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

What Do You Think?

mysterypain

Recommended Posts

mysterypain Rookie
mysterypain
Posted

I have been suffereing with strange symtoms for three years. It wasn't until my doc sent me for a celiac screen (blood test) that I suspected or even heard of it. I went off of gluten after the test. I felt soooo much better. The test came back negative and she told me that it was a very accurate test, I don't think this is my imagination. If I eat gluten I feel very dizzy, lose the feeling in my extremities and get horrible pain through my chest that spreads, like heart attack pain, I feel very tired and almost insane. I don't recognize myself. I asked her if I could be sensitive and not celiac, she really didn't know what to say other than stay away from gluten. Could the test be wrong? Or should I accept this answer? I know the bottom line is that I feel better no matter what anyone says. I was just wondering what you guys would think of this result? Thanks for a great place to chat!! :D

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

Hi mysterypain! Welcome to the board! To answer your question, all doctors think the bloodwork is a very accurate test but it's not! Yes you can have negative blood-work and biopsy and still have Celiac Disease! The fact that you felt better after going gluten-free is a very good sign that you have celiac disease, not to mention the symptoms you experienced when you ate gluten.

If you need a docs diagnosis I would suggest using Open Original Shared Link stool panel test and it's accurate!

I hope this helps! :D

simply Newbie
simply
Posted

Yeah...

I'm going through the same thing right now. I have all the symptoms...bloating, diarrhea, upset stomach, floating stools, hair falling out...everything except being underweight. Except the Gliadin IgG, which was a weak positive, all the lab tests have come back negative.

However, after reading some information on the www.enterolab.com site, it appears as though the EMA test is very specific but not very sensitive. This means that if it is positive, there is no possible way it is a false-positive...you have Celiac. However, it being negative doesn't mean much.

It being negative only means that the villi in the small intestine have not yet totally atrophied. This is because it is a blood test, and for the antibodies to get from your small intestine to the blood there must be some major, major damage. Only 30% of the people with partial villi-atrophy tested positive on the EMA / transglutamine tests even though there was, indeed, some damage to the villi.

I may be spelling some of these words wrong (sorry about that), but if you go the thread I started today (I'm Simply), gf4life has posted some links that give more details.

You ought to check them out.

Simply

ChrissyInNH Rookie
ChrissyInNH
Posted

Hi!

I am new here too. I feel like I am going through the exact same thing! I just got my test results and they were "normal". I'm not sure which my doctor ordered but she sent me the results so I'll know soon.

Good luck! Hopefully we'll both find some answers.

Chris

Archived

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

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


  • Member Statistics

    • Total Members
      130,015
    • Most Online (within 30 mins)
      7,748
    Krista Silcox
    Newest Member
    Krista Silcox
    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

    • 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.
    • Scott Adams
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Scott Adams · Posted

      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      How many people also get sick from the following prolamins?

      By Scott Adams · Posted

      Exactly, everyone with celiac disease technically has an "intolerance" to these: Wheat: The prolamin is called gliadin. Barley: The prolamin is called hordein. Rye: The prolamin is called secalin. Around 9% of celiacs also should avoid oats (but around the time of diagnosis this may be much higher--some will have temporary intolerance): Oats: The prolamin is called avenin. I had to avoid this for 1-2 years after my diagnosis until my gut healed: Corn: The prolamin is called zein. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...