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

Looking For Affirmation...


Vanquish

Recommended Posts

Vanquish Rookie

So my doc did a blood test on me and my results came back positive for anti-endomyseal and anti giladin, does this mean i have celiacs then? I am getting an endoscopy on the 2nd of june but i was still in limbo about these results and how right they can be. Anyone shed some light on my situation? What happens next? Im on the gluten free diet btw and it cleared up what my derma said was DH pretty rapidly.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Looking at your blood work results, and that your DH cleared up is plenty of proof that you have celiac disease. Unfortunately, being on the gluten-free diet already may give you a false negative biopsy result.

Still, you need to be gluten-free anyway, and I hope you won't go back to eating gluten if your biopsy is negative.

Vanquish Rookie

Hmm, i've been eating a wheat wafer every day just to keep some gluten in my system for this biopsy and i intend to have my very last "cheat" day the day before i go in, and i will continue the gluten free diet even if it does come back negative because its always been important to me to have a healthy, fit body and mind. I was just curious if those results are the smoking gun in terms of a diagnosis or if they can be wrong in people without celiac disease, being the only one in my family for many generations about to get diagnosed i just want to have closure through one of the tests, so that i can move on with the diet and my life.

lizard00 Enthusiast

Celiac blood tests are specific. They are notoriously inaccurate because they don't catch all the people that DO have Celiac. So, no, if those numbers were elevated and your blood test actually caught it, consider yourself among the few. The tests only rule Celiac in, not out.

Ursa Major Collaborator

I am afraid one wheat wafer a day may or may not be enough. Normally they say you need to eat four slices of bread a day to ensure a positive biopsy.

On the other hand, if the damage was severe enough, in some people it is still not gone after six months to a year and would still result in a positive biopsy (assuming they biopsy a damaged spot).

Vanquish Rookie

Hmm maybe ill have to endure more then a wheat wafer then since i had DH i really didn't have any GI symptoms thats why it took me 6 months to see a dermatologist cause i figured the rash would go away on its own if i didn't itch it. As of right now i have some mild stetorrhea (mild being once a day at most) and alittle gas with some abdominal pain on my lower right side by my bellybutton. Apparently all symptomatic of celiacs, but as you say there is no false positive on the blood tests i guess i have it, im not sure why im getting the biopsy, maybe just to see how bad the damage is.

aikiducky Apprentice

If you have DH you could also try to have the skin near the rash biopsied, a positive for DH means celiac full stop, no other testing necessary. But the anti-endomysial is very specific for celiac, I really don't know what else it could be. Time to start learning about ingredients I think. :)

Pauliina


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Hmm maybe ill have to endure more then a wheat wafer then since i had DH i really didn't have any GI symptoms thats why it took me 6 months to see a dermatologist cause i figured the rash would go away on its own if i didn't itch it. As of right now i have some mild stetorrhea (mild being once a day at most) and alittle gas with some abdominal pain on my lower right side by my bellybutton. Apparently all symptomatic of celiacs, but as you say there is no false positive on the blood tests i guess i have it, im not sure why im getting the biopsy, maybe just to see how bad the damage is.

You would be better off getting a knowledgeable dermatologist to do a biopsy. There is a good chance that the endoscopic biopsy will come back normal. This will not mean you are in the clear celiac wise. With a positive blood test you have had your diagnosis. If you have DH you are celiac no matter what the endo says.

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. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748

    bigwave
    Newest Member
    bigwave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.