Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

? About # Of Biopsies....confused....

carecare

Recommended Posts

carecare Enthusiast
carecare
Posted

My son met with the Ped. GI doctor that specializes in celiac disease at Children's Hospital in Milwaukee last week. I asked the nurse how many biopsies would be taken during his endoscopy in December and she said 8...then she said...2 in the esophagus, 4 in the stomach and 2 in the lower intestines. Shouldn't it be more in the intestines...and why so many in the stomach. My son wasn't even having stomach issues that brought him in...he was having muscle pain and mouth sores...and constipation (which came be full force and worse once gluten was added back into his diet last week). I go back on Friday to an appointment with him again...so we can set up an endoscopy for my 18 yr old daughter. She started college and is having a heck of a time with all the gluten foods in the cafeteria and is ready to be tested. Should I inquire about them doing more than just 2 biopsies of the small intestine? Why would they do so many in the stomach and the esophagus when the complaints aren't there. Should I insist they do more than 2?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

My son met with the Ped. GI doctor that specializes in celiac disease at Children's Hospital in Milwaukee last week. I asked the nurse how many biopsies would be taken during his endoscopy in December and she said 8...then she said...2 in the esophagus, 4 in the stomach and 2 in the lower intestines. Shouldn't it be more in the intestines...and why so many in the stomach. My son wasn't even having stomach issues that brought him in...he was having muscle pain and mouth sores...and constipation (which came be full force and worse once gluten was added back into his diet last week). I go back on Friday to an appointment with him again...so we can set up an endoscopy for my 18 yr old daughter. She started college and is having a heck of a time with all the gluten foods in the cafeteria and is ready to be tested. Should I inquire about them doing more than just 2 biopsies of the small intestine? Why would they do so many in the stomach and the esophagus when the complaints aren't there. Should I insist they do more than 2?

Yes, I should think so. But the other samples will be considered for other issues, or to rule them out.

Link to comment
Share on other sites
soltd Newbie
soltd
Posted

I have all the symptoms of celiac and was diagnosed with IBS 8 years ago. Symptoms have gotten progressively worse and doctor ran blood tests for celiac. Two out of the three tests came back positive for celiac so a biopsy was recommended. Biopsy was done and doctor said everything looked ok. Still waiting for biopsy results. My question is can everything look ok (meaning no visible results of atrophy) and still have a biopsy that comes back positive for celiac?

Link to comment
Share on other sites
sa1937 Community Regular
sa1937
Posted

I have all the symptoms of celiac and was diagnosed with IBS 8 years ago. Symptoms have gotten progressively worse and doctor ran blood tests for celiac. Two out of the three tests came back positive for celiac so a biopsy was recommended. Biopsy was done and doctor said everything looked ok. Still waiting for biopsy results. My question is can everything look ok (meaning no visible results of atrophy) and still have a biopsy that comes back positive for celiac?

I would say you have celiac if the blood tests were positive. It would be highly unusual (unless damage was really severe) to visually see villous atrophy with the naked eye. That's why a pathologist will examine the biopsies under a microscope. Make sure you pick up copies of the blood tests and pathology report so you can keep them on file.

Since you have already had biopsies done, you can start a strict gluten-free diet without waiting for your follow-up appointment. And welcome to the forum!

Link to comment
Share on other sites
Roda Rising Star
Roda
Posted

I would insist that at least 8 samples are taken just in the small bowel in different spots along with the other biopsies in the esophagus/stomach too.

Link to comment
Share on other sites
chrissyinnj Apprentice
chrissyinnj
Posted

According to recommendations by the AGA it is supposed to be 4-6 in the decending duodenum.

Link to comment
Share on other sites
carecare Enthusiast
carecare
  • Author
Posted

Thanks everyone. I will ask him about this and request more from the small intestines for sure. I bring my 18 yr old daughter in on Friday so she can schedule that endoscopy for winter break. I hope he is receptive to my request :blink:

I also hope he has some suggestion about whether we should continue on eating gluten. 12 yr old is suffering(muscle pain, canker sores and constipation + gas pain)...10 yr old not as much but daily stomach pain and exhaustion. Both are sleeping 2 hours longer than they normally do each morning...and this is a week back on gluten. We have to go on like this until Dec. 16th if we want any diagnosis. Who knows...we might just decide it's not worth it and end this gluten poisoning soon.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Lymph nodes

      By Smith-Ronald · Posted

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Trying to read my lab results

      By Bayb · Posted

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
    • Aussienae
      Constant low back, abdominal and pelvic pain!

      By Aussienae · Posted

      I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 
×
×
  • Create New...