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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,029
    • Most Online (within 30 mins)
      7,748

    toyatang
    Newest Member
    toyatang
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...