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

Waiting For Biopsy Results..


Jsny1010

Recommended Posts

Jsny1010 Rookie

Hi everyone, first time posting here..

Ive been living with what my doctor has called IBS for about 5 years now, about 6 months ago he ran the blood tests and some came back positive.. not sure which ones but he refereed me to a specialist (GI) I think he thinks im just lactose intolerant but he suggested we do a biopsy to confirm or not the presence of celiac's, this is the question.. yesterday we did the biopsy, after the test he said everything looked OK but the biopsy results wont be in for a week or so, since it looks "OK" is that a good sign that it might not be Celiac's? should the doctor be able to see apparent damage with his scope? Just curious I hate waiting..


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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

The damage they look on your biopsy is microscopic. They are looking for damage to the tiny, fingerlike projections on your intestinal lining, called villi. If the celiac is really severe the Dr. can see inflammation or visible changes to the shape of the intestines, called scalloping, but usually things looking OK to the naked eye doesn't mean much. Sorry.

As far as the blood tests, do you know what was positive? The biopsy can show false negative. Celiac damage can be patchy and inexperienced doctors do not take enough biopsy samples. You should still go off gluten if you had positive celiac blood tests - you might be rid of that pesky IBS for good!

I had "IBS" for years. Two weeks off gluten and it was better. Two months and it was completely gone. B)

Jsny1010 Rookie

I cant remember but i think it was the anti-gladlin or something like tgt-a or ATgt the doctor said it pretty fast, that was in the high 20's where it should have been below 11, and one other was elevated but my regular doctor gp didnt want to interpret the resulds so he sent me to the gi guy.. i guess i just have to wait for the results though he seems like he has been doing this for years, the doctors in his 70's i think lol

mushroom Proficient

It is always a good idea to get copies of all your testing results. Sometimes doctors just glance at them and do not give you the correct information. Other times if something is just slightly abovve normal they will call it negative. If I were you I would get a copy of my blood results, and we would all love if you would post them here, with the ranges, so we got a chance to interpret them too :)

Jsny1010 Rookie

Will do, i'll see my GP tomorrow - i'll ask for a copy and see what it says and post it here, im glad there are web groups like this one weather it turns out im positive or not

Roda Rising Star

It doesn't mean a hill of beans that he said your intestines looked alright visibally with his eye. The pathologist has to look at it microscopically. I was told by my GI that my intestinal lining look mostly good with only slight inflammation. My biopsy was positive with villi blunting. Even with that and my positive blood work he "gave" me the option to go gluten free immediatly or recheck everything in three months. Huh? I went gluten free and I was diagnosed with celiac.

Even if your biopsy comes back negative, give the diet a try anyway. It sounds like you are celiac. Biopsies can have false negatives due to: inexperienced GI, inexperienced pathologist intepereting the samples, too few samples taken, patchy damage that is missed on biopsy, damage past the area the scope can reach.

Jsny1010 Rookie

Here are my blood test results..

Gliadin IgA Antibodies 7

Gliadin IgG Antibodies 28

Transglutaminase IgA 3.5

Transglutaminase IgG 4.4

Not sure about the endomysial its confusing but says

Endomysial IgA. Positive REFERENCE RANGE:

Negative. Endomysial AB (IgA titer) 1:10 titer. Reference Range: < 1:5

Not sure what that means. My regular doctor didn't have any info.


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



Celiac.com Sponsor (A8-M):



Jsny1010 Rookie

Oh and the ranges..

<11

<11

<4

<6

And titer 1:5

Skylark Collaborator

Endomysial IgA. Positive REFERENCE RANGE:

Negative. Endomysial AB (IgA titer) 1:10 titer. Reference Range: < 1:5

Not sure what that means. My regular doctor didn't have any info.

It means you're celiac. You don't need to wait any more.

Endomysial IgA is an autoimmune antibody to your intestines that is very specific for celiac disease. You need to be on the gluten-free diet because even if your biopsy is negative now and your doctor doesn't diagnose celiac it's usually only a matter of time before the autoimmune damage gets bad enough to see on biopsy. The anti-gliadin IgG shows that the endomysial is not a mistake and you are reacting to gluten along with the autoimmunity.

When they test endomysial antibodies they dilute your blood. The more they can dilute it and still get a reaction, the more antibodies you have. A normal person's serum is not reactive at 1:5. Your serum was still reactive at 1:10, meaning you have at least twice the "normal" amount of endomysial antibodies.

Jsny1010 Rookie

It means you're celiac. You don't need to wait any more.

Thanks, I didnt realize that was the important part of the test, ive been mostly gluten free since December but im thinking i might as well go 100% off gluten and get rid of the issues I have with food!

Takala Enthusiast

Even if the Gastro doc's office calls you back and says that the biopsy was "negative," you should go on a true gluten free diet anyway.

Lactose intolerance is also a sign of celiac, you may heal up enough to be able to eat cheese and yogurt again.

Some doctors still use the so-called "gold standard" of insisting that both the blood tests AND the biopsy be positive for damage before bestowing the Official Celiac Diagnosis Seal of Approval

Jsny1010 Rookie

Thank you everyone,

Takala, yeah my GP told me "If the result comes back negative you dont have celiac" but I think some of the people on here have done more research and study on the bloodwork and celiac disease than he has.. i'll find out what they tell me on Monday, the doctor WONT tell me over the phone its been a nightmare this week, their "sedation" didnt work on me so i got the awesome experience of having a scope put down my throat, atleast I got some good food after it was over.

Today is my Day #1!

Skylark Collaborator

Yay! Welcome to the gluten-free club. I hope you feel a lot better off gluten.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    2. - Juliane replied to Colleen H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy

    3. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    4. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Stomach burning and neuropathy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,842
    • Most Online (within 30 mins)
      7,748

    Julia Duffee
    Newest Member
    Julia Duffee
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Does anyone know if that includes scrambled eggs and healthy smart butter (,gluten free) I add a very tiny amount of margarine less than a teaspoon.  I did no't have any bread    It just seems like no matter what I eat my stomach and nerves over fire and here comes a host of horrible symptoms. My lower abdomen feels horrible, my right leg thigh muscle.. very odd. Jaw pain. Burning feet , joint pain , you name it  The anxiety just creeps up into brain fog. I don't think I could explain this to anyone who is unfamiliar.  Also,  I most likely will not remember posting this until I check it.  This is highly unusual for me because I have an excellent memory.  One weekend before I knew anything about celiac I lost an entire weekend from severe brain fog, confusion, pain, etc.  I honestly thought I was losing my mind. When I think back I recall eating a lot of PBJ sandwiches and turkey sandwiches.  Once again did not know about gluten.  I was just too sick to cook. Do people fast during attacks ?? It seems horrible to keep going through this. I hope I'm not causing my own problems... I wonder if I should fast because I'm not eating gluten .  Chicken ,  scrambled eggs no milk , canned carrots,  gluten free low sugar low fat Greek yogurt which I already posted about 😞 Any suggestions I am open... I am bedridden when this happens to me.  Thank you Celiac community. 🙏🏻❤️      
    • Juliane
      Yeah, that sounds super familiar. When inflammation levels are high — especially at the start of changing your diet — the body often develops a fructose and lactose intolerance. Unfortunately, the only thing that really helps is cutting out anything that isn’t lactose-free or that contains sugar. So basically, stick to meat, veggies, fish…
    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
×
×
  • 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.