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Persistent Anemia, Negative Blood Tests

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Hi all,

I had my anemia and celiac blood tests interpreted today. My H&H is slightly improved over last time (approx. 6-7 weeks ago) but I get the impression that my doctor expected more improvement than what she actually saw. I am still anemic (microcytic) and the serum levels (Fe, ferritin) were not optimal either (these were not tested prior). My celiac tests (of course) came back negative, but I was pleasantly surprised that my doctor said this is an "inconclusive" result and mentioned the biopsy as the gold standard for diagnosis. She is interested in pursuing this but wants to wait and see if I respond better with iron supplementation. This seems backwards in my mind...if she wants to recheck my blood for anemia in say, 3 months, that means I can't go gluten free, right?

Does it seem like I'm on the right track? I was the one who initiated the Celiac testing in the first place. The anemia was detected back in early September, but I feel SO much better with just slight improvement, that I'm wondering if this has been a MUCH longer problem than I knew! Has anybody else gotten their diagnosis this way? Has anyone's physicians insisted on supplementation trials before biopsy?

Thanks!!

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Questions come to mind: Were the celiac results totally negative, or 'inconclusive' - meaning neither positive or negative? That is, what made her think they were inconclusive? Was it your anemia? What supplements have you been taking that your H&H improved? Most doctors do not even consider biopsy if the blood panel is negative - what celiac tests did she do and what were the results and ranges?

To answer your question -- yes, if you want the biopsy you must continue eating gluten until it is done. And no, I have never heard of supplementation trials before biopsy if she is considering biopsy in the first place, because even if you responded to supplementation that would not answer the question of what is causing the anemia.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Hi all,

I had my anemia and celiac blood tests interpreted today. My H&H is slightly improved over last time (approx. 6-7 weeks ago) but I get the impression that my doctor expected more improvement than what she actually saw. I am still anemic (microcytic) and the serum levels (Fe, ferritin) were not optimal either (these were not tested prior). My celiac tests (of course) came back negative, but I was pleasantly surprised that my doctor said this is an "inconclusive" result and mentioned the biopsy as the gold standard for diagnosis. She is interested in pursuing this but wants to wait and see if I respond better with iron supplementation. This seems backwards in my mind...if she wants to recheck my blood for anemia in say, 3 months, that means I can't go gluten free, right?

Does it seem like I'm on the right track? I was the one who initiated the Celiac testing in the first place. The anemia was detected back in early September, but I feel SO much better with just slight improvement, that I'm wondering if this has been a MUCH longer problem than I knew! Has anybody else gotten their diagnosis this way? Has anyone's physicians insisted on supplementation trials before biopsy?

Thanks!!

You have to be on gluten for your scope but not for a repeat blood test for anemia. It is not going to hurt to supplement before any more testing is done. I'm assuming she is trying to figure out whether supplementing will improve your health but what is important is finding the source of why you are deficient and sometimes docs want to thru pills and meds without finding the source behind the problem.


Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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The nurse told me it was negative, but as that blood test has at least a 20% false negative rate, she does not discount a negative result. As the anemia is not resolving apparently to her liking, she is now thinking I'm on to something (I was the one who requested the test). She is also taking into account the other symptoms I've complained about. She wants me to continue supplementation with Slow Fe for a while longer. I was gluten-free for about 3 weeks prior to my blood test but ate gluten a week prior. I'm wondering if most of the progress in my bloodwork is because of that gluten-free time. She said I could go gluten-free again, but now in my mind, it seems that if the anemia resolves on a gluten-free diet, how would we know the true reason? (i.e., because of gluten-free, therefore increased iron absorption? Or, no celiac disease present and supplementation is working?) I don't want to hassle the staff, so I may give it a couple days and call back. Maybe request an appointment to discuss everything with her? Am I barking up the right tree?

Questions come to mind: Were the celiac results totally negative, or 'inconclusive' - meaning neither positive or negative? That is, what made her think they were inconclusive? Was it your anemia? What supplements have you been taking that your H&H improved? Most doctors do not even consider biopsy if the blood panel is negative - what celiac tests did she do and what were the results and ranges?

To answer your question -- yes, if you want the biopsy you must continue eating gluten until it is done. And no, I have never heard of supplementation trials before biopsy if she is considering biopsy in the first place, because even if you responded to supplementation that would not answer the question of what is causing the anemia.

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If you had been gluten free for 3 weeks then back on for only one week, that could have definitely skewed your test results. Most medical professionals are unaware that you need to be eating gluten consistently for the tests to be valid. Generally speaking, one week gluten free would not make much difference but after 3 weeks off your antibodies could have done a disappearing act :( And if your intestines were starting to heal you would absorb the iron more effectively since celiac is a malabsorption problem. Once you have been gluten free it is normally recommended that you eat gluten solidly for 2-3 months before testing for celiac.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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