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
BrittLoves2Run
Posted

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
JonnyD
Posted

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
Aly1
Posted

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
BrittLoves2Run
Posted
  • Author

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
BrittLoves2Run
Posted
  • Author

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
sa1937
Posted

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
Ollie's Mom
Posted

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
BrittLoves2Run
Posted
  • Author

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
BrittLoves2Run
Posted
  • Author

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
ravenwoodglass
Posted

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.

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


  • Member Statistics

    • Total Members
      132,142
    • Most Online (within 30 mins)
      7,748
    Jeaneneve
    Newest Member
    Jeaneneve
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
×
×
  • 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.