: Didn't mean to hijack your post...but it sort of goes along with what you are wondering too. I mean...if your son has positive results when a gluten free diet is implemented then you would know for yourself that he's at the very least gluten intolerant.

IMO, many dr's (if they know anything about celaic testign to begin with) are following the old standard of a positive biopsy being the most important element for diagnosis. From what I understand, the blood tests have come a LONG way since then; when they are positive it's something like 95-99% accurate. There was a post on here recently about Dr Fasano (sp?) who had originally pioneered the idea that the biopsy is the gold standard for diagnosing-- he is now trying to get that practise changed so that if you meet other criteria (I think it was 4 out of 5) including positive bloodwork, positive for the most common genes and positve response to the diet you can be diagnosed celiac. Most drs are still of the former mindset however that celiac is rare and will only diagnose if you have positive biopsy.

Roda Rising Star
Roda
Posted

I would at the very least consider him gluten intolerent and put him gluten free since all his testing is completed. My oldest boy has been negative on everything for the past three years and even had a negative biopsy in Aug. I've finaly come to the realization that tests don't always answer everything for us. He has been gluten free since the end of August and I have seen small improvements in him. I will be doing a gluten challenge in mid Dec. to see what happens. I don't need to do a three month challenge since we are already done with biopsy. He has a follow up appt. with the GI in Jan. so I can discuss his progress and response to the gluten challenge. I suspect that we will be able to get a diagnosis of gluten intolerence so I can set up the necessary things for school. Currently since we are doing a trial on our own, we have not requested any special accomidations at school. He is going on 11 so, it hasn't been a problem yet. His teacher has been great when I explained everything.

divamomma Enthusiast
divamomma
Posted

My daughter's scope looked normal but the biopsy proved she had marsh classification 3D damage. Complete villous atrophy. How this was not seen on scope I don't know.

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svroche Rookie
svroche
Posted
  • Author

My daughter's scope looked normal but the biopsy proved she had marsh classification 3D damage. Complete villous atrophy. How this was not seen on scope I don't know.

divamomma-

I see that your daughter was diagnosed at age 4, the same age as my son. What were her symptoms that prompted the testing?

My son was classified "failure to thrive" at a well-child check up, so our pediatrician ordered basic bloodwork to rule out the most common causes. Only his gliadin IgG came back positive (level 43, with reference 17), but his IgA TTG and Gliadin IgA were both negative. I'm very curious to get the results and find out if the positive IgG means anything, even if it is not Celiac.

divamomma Enthusiast
divamomma
Posted

My daughter was moody, irritable, lethargic, dark under eye circles, waking up crying at night, constantly hungry, achy legs. We also did blood work to see what (if anything) was going on. Her IgA ttg was 42.

svroche Rookie
svroche
Posted
  • Author

My daughter was moody, irritable, lethargic, dark under eye circles, waking up crying at night, constantly hungry, achy legs. We also did blood work to see what (if anything) was going on. Her IgA ttg was 42.

Thanks for sharing. You did not mention diarrhea, so was that not a problem for her? Except for the always hungry part, my son has the same symptoms, but since there is no chronic diarrhea or visible damage in the small intestine he is not really suspecting Celiac. Two of my other children also exhibit the same symptoms, so now I am really starting to wonder if their smallness has a cause. I know I'll have at least a partial answer by next Friday, but I really find myself addicted to reading everything I can about Celiac!

divamomma Enthusiast
divamomma
Posted

Oops, sorry! She never had diarrhea but was chronically constipated; for as far back as I can remember.

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