Daughter biopsy today!

[Jules22]

So my type 1 daughter had her biopsy today and the gi afterwards noticed some redness/inflammation (gastritis?) but also saw the villi.  I guess I was expecting that with her blood test result of her transglutinminase ttg iga of over 100 that she would definitely see some damage.  Her symptoms seem to be ramping up as well.  She took multiple biopsies in several locations and now we wait.  Do you think that there is a chance that with a very positive blood test result she could have a negative biopsy?  My daughter was saying that she would like the positive biopsy to know for sure and to make it easier to stick to being gluten free forever. 

 

This is really hard waiting

[ravenwoodglass]

I hope you don't have to wait too long for the results. A false negative is always possible since we have a lot of intestine but it sounds like you have a good doctor who took lots of biopsies.  Since she had a high positive it would be a good idea for her to do the diet strictly for a few months no matter the results. I hope you get some clear answers and that she is feeling better soon.

[cyclinglady]

My GI told me that everything looked great visually (endoscopy), but my biopsies revealed moderate to severe intestinal damage.  ☹️  You just have to wait for the pathologist's report.  

[Jules22]

Thanks for the responses raven and cyclinglady!  I guess we just have to wait.  Is it wrong that I want there to be no question that its celiac?  She has had so many symptoms for awhile now--seemingly increasing--but I want there to be no question in her mind that she needs to be gluten-free--you know?

For now we are working on eating gluten-free but I haven't really tackled the whole cross-contamination thing yet and looking into my freezer, fridge and pantry I have a decent amount of gluten that the rest of us will eat.  Then I guess I'll decide how gluten-free the rest of us should be.

On a side note--the gi ran a bunch of tests prior to the biopsy--I haven't seen the results--but they mentioned over the phone that her white blood cells were high--maybe due to celiac?

 

 

[cyclinglady]

I know I needed the confirmation.  My hubby went gluten free per the very poor advice from my allergist and his GP.   It worked, but we really do not know if he has celiac disease.  He refuses to do a gluten challenge and I do not blame him.  We do know that gluten makes him sick.  He has been gluten free for 16 years.  

So, when my GI suspected celiac disease, I could not believe it.  I had no tummy issues at the time, but was anemic.  Had been my whole life and it was blamed on a genetic anemia and menstruation.  I knew what being gluten free meant and I did not want to have celiac disease.  But,   I got positives  on the DGP and my biopsy.    Nothing like seeing something in writing.  I showed that to my extended family who was in denial as well.  

I had a shared household with hubby all those years.  But after my diagnosis and the fact my kid started making things in the kitchen, we all went Gluten Free.  Great kid, but I could not trust her with my health!  If you DD has small siblings, consider all going gluten free.  They can eat gluten outside of the house.  That is what my kid does.  

[Jules22]

Does a biopsy coming in quick mean anything?  My daughter's GI called today to say that the results are in and asked if she could come in tomorrow---sadly she is working right now and scheduled to work tomorrow and I didn't think I could make that decision for her!  But of course I'm anxious to find out the results--and we weren't scheduled with the GI until next Friday!

 

Also, I came across a video online by a Dr. David Johnson who was talking about celiac biopsy protocols and he said that in a group of people the only atrophy that is found is at the duodenal bulb.  And that should always be a place to be biopsied--along with others.  Looking at the sheet I was given after her procedure--it was noted that she had possible erythematous mucosa at the duodenal bulb but no biopsies were listed as taken.  Other areas had the mucosa found and biopsies there were done.  Several in other areas.  Does this mean that her biopsy might not have been done correctly?

This is such a frustrating diagnosis--and I just need to find out to move forward.

[cyclinglady]

This is beyond my capabilities as I do not wear a white coat.  Best to talk to the GI.  

[Jules22]

Thanks--I understand.  I guess I have never been a very patient person--Lol!

[kareng]

29 minutes ago, Jules22 said:

Does a biopsy coming in quick mean anything?  My daughter's GI called today to say that the results are in and asked if she could come in tomorrow---sadly she is working right now and scheduled to work tomorrow and I didn't think I could make that decision for her!  But of course I'm anxious to find out the results--and we weren't scheduled with the GI until next Friday!

 

Also, I came across a video online by a Dr. David Johnson who was talking about celiac biopsy protocols and he said that in a group of people the only atrophy that is found is at the duodenal bulb.  And that should always be a place to be biopsied--along with others.  Looking at the sheet I was given after her procedure--it was noted that she had possible erythematous mucosa at the duodenal bulb but no biopsies were listed as taken.  Other areas had the mucosa found and biopsies there were done.  Several in other areas.  Does this mean that her biopsy might not have been done correctly?

This is such a frustrating diagnosis--and I just need to find out to move forward.

Probably just means that the lab isn't busy.  Not many people scheduling elective procedures at the end of July.

[Jules22]

That makes sense--got to stop worrying and thinking about this.  It will be what it will be.