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Are Periodic Blood Tests Warranted?
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I was diagnosed in June, 2012 as Celiac through a blood test and follow-up biopsy. These were done in Lexington, KY by a young female GI to whom I will be eternally grateful. I have suffered for years and seen multiple GI's who never tested for Celiac. Now I am in Arizona and recently saw a GI doc at Mayo Clinic. This doc told me there was no need to do blood work as I was already diagnosed, and the antigen numbers from a blood test would give no valuable information. When diagnosed my blood count was over 100 (normal is less than 4); six weeks after being gluten-free it was 75, a positive sign, I thought. Now that it has been 5 months, I had hoped to see that my numbers were way down, a further sign that I was healing. Do any of you have doctors who track your blood count?

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This is a case where numbers don't mean anything, symptom relief does. Your numbers should be going down as long as you're on a strict gluten free diet. If you're feeling better then that's all that really matters.

The numbers you should be worried about are for vitamins and minerals. Make sure your numbers for b12, calcium, folate, iron and D are all in good standing.

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I always would like a way to mark progress. I just got my first report on vitamin absorption. I sure would like to repeat that down the road. Feeling better is good, but I like to measure progress somehow!

Diana

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Not sure why they would say that. This is from Univ of Chicago:

http://www.cureceliacdisease.org/archives/faq/how-often-should-follow-up-testing-occur

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.

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This is a case where numbers don't mean anything, symptom relief does. Your numbers should be going down as long as you're on a strict gluten free diet. If you're feeling better then that's all that really matters.

The numbers you should be worried about are for vitamins and minerals. Make sure your numbers for b12, calcium, folate, iron and D are all in good standing.

Thanks for your insight. I am overall feeling better, but would like to be able to track my progress through definable data.

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I always would like a way to mark progress. I just got my first report on vitamin absorption. I sure would like to repeat that down the road. Feeling better is good, but I like to measure progress somehow!

Diana

Thanks, Diana. I like to measure progress as well!

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Not sure why they would say that. This is from Univ of Chicago:

http://www.curecelia...p-testing-occur

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.

Thank you. This is valuable information and supports my "need to know".

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I have been gluten-free for around 3 months now and my tests came back negative (biopsies and many different blood tests). However, because of my symptom relief my gastro has asked that I return annually so he can verify my vitamin and other levels are still at appropriate levels. Concerns for celiacs are of course nutrient levels and blood count, but also things like thyroid, proteins and others that can quickly get out of whack with any autoimmune condition. It's important that you have the initial baseline testing so you know where you started, but only the follow-up work can confirm if you are supplementing and eating correctly, if your body is managing itself properly, etc.

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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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