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

Antibody Levels

The Glutenator

Recommended Posts

The Glutenator Contributor
The Glutenator
Posted

I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

I'm questioning the short length of time you've been gluten free to be already testing for antibodies and expecting them to drop if you had significant damage at diagnosis. That being said, I really don't know what is recommended although my gastro suggested being retested in 6 months to a year.

I'm interested to see what others have to say about this, too...I've only been gluten free since April 9 and have not yet been retested.

Frances03 Enthusiast
Frances03
Posted

I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Gfresh404 Enthusiast
Gfresh404
Posted

I would not be worried - I believe it takes a lot longer than 6 weeks for your antibodies to go down.

Wait at least six months - then if they're still high, that's when you can freak out.

The Glutenator Contributor
The Glutenator
Posted
  • Author

I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Sorry for the confusion, I have only had two tests. The first one for diagnosis, and now a second. The second test was after 6 weeks going gluten-free, but then I had two wait 2 and a half months for a follow up appointment (my scheduling issues, not the doctor's...but now that I feel so great no need to rush back to the appointments, haha).

Thanks for your feedback. He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

sb2178 Enthusiast
sb2178
Posted

A second biopsy after 4 months? that didn't leave you much time to heal. I'd be inclined to just get blood work done at 6 months and then, if there is no change, to consider a second biopsy at one year. (But I tend to wake up during such things and remember them as rather uncomfortable.) Especially since you feel good! If you still felt awful, that would be another matter.

ravenwoodglass Mentor
ravenwoodglass
Posted

He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

I would get antibodies rechecked at 6 months and then if they are still elevated it might be appropriate to rebiopsy in case you are someone who has 'silent' celiac to make sure that damage is being repaired. IMHO rechecking at this point is too soon.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

I had my antibody levels rechecked at 6 months and then again a little over a year later. I did have a repeat EGD and biopsy this April (1 1/2 years since last one) but I had the test for other reasons and since he was there he rebiopsied the small bowel to check progress. I my opinion I wouldn't rescope this soon. Wait for your six month blood work and then go from there.

heatherjane Contributor
heatherjane
Posted

My antibody levels were tested finally at near normal levels after 15 months from initial diagnosis. Definitely give it more time...your doc is too hasty.

The Glutenator Contributor
The Glutenator
Posted
  • Author

Good to hear. I am actually going away for the next couple months and won't have the endo until I get back, so the second biopsy will be over 6 months after being gluten-free. It's already booked and I wasn't very affected by it last time, so mind as well keep the appointment. It is really great to hear that I don't need to get too worried yet.

Kim27 Contributor
Kim27
Posted

I agree with everybody else, too soon to worry yet! What blood test are you talking about? tTG? My tTG level was 168 at first... 5 gluten free weeks later my doctor retested it only because I had to get some other bloodwork done anyway and it had dropped to 65. She did however make a point to say it's not normal to retest that quickly and that she wants to test again around 6 months gluten-free to see if it has dropped closer to more normal ranges since 65 is still too high but my body definitely didn't have enough time yet! It seems REALLY soon to have another EGD...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,439
    • Most Online (within 30 mins)
      7,748
    Lillian Steele
    Newest Member
    Lillian Steele
    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

    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By cristiana · Posted

      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.