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

Help! Biopsy? Should I Do It?


BrittLoves2Run

Recommended Posts

BrittLoves2Run Apprentice

Hey guys.

I got the news yesterday that my Celiac panel came back with


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



Celiac.com Sponsor (A8-M):



JonnyD Rookie

Completely your call. If it were me, I'd stay on gluten for now and have the biopsy. Knowledge is power. Plus, positive bloodwork with a positive biopsy make the diet easier to stick to.

Aly1 Contributor

You likely would have a negative result 2 months down the road so you're right that you need to make the decision now. It's a personal call. If you no longer had the option of having a biopsy (because too much time had passed and it would no longer yield correct results) would that bother you? Some of us really want a dx; others don't really need it.

I *think* if my celiac bloodwork came back positive, I would not really need the biopsy...but I'm not sure. I have seen some recent research out there where calling the biopsy the "golden standard" is being argued against by many in the field; I suspect in a few years they will no longer be doing it so much. But that's just a guess.

Again, the call is yours. It may be that your doc will not formally dx you as celiac if you do not have the biopsy. Something to find out / consider...

BrittLoves2Run Apprentice

Completely your call. If it were me, I'd stay on gluten for now and have the biopsy. Knowledge is power. Plus, positive bloodwork with a positive biopsy make the diet easier to stick to.

So i'm not stupid for making the doctors appointment? my mother says i'll piss off my doctor. I'm not trying to insult him, but the man didn't even want to test me for Celiac claiming "it was highly unlikely" and then I came Positive.

BrittLoves2Run Apprentice

You likely would have a negative result 2 months down the road so you're right that you need to make the decision now. It's a personal call. If you no longer had the option of having a biopsy (because too much time had passed and it would no longer yield correct results) would that bother you? Some of us really want a dx; others don't really need it.

I *think* if my celiac bloodwork came back positive, I would not really need the biopsy...but I'm not sure. I have seen some recent research out there where calling the biopsy the "golden standard" is being argued against by many in the field; I suspect in a few years they will no longer be doing it so much. But that's just a guess.

Again, the call is yours. It may be that your doc will not formally dx you as celiac if you do not have the biopsy. Something to find out / consider...

Personally, Just hearing that it came back Positive has been good enough. I just don't want to hear that 2 months down the road my doctor insists on doing the EGD. I'm more concered about the thyroid and it being maybe higher than it should.

sa1937 Community Regular

If you are going to have an endoscopy, you need to stay on gluten until it's done. Otherwise you may come up with a negative biopsy. If you have had a positive celiac panel, there's no doubt in my mind that you have it. False negatives are fairly common but not false positives.

When you see your doctor today, make sure you pick up a printed copy of your test results. And ask questions you may have as to why he wants you to go gluten-free and then come back in two months ??? Maybe he's willing to diagnose you without an endoscopy.

With a TSH reading of 4.5, you may want to ask for a referral to an endocrinologist.

Edit: After reading your last post, who cares if you piss off the doctor? We need to be our own advocates!!!

Ollie's Mom Apprentice

I would find out if he will give you a diagnosis based on the bloodwork alone. If yes, then a biopsy isn't necessary for a dx and I personally wouldn't put myself through it.


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



Celiac.com Sponsor (A8-M):



BrittLoves2Run Apprentice

I would find out if he will give you a diagnosis based on the bloodwork alone. If yes, then a biopsy isn't necessary for a dx and I personally wouldn't put myself through it.

I saw my doctor this afternoon. He said only one of my numbers came back high and it showed a more "chronic problem" i can't remember what number he said it was but he said normal is under 11 and mine was in he 60's. He said he thinks it's what I have and he'd like me to try the diet 2-3 months. If I am feeling better then he will diagnose off of that alone without putting me through a biopsy. He didn't seem concerned about my thyroid stating that "you can't believe anything you come across on the internet" and "some people WANT to have these illnesses" This really irks me knowing all the women in my family are on medication for under active thyroid!

BrittLoves2Run Apprentice

I'm pretty sure the doctor said IgA was the one that was way above normal. Where 11 or under being normal,I was in the 60's.

ravenwoodglass Mentor

I saw my doctor this afternoon. He said only one of my numbers came back high and it showed a more "chronic problem" i can't remember what number he said it was but he said normal is under 11 and mine was in he 60's. He said he thinks it's what I have and he'd like me to try the diet 2-3 months. If I am feeling better then he will diagnose off of that alone without putting me through a biopsy. He didn't seem concerned about my thyroid stating that "you can't believe anything you come across on the internet" and "some people WANT to have these illnesses" This really irks me knowing all the women in my family are on medication for under active thyroid!

You may want to consult with an endocrinologist for the thyroid issues. As far as the celiac goes IMHO your doctor is spot on. If the diet solves your issues and the repeat bloodwork done at 3 to 6 months shows your levels have gone down then you are diagnosed. Your doctor does sound like a bit of a jerk though.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    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

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.