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. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    2. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    3. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    4. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    5. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
×
×
  • 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.