Jump to content

  • 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):

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...