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Second Opinion

mstrain

By mstrain
in Doctors

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mstrain Rookie
mstrain
Posted

I believe I received some poor advice from my doctor, like so many of you have. Areas of concern:

1) despite Marsh 1 lesions and weak positive blood results, my doctor said I don't have celiac disease yet, but probably will be "full blown" within five years.

2) recommends I have another blood panel done in six weeks. Says I don't have to eat gluten except for the week before the test is done. However, he also says that I don't need to be on a gluten free diet. ???? (I've gone gluten-free!)

3) Advised me to not inform my relatives at this time. (I sent e-mail to every one! My mom got tested last week and I am checking with my childrens' pediatrician at the end of August)

From what I read I've come to understand there is no "in-between" stage - you either have it or you don't. What is strange is that I am completely asymptomatic - I guess my genes have just been "triggered" by my last pregnancy/childbirth. I do, however, have hypothyroidism, brought on by my second pregnancy. (neddless to say, I'm done having kids!!)

So, I scheduled a consultation with another doctor that was on the recommendation list on this web site. Are there any specific questions I should ask this new doctor, or should I just have him analyze my bloodwork, ultrasound and biopsy? Thanks for your help!

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KaitiUSA Enthusiast
KaitiUSA
Posted

Stupid doctor...

You should be gluten free. If the biopsy came back positive you have celiac. It may just not be extensive damage but you have celiac.

Have you had blood tests done before? The same ones that were positive should be followed up on in a few months to see if levels went down yet. They are used to measure compliance.

Have the doctor analyze the results of your tests. Make sure the doctor is knowledgable with celiac. As you can see some of them don't have a clue even if it came up and bit them.

mstrain Rookie
mstrain
Posted
  • Author

Thanks, Kaiti! And thanks again for responding to all of my e-mails before I figured out how to use this message board. You've been a great help, as have so many of you! I'm loosing sleep staying up to the wee hours of the morning reading old posts, but they have been so informative so it is well worth it. :lol:

mstrain Rookie
mstrain
Posted
  • Author

Wasn't sure where to post this - here or in "prediagnosis" or "postdiagnosis" - I am in such limbo land! Anyway, I think I may have just wasted a lot of time and money. I just came home from my consultation and this doctor agreed with my first doctor. These are the results I had him look at:

antigliadin IgA = 5; positive = >4

antigliadinIgG IgG = 2; positive >9

transgluaminase (tTG) = 6 weak positive 4 - 10

reticulin IgA Ab = negative

biopsy - "very mild non-specific chronic duodenitis with focal intraepithelial lymphocytosis. Villous architecture preserved."

Stomach biopsy - diff-quik stain negative for H. pylori

He too said that this results are inconclusive and that I should eat gluten "at least for several weeks" and then have another biospy or bloodwork again.

Does anyone else have similar test results? What was your official diagnosis? Have you gone gluten-free? I'm really in a quandry as to what to do. I don't want to drag this out nor do I want to go for unneccesary testing, but I do want an answer. And I don't want to cause more damage or complications. Seems to me that "several weeks" of eating gluten wouldn't be long enough and I'll just be in the same boat I am now. Please advise!!!

KaitiUSA Enthusiast
KaitiUSA
Posted

Those results are positive...whose the doctor trying to kid here?

Those tests gave you an answer-gluten is damaging to you and you need to avoid it.

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