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Need Advice - Seeing The Specialist Tomorrow

dblreedr

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dblreedr Newbie
dblreedr
Posted

So, I 'm finally seeing the specialist tomorrow - after a hard push to convince my GP to make it happen. I first had to go off gluten and then back on before I could get any further with the system here. What a nightmare that's been.

 

I had neg. blood tests about 5 yrs ago. My niece did too, but her biopsy 2yrs later was pos. and her specialist said all family members with neg blood tests needed to get biopsied (My brother is also celiac, but he was diagnosed after they thought he had stomach cancer, so my understanding is blood tests weren't run for him).

 

Between difficulties convincing my GP in Canada, a trans-atlantic move, no med insurance for 2.5 years, it's only now I'm getting this all sorted.

 

I'm sure the Doc will want me to do blood tests again, so can someone please list what I should be getting? My GP wanted to send me for tests, but didn't know which ones to requisition. Seriously.

 

Also, does anyone have any information I can use to convince the Doc that a biopsy is mandatory if blood tests are neg again - reasons why a diffinitive diagnosis are necessary?  I do have 4 kids, and that to me, given the widespread reluctance to test for this, is more than enough reason to have a diffinitive diagnosis.

 

I'm so tired of fighting for myself with the medical system. Every time I see a new medical professional, I have justify my medication allergies. What happens to you when you have morphine? Well, gee, I don't really know for sure because the last time a doc didn't believe me when I said I was allergic, I only have vague recollections of mass panic while the nurses replaced all the tubing out of my click your own medication machine, but the time before that, it was swelling and unbearable itching...

 

TIA.

 

C.

 

 

 

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Georgia-guy Enthusiast
Georgia-guy
Posted

Here is a list of tests that is recommended:

Total Serum IgA

tTG - IgA

tTG - IgG

EMA - IgA

DGP - IgA

DGP - IgG

As far as convincing the doctor that a biopsy should be done even with negative blood tests, I have no clue there, hopefully someone with some information on that will chime in.

nvsmom Community Regular
nvsmom
Posted

This study, on page 8, points out that a biopsy is warranted if celiac disease is highly suspected. The biopsy should only be done after positive blood tests if celiac disease is not strongly suspected... it sounds like you have good reason bto think it's celiac disease, along with a family history to back you up.

Open Original Shared Link

 

I'm guessing they'll just run labs first though.  Try to get as many tests done as possible so there will be less of a chance of false negatives ruling celiac disease out.

 

Best wishes.

dblreedr Newbie
dblreedr
Posted
  • Author

 Thank you both for this.

 

The great news is, the doc brought up the need for biopsy. No fight necessary. :D Min 5 week wait for it - but only because I've only been back on gluten for about 7 weeks and he wants me to be on for at least 3 months. I'm good with that. We are also going to do a full set of blood tests, but I need to do them just before the biopsy so that the gluten levels are about the same for both.

 

The doc was young, and works out of the university hospital. I'm assuming that may well have made a difference in how seriously this is taken. That and the massive weigh-tloss and unexplained abdominal infection I had 10 years ago... Actually, he was concerned enough about the weight-loss to ask if I want him to investigate further if my biopsy is neg.

 

Now I'm going to spend the next 5 weeks checking off all the items on my bucket list of gluten-filled delicacies - many times over.

nvsmom Community Regular
nvsmom
Posted

Have a cinnamon bun for me.  :D Best wishes!

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