Endoscopy Today

[Brit1612]

We finally had my son's endoscopy today. Of course we won't know much until the biopsy comes back. They did 8 this time, so hopefully it will be more reliable.

They did mention that there was a spot that appeared more smooth on the duodenum, which would be more consistent with celiac, but that could just be like "human error". She said if they weren't already focused in on celiac then they may have not even thought anything of it. Not sure if she is just trying to be nice and not make us worry, or if it really wasn't anything. I can't help but feel that she wouldn't have mentioned it if she thought it was nothing.

To be honest, I was expecting her to say everything "looked good" no matter what since you always hear celiac damage typically can't be seen.....

[Jays911]

My Gi doc initially told me he thought I was "clean", but two days later told me I definitely had celiac. I hope this is the final,resolution you and your son deserve. Even if it isn't celiac, think about going gluten free. I feel so much better since I did. Blessings.

[Brit1612]

My Gi doc initially told me he thought I was "clean", but two days later told me I definitely had celiac. I hope this is the final,resolution you and your son deserve. Even if it isn't celiac, think about going gluten free. I feel so much better since I did. Blessings.

Did he tell you that just from what he saw during the procedure, or after seeing the biopsy results? Thanks...

[cyclinglady]

My GI thought I looked good visually, but the biopsy proved otherwise.

[celiac sharon]

Mine looked clear visually as well but came back clearly celiac

[BlessedMommy]

I'm hoping for a clear answer for you. You've been through so much trying to figure things out! Keep us posted!

[nvsmom]

Most celiacs can't be diagnosed except from the biopsy.  Things usually look good, if sometimes a bit inflamed, while they are doing the endoscopy.

 

Good luck to your son.  

[Dancingfeet]

I was diagnosed from a blood test initially.

Had to have an endoscopy to 'prove' it.

On screen apparently there was only a small sign of inflammation, but two months later, the biopsy results came back showing very much coeliac.

[Brit1612]

Ok, the results are in.  We are just waiting for the "enzyme analysis" (not really even sure what exactly that is looking for), but the biopsies came back completely clean.  The doctor feels confident in saying that he does NOT have celiac disease.  To be honest, I am shocked.  I honestly thought she was going to find something, but at the same time, he has done perfectly fine during the gluten challenge. 

 

Since we know he has the genes I understand that he could potentially get celiac one day, but as of now, all of his bloodwork (complete panel) is coming back very negative, and the biopsy was negative.

 

I still can't help but wonder what caused his positive igg, and what (more importantly) made him not grow for a long stretch of time......

 

But the doctor says we can't just hang on that one test (that is now negative - ON gluten), that we have to focus on him, and that he seems to be doing fine and the test are not showing anything.  I would not have trusted my first GI but this one is great, she did extra biopsies....just to be sure we weren't missing anything.  She is very thorough.

 

Now we will be off to see an immunologist to see what they have to say about his low IGA numbers.  Could a low IGA in itself have been the cause of all the issues?  I know it can cause diarrhea.....

 

 

Thanks everyone!

[murphy203]

Congrats!! Here's hoping that a diagnosis never happens or happens far in the future when he is more capable of managing the diet. :-)

I went through this with my son when he was a tweenager. His blood tets were slightly elevated but his biopsies were clear. We let it go at that point. He is rerunning the celiac tests now based on my diagnosis as soon as he has a morning off and can get to a lab.

[BlessedMommy]

Yay! Congrats on the negative tests. It always feels good to get a definitive answer. I was very relieved when my daughter tested negative for celiac. 

[Brit1612]

Congrats!! Here's hoping that a diagnosis never happens or happens far in the future when he is more capable of managing the diet. :-)

I went through this with my son when he was a tweenager. His blood tets were slightly elevated but his biopsies were clear. We let it go at that point. He is rerunning the celiac tests now based on my diagnosis as soon as he has a morning off and can get to a lab.

What you are saying is what I am worried about with my son.  I want to feel confident that he really doesn't have it.... And I do trust the GI we have now, but I do worry that we are missing something.  But for now I just have to trust the results.  How did your son's recent labs turn out?

[Brit1612]

Thanks everyone!

[murphy203]

Hi Brit, my son finallly went to the lab this morning, so we should have results in a few days. Your son is adorbale, btw. Mine is 6'4" tall now!!

[nvsmom]

I hope he continues to be well if he will be eating a normal diet.    Best wishes.

[Brit1612]

I hope he continues to be well if he will be eating a normal diet.    Best wishes.

For now, we are continuing a normal diet.  It is just so hard to follow if it is not necessary.  But we will be watching him like a hawk for any reason to believe he should be back on the diet. Going to see an immunologist this month and hopefully they can give us some more answers.....  Thanks for everything.

[Brit1612]

Hi Brit, my son finallly went to the lab this morning, so we should have results in a few days. Your son is adorbale, btw. Mine is 6'4" tall now!!

Oh wow!  I don't think my little guy will ever be that tall!  Thanks, he is a handful .  Hope your sons results come back negative.  What symptoms lead to him being tested as a child, if you don't mind me asking?  

[murphy203]

Hi Brit, I don't mind at all!! My son had nausea, constipation, and headaches, primariy. He didnt eat meat from the time he was a little kid (his choice, texture thing, with the blessing of his pediatrician) until he went to college and started eating ground beef (again, his choice) -- which, as you can imagine, is a great relief to me. The reason I bring this up is that his diet was full of fruit and vegetables at the time he had so much constipation. And grain. And milk. Turns out lactose (and anxiety) were his problems.