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

Antibody Levels Are Still High


yogamommytrainer99

Recommended Posts

yogamommytrainer99 Apprentice

I was diagnosed with Celiac Disease in late June and had 8 weeks of fatigue and belly problems. Within the past month I have had more energy and my belly symptoms have decreased. I had my anitbodies tested again and they are still high. I am getting glutened some how. I don't eat out much - I am careful at home. I read all my food labels and I try to eat fresh foods to limit packaged ones. What else is there to do?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

IMHO it was too early for them to test you again. Most times it is advised to wait for 6 months to retest. It takes time for the antibodies to leave the system. If you are feeling better keep at it and try to go with as much fresh unprocessed foods as you can. If you still seem to be reacting to stuff a food log can help to pinpoint where gluten could be sneaking in. Also make sure to become knowledgeable about CC issues and it may help to make sure you have also eliminated gluten from all non food sources as well. Make sure you are also checking your supplements and all meds with the companies that make them. Some supplements will have wheat or barley grass or even oats so read ingredients even if they say gluten free on the label.

heatherjane Contributor
I was diagnosed with Celiac Disease in late June and had 8 weeks of fatigue and belly problems. Within the past month I have had more energy and my belly symptoms have decreased. I had my anitbodies tested again and they are still high. I am getting glutened some how. I don't eat out much - I am careful at home. I read all my food labels and I try to eat fresh foods to limit packaged ones. What else is there to do?

I was diagnosed this past January and just got my antibodies retested two weeks ago. I'm 75% improved, but I know it's been a slow process. Just give it time. It's too early to freak out. :)

As far other places where gluten can be, you may want to check any lip products, shampoo, medications, vitamins...those things can be easily overlooked. Have you replaced your toaster?

Gemini Experienced
I was diagnosed with Celiac Disease in late June and had 8 weeks of fatigue and belly problems. Within the past month I have had more energy and my belly symptoms have decreased. I had my anitbodies tested again and they are still high. I am getting glutened some how. I don't eat out much - I am careful at home. I read all my food labels and I try to eat fresh foods to limit packaged ones. What else is there to do?

It is FAR too early to be re-tested for antibodies and do not assume you are ingesting gluten. It can take up to 2 years for antibodies to come down to normal levels.

FYI....I do not screen topical products for gluten, except for those products which go on my lips. The gluten molecule is too large to pass through the skin so unless you get something in your mouth, you cannot be glutened by using lotions or shampoos. My antibody tests always come back in the really low end of normal so I know it has worked for me. If your symptoms and fatigue are abating, then you have probably done things correctly and just need time for everything to return to normal. If you were ingesting gluten, you'd still be sick.

I would wait at least another 6 months to re-test, unless you develop problems/symptoms again. Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,112
    • Most Online (within 30 mins)
      7,748

    Deedy
    Newest Member
    Deedy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
      Hello, I was diagnosed with Hashimoto's thyroiditis about 3 years ago. At that time I quit gluten and it really helped my symptoms. I hadn't known that I should've tested for celiac before doing so.  Up till recently, gluten would cause my symptoms to flare up, although I never noticed anything with cross contamination, so I wasn't strict about that. But recently, I noticed I could get away with more gluten, and so I decided to do a gluten challenge to see if I had celiac and if I had to be strict. Note that my thyroid antibodies had been decreasing steadily up to this point. My anti-TPO had reached 50 IU/ml from 250 IU/ml (reference range 0-5.6) when I had first been diagnosed. After just a week of the gluten challenge, I measured my thyroid antibodies and they were at 799 IU/ml! I felt fine, but a few days after I started to feel the symptoms. Extreme brain fog, insomnia, diarheaa, fatigue, sleepiness yet cannot sleep, stomachache after eating gluten, nausea, swollen throat (probably due to my thyroid), burping, and gas. I cannot function properly. I'm also worried that I'm killing my thyroid. Should I just quit the challenge? It's been almost two weeks, but the first week I wasn't tracking well, so that's why I didn't want to count it. I can't eat gluten anyway because of my thyroid, but I wanted the diagnosis to know if I should be strict about cross contamination or not.  
    • Zuma888
      You really saved me as I was on day 4 of 3 g per day for 6 weeks. Thank you very much!
    • trents
      Two weeks is the minimum according to the guideline. I would go for four weeks if you can endure it, just to make sure.
    • Zuma888
      Thank you so much! So I can do 10 g worth of gluten in the form of gluten powder per day for two weeks and that should be enough?
    • trents
      It applies to both blood tests and biopsies. Guidelines for the gluten challenge have been revised for the very issue your question raises. It was felt by medical professionals that the longer term but less intense consumption of gluten approach was not proving to be reliable for testing purposes and was resulting in too many false negatives. But do keep in mind that the gluten consumption doesn't have to be in the form of bread slices. It can come in any form: pasta, cake, wraps, etc. Another approach would be to buy gluten powder at a health food store and mix it in a shake. The idea is to get at least 10g of gluten daily, whatever form it comes in.
×
×
  • Create New...