How Long For Antibody Level To Come Down?

[mom2J]

Hi,

 

My daughter was diagnosed with Celiac disease about 4 months ago.  At the time of diagnosis, her Tissue transglutenase antibody was 120.  Her small bowel biopsy came back very + for celiac disease.  Fast forward 4 months later and adherence to a strict gluten free diet, and her antibody level has only dropped to 100. So 20 "points" so to speak.  When the nurse called, I was under the impression that meant she was still in contact with gluten and that if she is adhering to a strict gluten free diet, we need to double check some more where this might be coming from.  I'm racking my brain unsure where this mystery gluten is getting into her system.  And I feel horrible that after 4 months of her completely changing everything about her diet, this only dropped 20 points. My question is, is it unusual to have only dropped this much in four months, or is it possible that it could just take some time?  I will be going over all ingredient lists again in all the food she consumes as well as soap and hair products etc... but we have been so very careful about this. And I do want to add that she has felt so much better since going gluten free.  She has gained 10 pounds already since diagnosis (in her case this was needed) which tells me something is going well.

 

Thanks in advance for any advice/help with this.

 

 

[kareng]

You should do a re-check on foods and procedures.  But, it can take a long long time to get the numbers completely down.  In fact, I heard Celiac researchers talking about a study they did.  Just happened that people's antibodies still went up for a few weeks after being gluten-free.  

 

 

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"tTG normalizes slowly when on a strict gluten-free diet. This process may take years if the starting level is very high." 

[StephanieL]

We're 4+ years and still looking for normal. This includes calling all food companies, testing with test strips, reevaluating everything, looking into thyroid issues, getting on thyroid meds and a trip out of state to a Dr that is very highly regarded by many.    

 

I am not saying this will be your road but it will take time with numbers that high.  My DS's first tTG was 128. It took close to a year to get a real drop in those numbers (into the 70's I believe). Don't drive yourself crazy after 4 months.  I would give it more time before you drive yourself nutso!!

 

You're doing great! I'm sure!!

[ryo]

it can take time.  at 6 months one of our doctors told us that we must still be feeding her gluten.  devastating to hear!  after talking with our GI doctor we felt much better.  she said it can take a full year to really see a change in the numbers.  at 1 year my daughters levels are almost back to "normal" and they were over 100 when diagnosed. 

 

can you talk with your doctor directly? nurses are great but do not always have all the information.

 

that fact that you are seeing weight gain is great!  i try to tell myself to always look at the whole picture.  if she is feeling better, growing, and you are checking foods you are going in the right direction.  give yourself sometime.