Jump to content

  • 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):

Pondering Skipping Biopsy...

glutenfreejd

Recommended Posts

glutenfreejd Newbie
glutenfreejd
Posted

Hi everyone, I'm new to the forum. A few months ago I had a positive blood test for celiac and was referred to a specialist for a confirmation biopsy. In the meantime I went gluten free as my symptoms had become so bad I was having difficulty working. The other day I got a call back from the clinic with my appointment date, but now I'm not sure I want to do it as I would have to start eating gluten again for it to be accurate. Since I've been dating gluten free I've noticed I've become even more sensitive, if I accidentally eat something a bit contaminated I have a pretty strong reaction. Is there any benefi to the biopsy that would compel me to go through this process I imagine to be so horrible? Thanks:)

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

Celiac.com Sponsor (A8-M):


Katrala Contributor
Katrala
Posted

Most doctors will tell you to not go gluten-free until the biopsy.

The good thing about the biopsy is that you'll have a baseline and any other problems can be discovered.

Also, you'll have a 100% diagnosis.

If you're OK with not having an official diagnosis (you may find a doctor who will diagnosis without, though,) then go ahead and skip it.

From personal experience, I was glad I had it. But there are many people here who didn't and are still happy with their choice.

MitziG Enthusiast
MitziG
Posted

Dr Alex Fasano is considered THE leading expert on Celiac Disease. He recently stated this in Gluten Free Living Magazine:

"I was the one who said the gold standard was the biopsy. Now

I am saying I was wrong.

The blood tests are extremely accurate at showing a positive Celiac. False negatives- very common. False-positive? nope.

You have Celiac Disease. You can have a biopsy, but, since you have been gluten free for awhile, even if you go back on it for weeks, or months...there may not be enough damage to show positive in a biopsy.

They may do the biopsy, and not take enough samples, or not take them from the right spots, and miss the damage. Celiac is often patchy.

Or they may biopsy damaged areas, and the lab tech who reads the samples may not be experienced, and may miss it.

So...if you get a negative biopsy- what will you do? Probably start questioning yourself. Doctors cant see beyond lab results generally, and they will most certainly dismiss it, and say all of your problems are not from Celiac, and write you a rx for antidepressants.

That said, I had the biopsy, and it was positive, and I needed that confirmation to resolve to stick with the diet. But I also had not been gluten free when I had it.

Not saying you shouldn't do it...but be prepared for the very real likelihood that it will deny what is most definitely true.

Lisa Mentor
Lisa
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

MitziG Enthusiast
MitziG
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

This is a very valid point. I am not against biopsy, by any means. I just worry that people feel they aren't a "real celiac" without that dang biopsy report!

luvs2eat Collaborator
luvs2eat
Posted

Apparently my blood test was SO positive that my doctor told me biopsy wasn't necessary! I ended up having one several years later for heartburn/GERD issues and there were celiac indications in there, but as it turned out, the biopsy really wasn't necessary. The blood tests told me what I needed to know... NO MORE GLUTEN FOR ME!!

glutenfreejd Newbie
glutenfreejd
Posted
  • Author

Thanks everyone, that was really helpful. No test for me!! I don't feel like a slip of paper will make me feel any better. I've been feeling so great, I don't want to mess with it. Thanks again!!

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

Celiac.com Sponsor (A8-M):


Mom-of-Two Contributor
Mom-of-Two
Posted

My bloodwork was also super positive, I see the GI this Thursday and am also thinking I may not do a biopsy. If you are feeling better, I would hate to see you reintroduce gluten :( sounds like you have your answer!

Archived

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

Go to topic listing

  • 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. Scott Adams
      0

      This Common Blood Pressure Drug Can Mimic Celiac Disease Symptoms

    2. Russ H
      - Russ H replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      8

      Celiac flare years after diagnosis

      Bread has about 8 g of protein per 100 g, so a piece of bread weighing 125 mg contains 10 mg of gluten. Bread has a density of about 0.25 g/ml, so 0.5 ml of bread contains 10 mg of gluten - i.e. a bread ball 1 cm in diameter. I think it would be unlikely to ingest this much from throwing bread out for the birds.
    3. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      Sciatica came to mind for me as well. You might want to get some imaging done on your C-spine.
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      Maybe this is sciatica? When mine acts up a little, I switch my wallet from one back pocket to the other. this isn't a substitute for more serious medical help, but for me it's a bandaid.
    5. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      OK so I just learned something completely new about this for the first time in years, that is REALLY WEIRD. One of my nerves that likes to "burn" or whatever is doing it every time I bow my head! I mean it is completely repeatable. Literally every time. Once my head goes beyond a certain angle *boom*. Nerve goes mental (lower right leg pain). What the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,063
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      Bread has about 8 g of protein per 100 g, so a piece of bread weighing 125 mg contains 10 mg of gluten. Bread has a density of about 0.25 g/ml, so 0.5 ml of bread contains 10 mg of gluten - i.e. a bread ball 1 cm in diameter. I think it would be unlikely to ingest this much from throwing bread out for the birds.  
    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Sciatica came to mind for me as well. You might want to get some imaging done on your C-spine.
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      Maybe this is sciatica? When mine acts up a little, I switch my wallet from one back pocket to the other. this isn't a substitute for more serious medical help, but for me it's a bandaid.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      OK so I just learned something completely new about this for the first time in years, that is REALLY WEIRD. One of my nerves that likes to "burn" or whatever is doing it every time I bow my head! I mean it is completely repeatable. Literally every time. Once my head goes beyond a certain angle *boom*. Nerve goes mental (lower right leg pain). What the hell. I've never seen a direct trigger such as this before that I can recall. The pain was the usual type I get from this problem - I suspect somehow the head movement was interrupting descending inhibition processes, causing the pain to leak through somehow.
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      I've only made this a couple of times but it's really easy and I love the flavor. If you can, use all of the ingredients to get the full palette of flavors. I use fresh or canned tomatoes and I don't worry about peeling them. If you don't have harissa, there are replacement recipes online. If you don't have the greens, I suggest adding a little chopped baby spinach or celery leaves to add a dash of green color to this red dish. Best eaten in first couple days because flavor tends to fade. Leftovers are still good, but not as vibrant. Ingredients 2 medium eggplants, partially peeled and cut into cubes (original recipe says 1 in, but I prefer 1/2 to 3/4 in) 2 tomatoes, peeled and crushed 4 garlic cloves, finely chopped or minced 1 tablespoon fresh flat-leaf parsley, chopped 1 tablespoon fresh cilantro, chopped ¼ cup extra virgin olive oil 2 tablespoons spicy harissa (I use Mina brand) 1 teaspoon cumin 1 teaspoon paprika ½ teaspoon black pepper 1 tablespoon apple cider vinegar or lemon juice 1 tablespoon tomato paste (optional) Salt to taste Preparation     • Heat olive oil in skillet or pot over medium heat. Add all ingredients and cook for 10 minutes, stirring occasionally. Cover and cook on low heat for an additional 20 minutes, stirring occasionally.       • Serve warm or cold as a side or with bread for dipping. Enjoy! Original recipe is here, if you want to see photos: mina.co/blogs/recipes/zaalouk-moroccan-eggplant-salad  
×
×
  • Create New...