Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Do I Really Need A Biopsy?


BlueBridie

Recommended Posts

BlueBridie Newbie

Hi There,

I'm new, but have posted a few replies already. I do however have some questions regarding my diagnosis.

My doctor ran many food allergy tests, and when the results came back he told me everything was normal except I had high protein levels indicating inflammation, and the test for Celiac Disease was positive. He did mention that Drs usually send patients with positive results to a specialist to get a biopsy, but he suggested I just 'google Celiac and start a Gluten Free diet immediately'. So I did. That was 8 days ago, and although I'm still having some trouble, I actually feel better (and have discovered what 'normal' poop is!!)

My husband, bless him, was very upset to hear that I won't be eating Gluten any more, particularly as I've been lactose intolerant for years (although I'm told this may go away) and has suggested that I should ask to see a specialist to get a proper definite diagnosis.

What should I do? I trust my Dr and if he tells be he's certain I have it, I'm happy. But I would hate to find out after several years of being Gluten free that I'm actually not, or worse, having to do a 'gluten challenge' which sound very unpleasant!

If I do request to see a specialist, and if I get a biopsy quickly, surely being gluten free for a week or two wouldn't make that much difference to the results? Would it?


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



Celiac.com Sponsor (A8-M):



LDJofDenver Apprentice

Hi There,

I'm new, but have posted a few replies already. I do however have some questions regarding my diagnosis.

My doctor ran many food allergy tests, and when the results came back he told me everything was normal except I had high protein levels indicating inflammation, and the test for Celiac Disease was positive. He did mention that Drs usually send patients with positive results to a specialist to get a biopsy, but he suggested I just 'google Celiac and start a Gluten Free diet immediately'. So I did. That was 8 days ago, and although I'm still having some trouble, I actually feel better (and have discovered what 'normal' poop is!!)

My husband, bless him, was very upset to hear that I won't be eating Gluten any more, particularly as I've been lactose intolerant for years (although I'm told this may go away) and has suggested that I should ask to see a specialist to get a proper definite diagnosis.

What should I do? I trust my Dr and if he tells be he's certain I have it, I'm happy. But I would hate to find out after several years of being Gluten free that I'm actually not, or worse, having to do a 'gluten challenge' which sound very unpleasant!

If I do request to see a specialist, and if I get a biopsy quickly, surely being gluten free for a week or two wouldn't make that much difference to the results? Would it?

My doctor also told me that I did not need the small bowel biopsy. He said all my bloodwork was positive for it, plus I had a first-degree relative with it, so he said it was unnecessary (at least in terms of using it as a diagnostic tool).

However, a few months later I referred myself to a GI doc, just for a consultation and the first thing out of their mouths was that I needed to have an endoscopy!

They said it is not just for diagnostic purposes, that they biopsy for specific markers, and level of damage to villi. Plus, you may have some related esophageal issues if you've suffered with celiac disease long enough, have had acid reflux because of it, or many years of being sick (vomiting). I did, and was unaware and am now on prescription Prilosec.

I'd suggest a consultation with a G.I. doc and go from there, on their recommendation (GI docs often have a different take on things than your GP). Unlike blood tests, you most likely will not have to eat gluten again for your endoscopy, as the damage doesn't heal very quickly in the small intestine.

Skylark Collaborator

Hi, there.

If you had anti-endomysial antibodies in your blood, you need to be off gluten no matter what. Even if you have a normal biopsy, people with those antibodies usually eventually end up with intestinal damage. The celiac blood tests should fall to normal in six months to a year of eating gluten-free, so you can follow it up that way with your normal doctor.

If you want to go with the GI specialist he will almost certainly want to scope you and biopsy. They like to have a look around and check for other kinds of damage. A couple weeks gluten-free won't reverse any celiac damage, but you really should go back on gluten if you feel like you need positive results to convince your husband.

By the way, a lot of celiacs are lactose intolerant and find they can digest lactose again once their villi heal.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,005
    • Most Online (within 30 mins)
      7,748

    Ellen Watts
    Newest Member
    Ellen Watts
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • wellthatsfun
      i am australian. we do have plenty of substitutes, but most are very expensive compared to the originals. i believe i'll just stick to home cooked meals and not have many treats at all. it's sad but it's just so much easier. also, ive heard far too many horror stories of people ordering gluten free food from restaurants and cafés, explicitly telling servers and kitchen staff that cross contamination is a strict no go, and they still get very sick. until i find a reasonably priced fully gluten free kitchen somewhere, i am not eating out for my safety and sanity.
    • wellthatsfun
      thank you all for the kind words and support. it truly means a lot. i know i will adapt, it really just is a grieving process right now though. looking forward to feeling healthier!
    • The Logician
      To Trent’s, yes, from what i’ve read it is not uncommon for digestive systems to become less tolerant to gluten over time. Many types of sensitivity or allergies arise in older people who never had a problem. I don’t see why you are focusing on anything but the fact that after years of my sensitivity to gluten, for whatever reason , it has disappeared after a bout of antibiotics. What i’ve read is antibiotics can make gluten sensitivity worse. In any event, in my case, if I can still eat all the wheat products I want with no reaction after a month or more since my hospital stay this is something that should be investigated. Time will tell.
    • The Logician
      I had a UTI, blood cultures are standard to insure that the infection does not get in the bloodstream which can lead to sepsis and death. In my case there was bacteria in my blood which necessitated 48 hours of antibiotic IV
    • Wends
      Hi Cameo674. just read your post. Well wishes to a correct diagnosis so that you can get on track to healing and feeling better. Personally I know it’s good to have the eosinophilic disorder ruled out too, as this can show anti-ttg igA antibodies too. But usually without the anti-gliadin antibodies unless gliadin is an allergen for you. Thanks for posting the link to look up SNPs rs… numbers on another post. Was useful. Looking at your result, ”Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies?” To me it reads.that you carry the high risk HLADQ2.5 haplotype.      
×
×
  • Create New...