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How Soon After Becoming gluten-free Should I Get Blood Re-tested?

jkmunchkin

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jkmunchkin Rising Star
jkmunchkin
Posted

I have been gluten-free for close to 6 months now. I know once you are established on a gluten-free diet you usually only need to visit your GI once a year but I vaguely remember hearing something about getting your blood test done at 6 months when you initially start on a gluten-free diet to see how your numbers are. Does anyone know? If this is the case I'd like to think about making an appointment in the next couple of weeks.

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aljf Apprentice
aljf
Posted

I heard that--

I saw Dr. Susie Lee at the Columbia U Celiac center, and she suggested doing follow-up blood work after 6 months and then a re-biopsy after a year.

(She also had me get a bone density scan.)

She's really good-- I recommend her!

par18 Apprentice
par18
Posted

I had a blood test after about 6 months but not for levels of anti-bodies. Because I responded so well to diet and feel so good I was only checking things like blood sugar. I had a bone density test done about a month after Dx. I would probably get annual bone scan before blood tests if I still feel good with none of the previous celiac disease symptoms.

julie5914 Contributor
julie5914
Posted

I was still having a lot of trouble, so I was retested at 3 months and will be tested again (I hope) next week at 6 months. I really hope the numbers are down this time since I feel better after nixing dairy. Then I will go to doing a yearly check-in on it. I never had endoscopy - I wouldn't do that at 6 months after because of cost and trouble - the blood test should be enough to show progress. If my blood numbers are still super high I may do endoscopy, but if yours are down from last time and you're feeling better, I'd skip it and stick with the blood numbers.

skoki-mom Explorer
skoki-mom
Posted

I think it depends what "numbers" you are testing for. My GI told me that it was pointless to do antibody testing as the antibody titre is not a good predictor of disease. For instance, if my antibody level was half of what it was before, it does not mean I am 50% better than I was before. However, if you are testing for anemia and nutrient levels and stuff, I'm really not sure because I'm not getting tested for those either any time soon as they were all normal at the time of Dx. There is no reason they would decline with me on the diet. I will probably have another scope sometime in the next year, though, to find out what is going on in there.

jerseyangel Proficient
jerseyangel
Posted

I had the CBC and metabolic panel done at 6 months because I was anemic and my white cell count was low and a few other things were out of range pre DX. I will be seeing my GI the first week of Jan. -- don't know if he will do any more testing.

julie5914 Contributor
julie5914
Posted

My doc will be doing antibody testing because she says there will be no antibodies produced if there is no gluten to react to. And the tTG will show if damage is still being done. That's why we have to be on gluten for several weeks before a diagnosis blood test, right?

It's true that it won't show if you are healing, but it will show that you're not having reactions anymore and that the diet is working.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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