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

Elevated Antibodies For Life?


tiredofdoctors

Recommended Posts

tiredofdoctors Enthusiast

I went to my neuro, and he said that my antigliadin antibodies were slightly elevated (only one over normal). This is also very frustrating, though, because I haven't cheated ONCE since going gluten-free well over a year and 1/2 ago. I realize that one over isn't NEARLY as much as it was, but it scares me that one over will still do more neurological damage -- however small.

The neuro doc said that his impression is that once you have these antibodies, regardless of how strictly you adhere to diet, you will still have some elevation -- for life.

Has anyone heard of this? I would think that, if you adhered to the diet without compromise, you should be able to get the antibody level down to within normal limits. Any help you can give would be GREATLY appreciated.

xxxooo

Lynne


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



Celiac.com Sponsor (A8-M):



mouse Enthusiast

YOUR BACK!! Glad to see that you have a monitor again. Don't know the answer. Still waiting for my test results. Will call next week and see what the numbers were. My neuro problems have seemed to have gone bye bye lately and I hope they stay away. I am wondering if that one glutened pill that I took 2 1/2 months ago could have lingered that long. I certainly don't care to test it.

jmengert Enthusiast

Hi, Lynne--Very funny you should ask this, as I was just told this on Wednesday. My antibodies were also positive (just one over the limit, too), but the rest of my results were fine. My doctor said that since my results came down so drastically, it was fine. He also said that those results are probably as good as I will ever get. I'm having an endoscopy (my first one) in two weeks, so I'll know then if I'm actually getting damaged or not.

So, I guess it could be true. I found it a bit odd, too.

kbtoyssni Contributor

At first I thought there's no way they can still be high if you're gluten-free. But then I thought about things like mono. I had mono seven years ago and blood tests would still show those anti-bodies. The difference is that mono is caused by a virus and therefore you will always have that virus (as opposed to bacterial infections which go away when the bacteria die), but you feel better because your body builds up antibodies. Celiac isn't a virus, though, so I don't think this same principle applies. Maybe it mimics a virus in some ways, though? I have no idea.

bremac Apprentice

I think the point is that we (most of us I think) can never be 100% gluten free. It might be 99.999% but there is still eensy tiny little bits of gluten that we ingest accidentally. My GI is happy as long as my ABs are hovering around normal. Before I was diagnosed they were almost 100X higher, so if they're almost normal it means I'm doing something right. I know it can be frustrating though because we WANT to have them be zero. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,638
    • Most Online (within 30 mins)
      7,748

    Clilly
    Newest Member
    Clilly
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @DebD5 it sounds like you are in the super sensitive celiac disease zone--and if so your reactions are real, and not psychological, as your doctor implied.  It's also possible you have other dietary triggers so be sure to look at that article in my last post in this thread.
    • DebD5
      I would like to say you saved me. I’ve been so sick the last few years, celiac since 1997. And reading your post about the other glutens/grains that can be sensitive to celiacs, is the only thing that has ever helped me. Since going off a carbohydrates/grains, even gluten-free ones, My chronic pain is  85% better. I’m actually losing weight which, that’s a long story but was impossible. I definitely am like you. Thank you so very much for posting. For some of celiacs I do believe this is the magic key. 
    • DebD5
      I 100% believe if you were sticking gluten items, especially flour, and breathed it in you could be glutened. I’m a celiac for almost 30 years. For the first ten years as a celiac I’d help my polish family make pierogis at Christmas time. I would only cook them at the stove and I didn’t touch anything with my hands using spoons. But the flour is in the air. And I’d get violently ill for 1-2 weeks after the last few years I did it. Wearing a back is a great suggestion and washing your clothes and showering when you get home. Good luck. And I’m so sorry your parents are emotionally supporting you. 
    • DebD5
      Have you had your thyroid checked? I was diagnosed at 24 with celiac. Lost my period permanently at 32. Found out six months after I lost my period that I had 1 ovary with 1 follicle. I had a child already but wanted more. Ended up having two more children with one ovary and one follicle. But my doctors theories are if I would have gotten my thyroid checked sooner and fixed through medication, maybe things would look different. Who knows. I only share my experience so you question your doctors and advocate. Always see an endocrinologist for thyroid care fyi. Actually always see the specific Dr for your specific ailments. I’d also consider seeing a gynecologist that specializes in female hormones/menopausal symptoms. Early ovarian failure happens in celiacs so I read  on the celiac disease center in Chicago website. 
    • DebD5
      This. Scott said it beautifully. Document and start a trial gluten-free diet. I can also recommend an inflammation dietitian I saw last summer if interested. She’s the only one who helped me on a path to healing through an elimination diet. Which is tricky with your little one. But I completely trust her, she’s very expensive though. I figured out I’m sensitive to so many things and follow a gluten-free diet religiously. Just had an upper and lower endoscopy/colonoscopy and zero signs of celiac disease so they said. I’m a celiac since 1997. But my 33 yr old daughter is very gluten intolerant since 20 yrs old. 
×
×
  • Create New...