Confused on test results

[MissMom03]

I have been trying to get answers for SO. MANY. YEARS.

Vomiting, nausea, diarrhea, bloating, constipation, canker sores, migraines, all those lovelies.  One doctor told me I could get my gallbladder out, but he didnt know if it would really help.  One told me I needed antidepressants.  

Fast forward to now.  Went to the doctor for a pain in my abdomen that wouldn't go away.  This was a new doc, so I told her all my usual symptoms of the last 20 years.  She recommended me being tested for Celiac.  The only problem?  I had stopped eating gluten for about the last year. (I had friends that did "paleo" and I wanted to check it out.  I felt great and my symptoms disappeared!  Unfortunately, I ate a little around the holidays, and hence my symptoms reappearing again.  Ugh. Stupid me.)  I had my blood drawn the next day and an endoscopy/colonoscopy two weeks later. Still not eating the gluten.  She said they would probably come up negative, but she wanted to see.

My bloodwork came up negative, EXCEPT my TTG IGG.  That shows antibody present.  TTG IGG AB was 7.  (Range of >6 antibody detected).  Again, this is without eating gluten for about a year, except a couple of quick sneaks of holiday noms. 

Enodoscopy didnt show any villi atrophy.  But the GI doc said that would be the case if I was gluten free.  It did show gastritis and inflammation in the small intestines.  

I have celiac family members, as well as family members with non-Hodgkin's lymphoma and colon cancer.  I'm deficient in Vit D and B12.  Not sure what else.  Doc says next is the genetic testing.  

Has anyone had all their labwork negative except one?  While eating gluten free?  

Thanks so much for any help and insight! Much appreciated!

[squirmingitch]

Blood work would be expected to be negative if you had been gluten free or even gluten light. You've had some gluten sneaking in & not just over the holidays -- that would not still be showing up I imagine. You're lucky you got any positives at all. It sounds like you've got a doc now that knows what she's talking about. Unless you do a gluten challenge of 2 weeks & go back & have another endoscopy then you stand with the test results you have.

Seriously, with the family history as well as your vitamin levels, plus your health issues; it's pretty much a done deal that you are celiac. It sounds as if your doc is trying to give you a dx of celiac by doing the genetic testing. She may be thinking with the 1 positive blood, family history, symptoms, genetics and symptoms resolving on a gluten free diet that she could then feel comfortable giving you an official dx of celiac.

[Irene Joanne]

12 hours ago, squirmingitch said:

Blood work would be expected to be negative if you had been gluten free or even gluten light. You've had some gluten sneaking in & not just over the holidays -- that would not still be showing up I imagine. You're lucky you got any positives at all. It sounds like you've got a doc now that knows what she's talking about. Unless you do a gluten challenge of 2 weeks & go back & have another endoscopy then you stand with the test results you have.

Seriously, with the family history as well as your vitamin levels, plus your health issues; it's pretty much a done deal that you are celiac. It sounds as if your doc is trying to give you a dx of celiac by doing the genetic testing. She may be thinking with the 1 positive blood, family history, symptoms, genetics and symptoms resolving on a gluten free diet that she could then feel comfortable giving you an official dx of celiac.

A gluten challenge only needs to be two weeks for a biopsy? I thought it was more like 3 months

[squirmingitch]

56 minutes ago, Irene Joanne said:

A gluten challenge only needs to be two weeks for a biopsy? I thought it was more like 3 months

It's 3 months for blood but 2 weeks for an endoscopic biopsy.

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[SLLRunner]

Also, this from the University of Chicago Medicine:  Open Original Shared Link

Quote

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

 

[Irene Joanne]

4 hours ago, squirmingitch said:

It's 3 months for blood but 2 weeks for an endoscopic biopsy.

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Nice to know! Thanks?

[squirmingitch]

17 hours ago, Irene Joanne said:

Nice to know! Thanks?

You're very welcome!

[Malissa]

 I have a somewhat similar experience.   I have been gluten light for well over a year, because I have figured out on my own I felt better when I did not eat it. With continuing gastrointestinal problems, I went to the doctor. I was only tested for celiac via a biopsy from a scope, as the doctor did not expect I would have celiac, but figured she may as well test for it while she was in there. Well, I did show the flattened villi,  so I was given a celiac diagnosis. She wanted to confirm it with the antibody blood test, but it came back negative.  However, since I had been gluten light for such a long period, she then wanted to confirm via a genotyping test. Basically, I had one of two genetic markers come back positive.  So she still considers me celiac, but has not ruled out that I may have something else going on as well, such as SBIO, lactose intolerance, or something else. I'll go back in at the three-month mark in a few weeks, so that we can discuss how I'm doing so far. But since I have  really come to understand more about and practice total gluten elimination, I feel so, so much better! Except for those unexplained instances when I don't… Like now, when I can't sleep because my stomach is rolling and uncomfortable…