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How Long Did It Take For Your Blood Levels To Return To "normal"

pupok

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pupok Rookie
pupok
Posted

I was diagnosed with Celiac by blood test and biopsy a little over 7 months ago. I immediately went gluten-free and was being very careful about it. At the time of diagnosis my levels for everything on the celiac panel were very high, some off the charts.

I just had a follow-up blood test, and the doctor said my levels have improved from where they were but I'm still in the positive range, so I must be getting gluten somehow.

Someone on this board mentioned that it may take longer than 7 months for my levels to return to normal even if I'm not getting any gluten. So, how long did it take for you to get a normal blood test?

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SGWhiskers Collaborator
SGWhiskers
Posted
I was diagnosed with Celiac by blood test and biopsy a little over 7 months ago. I immediately went gluten-free and was being very careful about it. At the time of diagnosis my levels for everything on the celiac panel were very high, some off the charts.

I just had a follow-up blood test, and the doctor said my levels have improved from where they were but I'm still in the positive range, so I must be getting gluten somehow.

Someone on this board mentioned that it may take longer than 7 months for my levels to return to normal even if I'm not getting any gluten. So, how long did it take for you to get a normal blood test?

I got retested at 3 and 9 months. At 3 months, most of my levels were normal or significantly decreased. At 9 months all but one were normal with the one that was not normal about 60% of what it was at diagnosis. I think I'm pretty sensitive and was/am getting cc from somewhere every few weeks or so. I've kept print outs of all my labs of any kind through the years. It is nice if I want to research something on my own to have my results. Also nice with this celiac disease to be able to see the proof of changes and pat myself on the back.

elle's mom Contributor
elle's mom
Posted

I would also like to hear many answers to this same question.

My now 4 yo dd was diagnosed at age 2 1/2 and her IgAtTG was over 1000 (yes, that's 3 zeros!) initially. At 3 months, they were down to the 300 range. I was scared to get them checked again due to them still being so high. I thought we must be doing something wrong. After 17 months on the gluten-free diet, they were way down to 44, but still not within normal range. Now, I do not know if this is due to continual light-grade unintentional cc (she NEVER sneaks, she is very good about it) or maybe it just takes this long when the number is so high to begin with. It is making me (and her) totally paranoid. I will NOT let her eat out at all any more, or anything not prepared by myself or my husband. We also thought there was a slight chance maybe the babysitter was accidentally "crumbing" her or something. Our home has recently become 100% gluten-free (hopefully) so we're praying to eliminate any possibility of cc. I'm contemplating whether or not to let her go to pre-school come fall.

My other question is if your levels are higher than they should be how much time should you let go by before they are likely to come down if you aren't still getting glutened?

Puddy Explorer
Puddy
Posted

I was retested at 1 month, 3 months and 9 months. My numbers had dropped at the 1 month and 3 month tests and were in the normal range at 9 months. I was tested again 6 months after that and they are still in the normal range. I am not supersensitive and get no symptoms when glutened. I have to rely on my bloodwork to know if I'm following the diet correctly. So I, also, ask for copies of the tests each time to see if any of the numbers have risen at all. Even if they are considered in the 'normal' range I just want to make sure they aren't starting to slide in the wrong direction.

oceangirl Collaborator
oceangirl
Posted

2 YEARS! for my tTG to get into normal range. That is with never eating out and making ALL my meals from whole foods. From scratch. AND with a home that went "gluten free" with two teenagers, a spousal equivalent, 3 dogs, 5 cats and a house rabbit. (God, I must be talking about someone else from a bad novel...)

That said, I was still discovering sneaky places of hidden gluten and am ridiculously super sensitive!

It takes TIME!

good luck,

lisa

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