Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Endoscopy Today

Brit1612

Recommended Posts

Brit1612 Apprentice
Brit1612
Posted

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.....

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Jays911 Contributor
Jays911
Posted

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 Apprentice
Brit1612
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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

celiac sharon Apprentice
celiac sharon
Posted

Mine looked clear visually as well but came back clearly celiac

BlessedMommy Rising Star
BlessedMommy
Posted

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

nvsmom Community Regular
nvsmom
Posted

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.  :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Dancingfeet Newbie
Dancingfeet
Posted

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 Apprentice
Brit1612
Posted
  • Author

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 Rookie
murphy203
Posted

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 Rising Star
BlessedMommy
Posted

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 Apprentice
Brit1612
Posted
  • Author

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 Apprentice
Brit1612
Posted
  • Author

Thanks everyone!

murphy203 Rookie
murphy203
Posted

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 Community Regular
nvsmom
Posted

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

Brit1612 Apprentice
Brit1612
Posted
  • Author

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 Apprentice
Brit1612
Posted
  • Author

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 Rookie
murphy203
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jmartes71
      - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets...
    2. Wheatwacked
      - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values. Both are made with sugar, not high fructose corn syrup. I use them as a gluten free substitute...
    3. Theresa2407
      - Theresa2407 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      I see it everyday on my feeds. They go out and buy gluten-free processed products and wonder why they can't heal their guts. I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field. Some days I would just like to scream. So much better when we had support groups and being able to teach...
    4. Scott Adams
      - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    5. Scott Adams
      - Scott Adams replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,263
    • Most Online (within 30 mins)
      7,748
    Fruitypebbles
    Newest Member
    Fruitypebbles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      Doctors and Celiac.com

      By Jmartes71 · Posted

      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Wheatwacked · Posted

      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Have Tru Joy Sweets Choco Chews been discontinued??

      By Scott Adams · Posted

      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Doctors and Celiac.com

      By Scott Adams · Posted

      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.