Should I Get A Second Opinion? Blood Tests/biopsy

[KristinIrwin]

Yes I'm back. My story is getting ridiculous.

 

Okay, I had a ttg blood test done in February and my result was 7.9 with a reference of < 4

 

So my doctor performed a biopsy on March 13 and the pathology report reads: "Benign duodenal tissue with preserved villois architecture. Patchy mild nonspecific increase in intraepithelial lymphocyte. Correlation with more appropriate laboratory testing would be helpful to excude early celiac disease" (However, on the phone on March 15 I was not told about the increase in intraepithelial lymphocytes- I was told my biopsy was completely normal. I only got this pathology report on May 1st).

 

So, my doctor concluded this as negative. However, I went gluten free anyway and it really was making me feel better. April 5th I went back and still wasn't feeling fully better. So, he orderd the Prometheus labs for crohns and then ordered the celiac panel again (I thought this was weird since I told him I had been gluten free since March 15th, but just went with it)

 

On April 17th, the nurse called me and specifically said "YOUR PROMETHEUS LABS WERE NORMAL, NO CELIAC AND NO CROHNS" I also asked her about my TTG and if it had gone down, and she said YES. I still stayed off of gluten despite this information.

 

I had another appointment on May 1st and decided to ask for copies of everything. She gave them to me, and while I waited for the doctor I opened them to look. Shockingly, my Celiac panel was positive in many areas, including the TTG which I had asked the nurse specifically about and was told that it was negative now.

 

Here are my results as they read directly from my lab sheet:

 

DGP IgG: Value of 14.0 with a reference range of < 4.9

DGP IgA: Value of 1.5 with a reference range of < 6.1

TTG IgA: Value of 12 with a reference range of < 10.3

EMA IgA: Value of POSITIVE with a reference range of NEGATIVE

 

(My total serum IgA was also in correct range, by the way)

 

SOOO I was utterly confused. Why would I be told that my panel was negative when it clearly is not?

 

My doctor completely denied that the nurse told me the results were negative. He said "No, you were told they were positive". I was just so angry at this point.

 

Anyway, he still would not diagnose me. He says he needs to see villi flattening in order to diagnose me. (Whats funny is that he told the the TTG is the most specific test for celiac, so he clearly is not educated about this disease).

 

As far as I am concerned, I have celiac. I am finally starting to feel like my old self again after being gluten free since March 15th.

 

What do you guys think?

 

Should I get a second opinion so that I can have a written diagnosis? (Because I have zero intentions to ever go back to my old gastro doctor)

 

Thanks to all of you who have helped me in previous posts. There is so much support here. Any help now would be greatly appreciated!

 

Kristin

[Deaminated Marcus]

What a totally unbelievable story  (and I believe you!)

 

Get a second opinion for your paper records.

 

Are you planning on doing another endoscopy?

The DGP-IgG blood test is more specific than the tTG.

That would be good enough for me.

 

And your EMA is positive.  That's 100 % specific.

What more do the doctor want?

 

This is a good reminder to always ask for a copy of our reports.

 

Thank you for sharing your story.

[kareng]

You could take it all to your regular doc or your OB/GYN/.  tell her you got a GI who won't commit to anything and you can't talk to him.  Maybe they would "declare" it for you.  Or talk to the GI and get it clarified.

[nvsmom]

It doesn't get much more positive than three different positive tests along with evidence in a biopsy.... So he won't diagnose you with positive tests... how bizarre. Unless you need the diagnostic scrap of paper stating you are a celiac, I would just run with those positive test results and start gluten-free right away.  

 

For follow-up care, about the best we get is nutrient testing. Celiacs are often low in iron, ferritin, calcium, potassium, B's, and D so you might want to check them now, and some time in the future (6-12 months) to ensure you are healing and absorbing well.  

 

Good luck and welcome back.  

[powerofpositivethinking]

grr this must be so frustrating for you    this is a doctor that does not seem to have your best interests at heart.  I guess he wants you to feel absolutely terrible with complete villi flattening before a formal diagnosis.  clearly you have celiac.  can you get your PCP or another doctor you see to give you a clear cut diagnosis?  if not, request your records and find a new gastro doctor.  do you have any dedicated celiac centers near you?  I'm sure with your paperwork, they would give you the written diagnosis.  

 

good luck!

[KristinIrwin]

Thank you all so much! I think it's so obvious that I have celiac disease, and hopefully my PCP can diagnose me officially.

I hope nobody else ever has as bad of a doctor as I did!

Another question: Nothing else can cause a positive EMA except celiac right?

Kristin

[nvsmom]

I think the EMAis over 95% specific to celiac disease. The tTG IgA is about the same (over 95%). The DGP is also really good. Here's a few sites discussing it (to show your doctor).

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Good luck!

[powerofpositivethinking]

Hi Kristin,

 

Here's a report I really like, and your doctor should be agreeable to since it comes from his peers:

 

Open Original Shared Link

 

check out page 12 for the table related to percentages of different tests

 

I haven't been able to find a reason for a raised EMA or DGP scores other than celiac.

 

ttg can be raised for a few other reasons linked here:

 

Open Original Shared Link

 

hope this helps!

[Deaminated Marcus]

Thanks powerofpositivethinking,    the GI I saws last week said it's just IBS yet IBS is a testing criteria listed on page 15. 

 

That is a thorough paper, which could help doctors be knowledgeable but if they don't read it, they will stay ignorant.

 

KristinIrwin: as   powerofpositivethinking, says, page 12 table is worth a look.      

[KristinIrwin]

Thanks guys! All of these links were extremely helpful. I want to slam this on my old doctor's desk and maybe he'll realize how little he knows about celiac testing, but obviously I never want to see him again!

Thanks again guys, I'm definitely going to show my PCP all of my tests results and hopefully he'll realize that three positive blood tests and early signs of celiac on a biopsy AND response to a gluten free diet warrant diagnosis.

Kristin

[Ollie's Mom]

Thanks guys! All of these links were extremely helpful. I want to slam this on my old doctor's desk and maybe he'll realize how little he knows about celiac testing, but obviously I never want to see him again!

Thanks again guys, I'm definitely going to show my PCP all of my tests results and hopefully he'll realize that three positive blood tests and early signs of celiac on a biopsy AND response to a gluten free diet warrant diagnosis.

Kristin

If you have your doctor's email address, just send him the link to this thread. ;-)

Good luck on your quest for a formal diagnosis. And sadly, yes, many of us have had doctors that bad (and, in some cases, worse).