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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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7 posts in this topic

I am so irritated right now. I had blood work done Friday morning. I am having lots of symptoms of celiac but also could be other things so they ran a bunch of blood work. I get a phone call this morning the dr got my blood test results and would like to see me. So I'm thinking they've found something, not necessarily celiac but something. Normally when its just anemia or something they just tell me over the phone. So I'm thinking, yay the blood test results are back, maybe I can get some answers. Nope, the dr can't fit me into his schedule until October 11! I am so upset! I told the receptionist that that was a really long wait and that I am very sick and she said (in a snide tone) well the results aren't urgent. They wouldn't consider celiac urgent so I am still thinking its a possibility but who knows. I am going to go insane waiting 9 more days to find out the rests of the blood tests. Then something even weirder - the dr wants me to repeat some of the blood work. I won't know until I get the requisition whether that includes the celiac testing or not. But why would a dr want to repeat bloodwork that was just done 4 days ago? I just feel so sick and I can't believe I have to wait 9 days just to see blood test results.

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Can you ask them to make a photocopy of the blood work results and let you pick them up in reception? Or better yet, could they email them to you? In most states you don't have to wait and get the news from the doctor.

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I am so sorry - that is just wrong. I'd call back and ask for a return phone call from the doctor or minimally his nurse - sometimes the nurse can fit you in for a earlier appointment - dismiss the receptionist if she gives you attitude - simply be clear you need to talk with the doctor or his nurse - if she tries to dismiss you, tell her you have new pain that can not wait nine days for a conversation with the doctor. Demand to be told your results over the phone or to be seen sooner. Minimally you should be told what bloodwork needs to be re-done and why.

Has he ordered the new tests? If so, you can find out at the lab exactly what was ordered - he may have ordered additional tests, not just re-dos.

Medical testing limbo is the worse and is not necessary in this case.

Let us know how it goes.

Hang in there!!!!

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Can you ask them to make a photocopy of the blood work results and let you pick them up in reception? Or better yet, could they email them to you? In most states you don't have to wait and get the news from the doctor.

Yep, you can do what kitty suggested. If you didn't have the blood work done at the doctor's office, like at a hospital or outpatient facility, you could go and sign a release and pick up a copy of your blood work in medical records. I do this all the time to take to other doctors and for my personal file.

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Okay, my husband went and got a copy of the blood work but the celiac test result isn't on there??? Does this mean it wasn't back yet or something? He just did the tTG test. I paid $65 dollars so they darn well better have done it. Okay so for the blood test results that came back here is what is circled as being off: (I'm in Canada so some of the numbers might be different than what the US numbers would be)

Hemoglobin: 99 (normal is 120-160)

Hematocrit: 0.32 (normal is 0.35-0.45)

MCV (Mean Corpuscular Volume): 69.0 (normal is 80.0-100.0)

MCH (Mean Corpuscular Hemoglobin): 21.4 (normal is 27.5-33.0)

RDW (RBC Distribution Width): 16.1 (normal is 11.5-14.5)

Neutrophils: 8.3 (normal is 2.0-7.5)

Lymphocytes: 3.8 (normal is 1.0-3.5)

Eosinophils: 0.7 (normal is 0.0-0.5)

Ferritin: <5 (normal is 10-291)

Everything else was normal. I don't know if any of the above results point to anything (except obviously anemia). The only new test they are ordering is HB Electrophoresis, something to do with the red blood cells. I also bought a thermometer and my temp has been consistently hovering around 99.5 all day and I feel the same as I have felt for 3 weeks so I am assuming that I have had a low-grade fever the whole time.

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Okay, my husband went and got a copy of the blood work but the celiac test result isn't on there??? Does this mean it wasn't back yet or something? He just did the tTG test. I paid $65 dollars so they darn well better have done it. Okay so for the blood test results that came back here is what is circled as being off: (I'm in Canada so some of the numbers might be different than what the US numbers would be)

Hemoglobin: 99 (normal is 120-160)

Hematocrit: 0.32 (normal is 0.35-0.45)

MCV (Mean Corpuscular Volume): 69.0 (normal is 80.0-100.0)

MCH (Mean Corpuscular Hemoglobin): 21.4 (normal is 27.5-33.0)

RDW (RBC Distribution Width): 16.1 (normal is 11.5-14.5)

Neutrophils: 8.3 (normal is 2.0-7.5)

Lymphocytes: 3.8 (normal is 1.0-3.5)

Eosinophils: 0.7 (normal is 0.0-0.5)

Ferritin: <5 (normal is 10-291)

Everything else was normal. I don't know if any of the above results point to anything (except obviously anemia). The only new test they are ordering is HB Electrophoresis, something to do with the red blood cells. I also bought a thermometer and my temp has been consistently hovering around 99.5 all day and I feel the same as I have felt for 3 weeks so I am assuming that I have had a low-grade fever the whole time.

anemia and perhaps infection. The RDW means RBCs are being released before they are quite mature, probably in reaction to your anemia, but are you bleeding anywhere? The MCV being lowish, I am thinking iron def anemia rather than B12.

If your WBCs weren't "off", I would have been willing to discount the Temp, after all 98.6 is only a mean. If you can tolerate Acetominophin, you could try a couple of doses and recheck your temp. Good luck.

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They may have needed to send the celiac test to a different lab, which is why it's taking longer.

Your blood results are very similar to what mine were pre-gluten free. I also had low MCV and MCH, high RDW and high white blood cell counts. I don't know if that's typical with celiacs, or if it's just a coincidence.

Even though I've been gluten free for about six months the neutrophil count is still really high, which can be an indication of celiac-related inflammation being repaired.

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