Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

False Negative?
0

7 posts in this topic

I have been extremely sick for two years and have had almost every potential symptom for celiac disease. After my dad was diagnosed and then when my blood tests strongly pointed toward celiac disease, we got very excited about finally being close to an official diagnosis. However, my EGD results came back negative.

I am so discouraged! I just want to know why I am sick. I was careful not to eliminate gluten from my diet before the EGD to avoid a false negative.

Are there other factors that can lead to a false negative?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Yes. Damage can be patchy, so getting a sample for biopsy can be tricky. That's why they say around 8 samples is best. Also, the scope doesn't reach through the whole small intestine. You could have damage outside of the reach of the scope?

In addition, maybe your Ceiac was caught before you have noticeable damage? I hope so!

If your blood test was positive..go completely gluten free. You will avoid all of the nasty malabsorption issues and future diseases that come from an inflamed system.

0

Share this post


Link to post
Share on other sites

Thanks. I heard the GI docs talking about getting a biopsy in two places before they knocked me out, so that may be all they did. The silly endoscopy feels like such a waste of money now! (No insurance.)

I think your words may be all I needed to keep me on a gluten-free diet. Thank you! I have been feeling better since I cut gluten out (right after my EGD). I just really wanted that official diagnosis.

0

Share this post


Link to post
Share on other sites

One of the leading experts on celiac, Dr. Alessio Fasano, has spoken on this very topic many times and has written several articles in which he has challenged whether endoscopies should be considered the gold standard for diagnosing celiac. The reasons for this is that the scope may not reach the damaged area, there may not be enough damaged area to get a good sample, the surgeon is not skilled enough or experienced enough to know where and how many samples to take, and the pathologist may not be competent enough to determine whether a person has celiac or not (a recent study showed that pathologists at medical hospitals were better at detecting celiac; whereas, doctors at regular hospitals did not do so well). Dr. Fasano has pointed out that if you have positive bloodwork and/or a positive gene test, your symptoms resolve on a gluten-free diet, and the symptoms return when gluten is reintroduced, a diagnosis of celiac should be made. There are many doctors who will diagnose celiac without a positive biopsy. Others will diagnose celiac even without positive bloodwork.

When I arrived in the office of the gastro of my HMO after suffering from classic celiac and Dermatitis Herpetiformis symptoms all of my life, he apologized profusely for the missed diagnosis on behalf of all of the doctors I had seen over the years. He scheduled an endoscopy, but because my IV blew out and I bled like a fountain for quite some time, he refused to do the procedure, stating, "I'm 100% positive you have celiac; this procedure is unnecessary." So...I agree that you should go gluten free for the rest of your life. When you occasionally get glutened and become extremely ill as a result, you will know with certainty that you have made the right decision.

By the way, you might search for the articles that state that taking at least eight samples is required for a celiac diagnosis....and take them to your surgeons to request your money back on the procedure (at least, THEIR fees).

1

Share this post


Link to post
Share on other sites

You had positive blood tests, your father is celiac. You are celiac. No doubt.

I hope you are feeling better soon and you may find your GP gives you the official diagnosis once your symptoms have resolved and your antibody levels have dropped on retesting. Ask for them to be retested at 6 months to a year if your doctor doesn't suggest it himself. Be sure to also have them do full vitamin and mineral panels on you as many of us need to supplement for low iron, ferritin, B and D and more until we have healed.

0

Share this post


Link to post
Share on other sites




Rosetapper23, thank you for the information about Dr. Fasano. Very helpful and beneficial information.

ravenwoodglass, thanks for the tips. They run tests on my blood every time I go in so I actually am taking B and D supplements. :)

0

Share this post


Link to post
Share on other sites

One of the leading experts on celiac, Dr. Alessio Fasano, has spoken on this very topic many times and has written several articles in which he has challenged whether endoscopies should be considered the gold standard for diagnosing celiac. The reasons for this is that the scope may not reach the damaged area, there may not be enough damaged area to get a good sample, the surgeon is not skilled enough or experienced enough to know where and how many samples to take, and the pathologist may not be competent enough to determine whether a person has celiac or not (a recent study showed that pathologists at medical hospitals were better at detecting celiac; whereas, doctors at regular hospitals did not do so well). Dr. Fasano has pointed out that if you have positive bloodwork and/or a positive gene test, your symptoms resolve on a gluten-free diet, and the symptoms return when gluten is reintroduced, a diagnosis of celiac should be made. There are many doctors who will diagnose celiac without a positive biopsy. Others will diagnose celiac even without positive bloodwork.

When I arrived in the office of the gastro of my HMO after suffering from classic celiac and Dermatitis Herpetiformis symptoms all of my life, he apologized profusely for the missed diagnosis on behalf of all of the doctors I had seen over the years. He scheduled an endoscopy, but because my IV blew out and I bled like a fountain for quite some time, he refused to do the procedure, stating, "I'm 100% positive you have celiac; this procedure is unnecessary." So...I agree that you should go gluten free for the rest of your life. When you occasionally get glutened and become extremely ill as a result, you will know with certainty that you have made the right decision.

By the way, you might search for the articles that state that taking at least eight samples is required for a celiac diagnosis....and take them to your surgeons to request your money back on the procedure (at least, THEIR fees).

Rose, great minds think alike! we shouldn't pay for that which we didn't get!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined