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

Test Results

The Glutenator

By The Glutenator
in Doctors

Recommended Posts

The Glutenator Contributor
The Glutenator
Posted

Hello,

I have been having some gastrointestinal symptoms for a while now and my doctor finally ran a blood test for celiac. My initial symptoms were bloating (looked pregnant), gas, very frequent trips to the washroom, food cravings, and fatigue. As I understand it my immunoglobin levels were very high, even for celiacs (my levels were 52 and normal is less than 20 according to my doctor). I then went for a biopsy and went gluten-free immediately after that. After about 5 weeks I am feeling a lot better. The gas went away very quickly and the bloating and other GI symptoms are getting much better. My energy level is also up 110%. Imagine my shock, then, when the biopsy came back negative. My doctor said he hadn't seen this before and said the blood test almost never gave false positives. I am completely convinced I have celiac disease, especially since the sensitivity of the blood test is so high and all my symptoms are going away, but the negative biopsy was frustrating. My doctor won't officially call me a celiac without the positive biopsy, but isn't recommending a gluten challenge and second test because all my symptoms will come back. Has anyone else had a positive blood test and negative biopsy? What are your suggestions from here? Thanks!

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

Celiac.com Sponsor (A8-M):


elle's mom Contributor
elle's mom
Posted

Hello,

I have been having some gastrointestinal symptoms for a while now and my doctor finally ran a blood test for celiac. My initial symptoms were bloating (looked pregnant), gas, very frequent trips to the washroom, food cravings, and fatigue. As I understand it my immunoglobin levels were very high, even for celiacs (my levels were 52 and normal is less than 20 according to my doctor). I then went for a biopsy and went gluten-free immediately after that. After about 5 weeks I am feeling a lot better. The gas went away very quickly and the bloating and other GI symptoms are getting much better. My energy level is also up 110%. Imagine my shock, then, when the biopsy came back negative. My doctor said he hadn't seen this before and said the blood test almost never gave false positives. I am completely convinced I have celiac disease, especially since the sensitivity of the blood test is so high and all my symptoms are going away, but the negative biopsy was frustrating. My doctor won't officially call me a celiac without the positive biopsy, but isn't recommending a gluten challenge and second test because all my symptoms will come back. Has anyone else had a positive blood test and negative biopsy? What are your suggestions from here? Thanks!

False negatives on biopsies are very common. It just means that there are some areas of your small intestine that aren't completely demolished and your surgeon managed to biopsy this area rather than an area that has been affected. The damage to your intestine may but patchy, but that doesn't mean you do not have celiac disease. Although with the positive dietary response, it does mean you can at least consider yourself non-celiac gluten sensitive. Your doctor should know this, if he does not then I would be apprehensive in trusting him to further manage your condition.

I would recommend the book "Healthier Without Wheat" by Dr. Stephen Wangen. It explains all about the different tests for celiac and gluten sensitivity and does a good job of differentiating between the two.

Although the biopsy is still considered the "gold standard" for the celiac diagnosis, there's nothing saying you can't just go on eating gluten free without it if it makes you feel better, it's up to you though; don't let your doctor tell you to go back on gluten. All you'd be doing by going back to gluten is waiting until it further damages your health. This is very unfortunate.

Just as a side note too, I'm not exactly sure 52 is a really high level (I've heard of some being in the 100's or even over 1000 as in my daughter's case), but that doesn't mean anything. It is true that false positives are slim to none, so I would definately not entertain that idea. It's like pregnancy, either you are or you aren't, the value of the number is irrelevant. Good luck to you.

Archived

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

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


  • Member Statistics

    • Total Members
      130,016
    • Most Online (within 30 mins)
      7,748
    Oh My Paws
    Newest Member
    Oh My Paws
    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

    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill certified gluten-free. Good luck everybody this autoimmune disease is wicked wicked
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      I have been using a little bit of Lubriderm when I wash my hands because it’s the lotion offered at a place I frequent once a week. Assuming it was gluten-free I bought a bottle. I couldn’t figure out why I was getting gluten EVERY night. I use a little of the lotion in the morning on my neck, with no reaction, but at night, I use it on my arms and legs and face and get gluten gut pretty bad. After eight nights of having to have diphenhydramine injections for severe gluten, I googled “is Lubriderm gluten-free” and it led me to this forum. I am going to go back to olive oil as I have been gut sick sooooooo bad with a huge gut and pain eight days in a row now. Sick of feeling sick.
    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      These look great!  I follow several people who frequently post gluten-free recipes online (plus they sell their cookbooks). "Gluten Free on a Shoestring" and "Erin's Meaningful Eats>"
    • Scott Adams
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Scott Adams · Posted

      Sounds great, we also have lots of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/
    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      When I had to go gluten-free, the rest of my family still ate gluten. They still eat regular bread products and crackers, but there are no other gluten-containing foods in the house. I bought a separate toaster that is only used for gluten-free products, and thoroughly cleaned all cookware, dishes and surfaces. We do have to be very careful with cross-contact, for instance when someone else is making a sandwich with wheat bread. Then I went through my cupboards and pantry, I set aside everything else with gluten and gave it away - flour and baking mixes, pasta, etc. So when I cook any recipe that calls for flour (perhaps for thickening) or bread crumbs like Panko, I only use gluten-free. My cupboard now holds gluten-free baking flour, tapioca flour, rice flour, almond flour, gluten-free oats, gluten-free grits, gluten-free cornmeal, and a few gluten-free baking mixes for occasional use. On the odd occasion when we have pasta, it is gluten-free - nobody notices the difference in the "new" lasagna. I have found several good recipes that are gluten-free and everyone loves them. A family favorite is the Tarta de Santiago, a naturally gluten-free treat made with almond flour.
×
×
  • Create New...