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 Celiac.com!
    eNewsletter
    Donate

Antibodies Higher After 3 Wks On gluten-free Diet!?!


yogamommytrainer99

Recommended Posts

yogamommytrainer99 Apprentice

I am truely frustrated... I began a gluten free diet over 3 weeks ago following an antibody blood test which was crazy high and biopsies of my intestines being positive for celiac disease.

I went back to the doc and he retested my levels with the idea being that my antibody levels should have dropped by at least 50%, well they didn't - they doubled!

So, I don't cheat and eat wheat, barley, oats, etc. I read labels, I don't eat processed food. I prepare my gluten-free meals separately from my family's. What gives? Is there something else that could possibly raises my antibody levels? I just don't think that I am getting gluten from my diet!

Anyone have any ideas?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Lisa Mentor

I don't know the time frame where antibodies would drop after gluten free, but I do know that the Celiac Research Centers recommend that a person consume 3-4 slices of bread (or equivalent) for a six to eight week period.

Perhaps, you doctor has not given your antibody level adequate time to drop.

I would begin a food diary and document everything from vitamins, meds, shampoos, lotions to shared toasters and pot and pans. Shared condiment jars could also transfer gluten. It takes time to master the diet completely.

Link to comment
Share on other sites
ravenwoodglass Mentor

Don't get discouraged it does take a while both to get the hang of the diet and for antibody levels to decrease. Do check everything that Momma Goose mentioned and also be aware that for many of us products produced in the same place a gluten items can be crosscontaminated. In addition you need to check to make sure any product with 'natural flavors' is gluten free. Barley often hides in natural flavors and doesn't need to be listed as an ingredient. Labeling regs for meds, OTC and script as well as vitamins are different than they are for foods. Only get vitamins that say gluten free and then please still read the label. Some supplements will have wheat and barley grass in them but still say they are gluten free. Any scripts need to be checked by your pharmacist and if the drug is a generic it should be checked at each refill as they can change binders at will.

Are you still cooking or baking gluten foods for your family? Baking is especially dangerous as the flour gets into the air and when you breathe it in it will cause a reaction.

It is more common for doctors to wait for 3 to 6 months to recheck antibody levels. If you had a wait before the endo after you had the positive bloods your antibodies may have increased during that time also. I hope you are feeling better soon.

Link to comment
Share on other sites
Gemini Experienced
I am truely frustrated... I began a gluten free diet over 3 weeks ago following an antibody blood test which was crazy high and biopsies of my intestines being positive for celiac disease.

I went back to the doc and he retested my levels with the idea being that my antibody levels should have dropped by at least 50%, well they didn't - they doubled!

So, I don't cheat and eat wheat, barley, oats, etc. I read labels, I don't eat processed food. I prepare my gluten-free meals separately from my family's. What gives? Is there something else that could possibly raises my antibody levels? I just don't think that I am getting gluten from my diet!

Anyone have any ideas?

If the test in question was the Ttg, that can take a lot longer than 3 weeks to drop. The other problem that seems to be missed by many people is Ttg levels are indicative of other autoimmune problems also, not just Celiac Disease. So if your Ttg levels are rising, it could be that you have more than 1 autoimmune problem.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,212
    • Most Online (within 30 mins)
      7,748

    DaniellePaxton
    Newest Member
    DaniellePaxton
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 
    • cristiana
      HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana
    • Scott Adams
      I agree, and hopefully your doctor will contact you soon about the next step, which will likely be an endoscopy to confirm your diagnosis. Do you have celiac disease symptoms? 
    • Kirbyqueen
      Still dealing with this rash on my legs. I've eliminated ringworm (through use of topical ointments). And I also know it's not shingles, as I've never had chickenpox before and I'm still fairly young. Through a lot of online research, I'm leaning more towards dermatitis herpetiformis, eczema, or psoriasis. I've actually got a doctor's appointment in May (finally got some insurance) and I'm going to bring it up then. I'm feeling really hopeful and excited to maybe be getting some relief soon.   Big thanks to everyone for the suggestions and positive thoughts!
    • trents
      You have three celiac disease specific antibody tests that are positive: Endomysial  Antibody IGA (aka, EMA), tTG-IGA, and tTG_IGG. Furthermore, your Immunoglobulin A at 55 is low, meaning you are IGA deficient. This one is not an antibody test for celaic disease per se but a measure of "total IGA" levels and if low (yours is low) it can suppress the individual antibody scores and even cause false negatives. So, yes, it definitely looks like you have celiac disease.   Do not yet begin a gluten free diet as your physician may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining for confirmation of the antibody testing. This may help:   
×
×
  • Create New...