Antibodies After One Year

[lehum]

Hello Everyone,

I hope you all are doing well and enjoying 2022 so far. 
I have Celiac and am writing with a question about the level of antibodies against gluten as a result of my latest bloodwork, since it can be difficult to get clear answers from a doctor and most of my online research has also left me scratching my head.

When I was diagnosed with Celiac, last February, 2021 (almost a year ago), my IgA antibodies were very high at 1,119.8. (Less than 20 is normal). My doctor also said, after the endoscopy, that my intestinal damage was very advanced.
After about 5.5 months of a gluten-free diet, the antibodies had reduced to 288.3, which my doctor was happy about. He said they should reduce by half the amount or more by 6 months.

I got them tested again last month, at about the 10.5 month mark, and they were at 103.6. 
I've read that most adults should have antibodies in the normal range after a year of the gluten-free diet, but that for some, it can take longer, up to two years. I have been trying very hard to be extremely careful with my diet and feel quite sure that I am not consuming gluten.

Though after a year the antibodies are still too high, could it be that my body is simply still undergoing the process of healing? Does anyone have any personal experience/more information about it? 

Thank you all so much in advance! 

Friendly greetings,
Lauren 

[Scott Adams]

Welcome to the forum. You definitely had extremely high results on your blood test. I think your doctor is right about being happy with your current results, and it may take you even longer to get them down close to zero, which should be your goal. Be sure you're not getting hidden gluten, for example if you eat out in restaurants it's pretty common, including in your medications, supplements, etc.

Given the damage your doctor saw in the biopsy it would probably also make sense to get a follow up biopsy at some point.

The average time to recovery is two years, but I think that could be less if you're 100% gluten-free.

[RMJ]

My TTG IgA antibodies came down to normal in a year.  My DGP IgA antibodies took six (yes, 6) years!

I think you’re doing well.

[cristiana]

My TTG numbers took ages to come down to under 10: it took nearly 8 years!  I think this is unusual.

I have no idea what they were at diagnosis because lab results cut off at 100 in the UK.  I can only speculate they were stratospheric. 

I consider myself to be very strict with my diet.  Whilst I am sure cross-contamination had a part to play, I found it very annoying that friends that in my view weren't as strict as me normalised much quicker.  But my consultant always took the view that as long as they were moving down, that was progress.  

I think you are doing well, too.

[icelandgirl]

Hi Lauren!

It sounds to me like you are doing great so far!  Your antibodies have come down a lot!  It took mine a year and a half to get to normal and they didn't start nearly as high as yours.  I do remember that at 1 year they had come down a lot and then 6 months later were in the normal range.  Keep doing what you are doing and I'm sure that your antibody levels will get to normal levels before you know it!