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Awaiting Diagnosis
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3 posts in this topic

Good Afternoon,

I am awaiting the results of the blood tests my doctor ran yesterday.

I am 48 years old, and have always, always felt just awful all the time. Tired, achy, tummy issues. The recent event that brought me back to the doctor is a horrible need to scratch my entire body, between my toes, EVERYWHERE. Intense chest pain (the esopheogus), nausea, vertigo, constant numbness in my fingers and vomiting.

My PCM was not in on the day I went in, sub doctor ran blood work (told me I was his mystery patient of the month, gotta love that one).

First result back was an elevated white count >17K. He treated me with prednisone, thought that would help the itching.

Finally got to see my doctor yesterday. He looked at all the results and told me my B-12 was very low (132). "You have the B-12 of a hard-core vegan" were his exact words. After looking at the history and more of the blood work, he is fairly certain it is Celiac.

Anyhow, he sent me for the antibody blood test last night and I am awaiting the results today. He is also giving me a B-12 shot to try to get the level up.

Just checking in to see if my story sounds familiar to anyone here. I will post the results to the antibody blood work as soon as I have them.

I honestly hope that it is Celiac and I have something to work with and not live my life not know why I never, ever feel well.

So glad I found your group!

Pam

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Welcome to the board, Pam, and congratulations on finding someone willing to check for celiac - not always an easy task. It may take a day or two (or three) for the results to come in depending on what he ordered and your location. When you do get them, we would love to take a look. Be sure to ask for a print-out for yourself (you should do this with all your lab work) and keep a file you can refer to. There's no reason why your doctor should have the only medical file on you. If you care to share your results, be sure to give the test name, your score, and the lab ranges. There are people on this board who are pretty expert in interpreting lab tests :)

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Hi Pam,

Sorry to hear that you have been so unwell, your symptoms and clinical presentation definitely do match celiac as a possibility, it is important to tackle each issue full hand in order to get an accurate diagnosis or exclusion, celiac needs a close look to not get misdiagnosed. Please give us all results including the test name, your number, and negative range. Hopefully your doctor knows which tests to do but in the event he does not, these are the tests that need to be completed in full (not some, all) to get an accurate picture:

Total serum IgA- This has nothing to do with celiac however if you are low in this than all of your IgA based tests will likely be false negative

Deamidated Gliadin IgA- In IgA sufficiency this is the most accurate test on your body's response to gluten ingestion, if this is positive your body is having a negative reaction to the consumption.

Deamidated Gliadin IgA- Similar to it's IgA counterpart but particularly useful if you are IgA deficient.

Tissue Transglutaminase Ab- This is a marker of damage, if this is elevated your intestines are damaged and celiac is most likely the cause (about 95-98 percent specific to celiac)

Endomysial Ab- Another marker of damage that is extremely specific to celiac

In the event you are missing some of these tests when you get your results back make sure to push the doctor to get them, too many people get misdiagnosed because of only one or two being tested.

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