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

What Else Could Cause A Positive Biopsy?


JessieFree

Recommended Posts

JessieFree Apprentice

I had a positive biopsy and but all my blood tests were normal. My GI said to try the diet FOR 3 MONTHS and if I didn't get better than it was IBS (he says its one of the two but can't be sure which one). He didn't even ask me to come in for a follow up. I went to my family doctor for a second opinion who gave me a food allergy test. It was normal so should told me to go off the diet. As soon as I went off the diet I started getting leg cramps at night again, but other than that didn't feel any worse. I went back on it after a few weeks of lots of gluten. I've been gluten-free for about a month now. I have had no leg cramps but still have the gas/bloating. I don't get diarrhea just constipaton. Does this sound like celiac or are the cramps just a coincidence. I had the leg cramps when I was young but never had any GI symptoms. They stopped for years and just recently came back shortly after my GI problems started. My doctor never told me what could have caused the biopsy to be positive if it wasn't celiac.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Usually, a positive biopsy means that you have celiac disease. The blood tests aren't that sensitive, and you probably had a false negative.

Your regular MD is an idiot, if he/she thinks that celiac disease will show up in allergy testing, since it is NOT caused by an allergy, but by an autoimmune reaction to gluten. Some people with celiac disease will also have an allergy to wheat, but most don't.

Blunted villi can also be caused by a dairy or soy intolerance. Since being on the gluten-free diet is helpful to you, you do have celiac disease, but may also be intolerant to dairy and/or soy.

Dairy is known to cause gas, bloating and constipation, as can gluten. So, you may either not have managed to cut out all the gluten at this point, or you have other intolerances as well. I would recommend cutting dairy out at this point, to see if it helps.

I also had leg cramps as a kid, and my mother was told that I had growing pains. Too bad that those 'growing pains' (there is no such a thing) didn't go away until I eliminated gluten at the age of 52.

One of my grandsons also had those leg cramps, and they went away when his mother put him on the gluten-free diet a few months ago (he is five).

Guest j_mommy

Constipation is a sypmtom of Celiac!

I agree with ursa major n everything....celiac is not an allergy!!!!Jeeez when will Dr's figure that out!!!!

I would stick with the diet....get your scope pics and records from teh GI you went to and find a different one to look atteh pics!

GFhopeful Rookie

i would say to get a second opinion from another GI too. i am waiting to get a second look at my endoscopy as i had negative bloodwork but positive biopsy too. brfore going gluten-free, i did have GI symptoms after months of not having GI symptoms but other symptoms (dizziness, headaches, bouts of illness). It seemed to escalate to GI symptoms and weight loss before i was finally diagnosed. I am doing better on gluten-free but still having really bad bouts so that's why i am getting a second opinion and hopefully further tests to find out what else is going on. i am not a pushy person and it took some time and pushing from family members to make me follow through with this but i think it will be worth it. is there a celiac expert in your area, like a university or something that you could go to? good luck feeling better.

lovegrov Collaborator

A positive biopsy is pretty convincing. From everything I've read, you shouldn't doubt it.

richard

Nancym Enthusiast

Negative blood work means absolutely nothing. About 30% of celiacs have negative blood work if they don't have total villious atrophy. You're just lucky enough you didn't get to that stage before it was caught.

hez Enthusiast

Based on my bloodwork my family doc thought I had borderline celiac (is that like being a little pregnant?). However, my gi did an endoscopy which showed complete villious atrophy. Fast forward two years, I had another endoscopy, I now have fine delicate villi but my small intestine still looks like my stomach.

It sounds like you have celiac. However, if you need another opinion go get it. Just make sure the doc is well versed in celiac or you may cause more damage down the line with an incorrect dx.

Hez


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
Joss Rookie

My doctor told me a positive IgA test was not worth bothering about. I found a gluten free diet helps and is worth bothering about. Find someone who can explain whether it is gluten sensitivity or not. Your health matters both to you and your family.

Archived

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

  • 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. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    2. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    4. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,207
    • Most Online (within 30 mins)
      7,748

    juliemt
    Newest Member
    juliemt
    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

    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
×
×
  • 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.