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So Frustrated

eborzecki

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eborzecki Explorer
eborzecki
Posted

My doctors nurse calls me today and tells me the doctor says your levels are high but he wants to run other tests just to see. I told her I wanted to know what high means and neither her or the doctor would tell me because labs make mistakes. My children's pediatrician once she saw my results today's me I have Celiac especially since my sister was diagnosed through biopsy. She ordered the same test for the kids because my two year old is not gaining weight to well, he is in the average but not as well as she thinks he should be, and I think so too.

Is my doctor just not knowledgeable when it comes to this I am so frustrated with this?

Gliadin antibody Iga 56

TTg antibody 111.6

Symptoms; hair loss, anxiety, eczyma, weak teeth, brushing, irregular bowel movements and fatigue

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Takala Enthusiast
Takala
Posted

You need to show what the ranges are, not just the one number, because laboratories use different scales.

Make them give you a written copy of the test results, not just over the phone.

The doctor may want to do a biopsy and/or a genetic test next. If you have a rash, it might be DH, which you can get a skin biopsy done next to it when you are having an outbreak, and a positive result is considered a diagnosis of celiac.

Skylark Collaborator
Skylark
Posted

It's VERY hard to help with all the info broken into different threads. She has posted all the reference ranges and flags in another thread...

As you know, the lab DID make a mistake and if your Dr. is any good, he is trying to figure out what happened. High doesn't mean anything with celiac antibodies anyway. Serum antibody levels are very poorly correlated to the level of intestinal damage. The tests are either positive or negative. Hopefully he will rerun your TTG or set up a biopsy.

Good luck getting your son diagnosed!

eborzecki Explorer
eborzecki
Posted
  • Author

Would it be smart or not smart to take the written results to a GI on my own? Or should I wait till my doctor figures this out on his own, or should I start a trial diet?

Skylark Collaborator
Skylark
Posted

Would it be smart or not smart to take the written results to a GI on my own? Or should I wait till my doctor figures this out on his own, or should I start a trial diet?

Don't start a trial diet until all testing is completed, including the endoscopy. You need accurate testing for your son's sake. You might ask your Dr. for a GI referral since he's being so slow and not talking to you.

eborzecki Explorer
eborzecki
Posted
  • Author

Don't start a trial diet until all testing is completed, including the endoscopy. You need accurate testing for your son's sake. You might ask your Dr. for a GI referral since he's being so slow and not talking to you.

Thank you, I made an appointment to see a GI who supposedly sees patients with Celiac, and since I don't need a referral for him, I am not even going to tell my doctor.

My doctor is trying to tell me that labs make mistakes, but that would be a big coincident especially since my sister has Celiac which was diagnosed with a biopsy.

I decided to eat a little bit more gluten today than I usually do, and I feel horrible.

I had a rash on my neck that cleared up, and now I think it might have been DH although my dermatologist gave me medicine for ring warm and that is what it cleared up with.

So scared of tomorrows visit, and so impatient when it comes to my kids results.

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