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

Blood Test And No Endoscopy?


hilwacat

Recommended Posts

hilwacat Rookie

My doctor diagnosed me with Celiac based on positive Endomysial AB and Transglutaminase IGA tests. She told me that the results were virtually 100% accurate and that I do not need further testing, but when I look online it seems like a lot of websites advise endoscopy for diagnosis.

Did anyone else only have blood work and not an endoscopy? I guess I am hoping that it is all a big mistake...


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

With both of those tests being positive there is really no reason to go through with a biopsy. The positive EMA and tTG is enough for an official diagnosis.

The biopsy can be false negative because damage can be "patchy".....if samples are taken from an unaffected area you can have a false negative. A negative biopsy does not rule out Celiac Disease.

Since you've got the positive bloodwork a biopsy is not necessary.

S-J-L Apprentice

I had both positive blood work and biopsies. I have heard the biopsies can be negative because its a patchy disease also. The main reason they do the biopsies is that not too many people want to go gluten free unless they absolutely have to. It changes your whole life style.

disneyfan Apprentice
My doctor diagnosed me with Celiac based on positive Endomysial AB and Transglutaminase IGA tests. She told me that the results were virtually 100% accurate and that I do not need further testing, but when I look online it seems like a lot of websites advise endoscopy for diagnosis.

Did anyone else only have blood work and not an endoscopy? I guess I am hoping that it is all a big mistake...

I'm so glad you said this because I feel much better now! My endo did the TTG test first since he said that was the screening test. That was positive so he ordered the EMA which came back positive also. I did make an appointment with a Gastro Dr and was disgusted. He did not believe that I had any gluten problems and said I had convinced myself that those foods were bad for me.

I decided that I felt horrible enough to go gluten free without his diagnosis and it was the best decision I made. My blood work now shows I am absorbing my calcium, Vit D, anemia is gone, and my thyroid meds have been lowered as well.

I felt much better within a week of going gluten free. I probably should have pursued an endoscope to be sure but so many reports say if they don't get the right spot in the biopsy, you will get a negative biopsy. I chose not to do this and follow the diet.

It's been a little over a year and you couldn't pay me to eat a piece of bread or cracker!

Leslie-FL Rookie
I'm so glad you said this because I feel much better now! My endo did the TTG test first since he said that was the screening test. That was positive so he ordered the EMA which came back positive also. I did make an appointment with a Gastro Dr and was disgusted. He did not believe that I had any gluten problems and said I had convinced myself that those foods were bad for me.

What a horrible doctor!! Especially with the positive bloodwork having brought you there. It's good that you went forward and tried eating gluten free for your own peace of mind. You're feeling better already and showing documented improvement in your health. Good for you, for doing what is right for you!

Can these blood tests be done with an accurate result after a person is gluten free for a year? I'd like to check into it with my doctor, just because an official diagnosis might be a good thing if, for instance, I were ever hospitalized and needed it noted in my records for the meals to be gluten free, but I don't want a diagnosis badly enough to start eating gluten again.

bakinghomesteader Contributor

I had positive blood work and with the positive diet response and the positive ttg from enterolab, my doctor gave me the diagnosis without endo. I said, with positive blood work, I really don't want to have to go through an endo. We agreed that the end results would be a gluten free diet anyway. So no endo.

hilwacat Rookie

That makes sense, but I wonder if positive blood tests can mean only gluten sensitivity, not Celiac disease. One is so much more serious than the other.

Does anyone know if these positive blood tests can mean just gluten sensitivity w/o Celiac disease?


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

If you have a positive TTg and EmA, you are making antibodies against your own tissue. That to me spells celiac.

If you want to know whether or not there is damage to your intestine, you should do the endoscopy. No one can stop you from going gluten free after that whether or not it's positive, but then you'd know. I'm not necessarily saying that everybody always should have biopsies done. Just a point to consider I think.

Leslie-FL, no, blood work after a year gluten free would not be reliable at all. Some people do still show antibodies after a year but the chance is not very high I think.

Pauliina

Rachel--24 Collaborator
That makes sense, but I wonder if positive blood tests can mean only gluten sensitivity, not Celiac disease.

No, the positive antibodies indicate an autoimmune condition....not a sensitivity.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.