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My Dr's Appointment Today..hhmmm...

foodiegurl

By foodiegurl
in Coping with Celiac Disease

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foodiegurl Collaborator
foodiegurl
Posted

Today I had a follow-up with my reg. doctor, the one who ordered the tests in the first place during my physical in February, which discovered I had h.pylori and Celiac.

I went in with paper and pencil ready to write down all my exact numbers of my lab work, however I wasn't able to get it.

I asked her what all the Celiac results were, and she showed me the piece of paper, and it just said "positive" I saw where it said ENDOMYSIAL and >100, but that was it...there was another one listed as well, Trans-something, but no actual numbers. Just that one 'positive'...I am not saying i am doubting I have it, but it doesn't seem nearly as detailed as others on here have had done.

I never really had symptoms before except gas/bloating, which are definitely better now. However, I bet for anyone who eliminates wheat might feel this way. Again, I am not questioning it, but just my own personal observation.

I also asked about my vitamins, since I have been veggie, I always get these tested every year anyway. My iron is low, but not anemic, the Dr said. B-12 is fine, folate is fine as well as calcium. Thyroid was fine also.

I am going back in month to retest the iron just to see if it makes a difference, though my iron has been at this level as long as i can remember, and I was anemic when I was pregnant in 2004/2005.

Should I be asking for anything for thorough or additional Celiac testing?

I have not had a biopsy. I am waiting another month to see how the h.pylori feels, and I may get it done for that. But, I large part of me doesn't want an official celiac dx on my record for insurance reasons, but then I am sure there are positive reasons to have the official dx as well.

Thanks!

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mamaw Community Regular
mamaw
Posted

You have the right to have copies of all your lab work, surgeries & so on. I would ask for copies of everything you have done that way you can reference back to see if things are improving. And the doctor should tell you what you are being tested for not just give you some vague answer. If they are not willing to explain & give copies of your results I would be searching for a new doctor....you don't even know if you are getting the correct tests for sure. Sorry for the rant but doctors make me so angry at times!

Takala Enthusiast
Takala
Posted

They don't have copy machines at this office ?

happygirl Collaborator
happygirl
Posted

They are required by law to provide you with copies of records that you request. You may have to pay for them. Call them and ask them to mail you a copy of your records.

foodiegurl Collaborator
foodiegurl
Posted
  • Author

I know I can get copies, I am not questioning that. I had the paper in my hand with the results, and could not understand it. I believe she ordered a full celiac panel, and I know it is on their lab order forms, but being that this is the only one that was labeled 'positive'...do I need more proof?

Does ENDOMYSIAL being positive means 100% I have Celiac anyway??

Mother of Jibril Enthusiast
Mother of Jibril
Posted

Endomysial antibodies are recorded as either "positive" or "negative," you don't get a quantitative score. My understanding is that EMA is very specific for celiac disease... the most specific out of all the tests.

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