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Need Assistance With Testing


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4 replies to this topic

#1 dasuriano

 
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Posted 18 November 2012 - 06:03 PM

I've been struggling with digestive problems for the last few years. My doctor has said IBS, lactose intolerance, and a few other things. I noticed that it was gluten-containing foods and brought this to his attention. He did blood tests, which showed negative. Went to the gastroenterologist in the same practice. She said I had too low of a negative to say not celiac, so she wanted to test me for everything GI related under the sun, then return to the endoscopy for celiac. I decided to try eliminating gluten from my diet and it worked. It even cleared up things that I never were thought to be gluten related. So, I went back to the gastroenterologist. The first one was out on maternity, so I saw an associate. He looked at the labs, said it has nothing to do with gluten at all, since the labs were negative. He said my problem was residual from a childhood bacterial infection and that gluten was a coincidence. He told me to continue gluten free and come back if anything changes.

Here are the labs, so hopefully someone here can help:
IGA .99 Normal <45.0
IGG 14.05 Normal <45.0
tTG 2 Normal 0-19
Reticulin <1:5 Normal <1:5
Endomysial IGA Negative
IGA Total 65 Low 68-378
IGD Serum <.07 Not sure on this one, since it lists <=15.3. Does that mean less than or equal to in this case?
IGG Total 1310 Normal 768-1632
IGM 141 Normal 60-263

Some co-workers had mentioned that they should have done an anemia panel as well as a total antibody count panel as well. Does it sound like they missed tests here that could have shown the real picture? And does anyone have any tips for finding a gastroenterologist, since I feel like I need a better one?

Thanks.
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#2 GottaSki

 
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Posted 18 November 2012 - 07:07 PM

Were you gluten free or light prior to the blood draw? You need to be ingesting gluten to produce the antibodies measured in celiac blood work.

I'm not sure, but it looks like the only celiac antibody tests were:

tTG-IgA
EMA-IgA = Endomysial

you also had low total IgA which means the above two tests were likely inaccurate even if you were eating gluten.

your total IgG looks strong so celiac antibody IgG based tests are a better indication of celiac disease - if you are eating gluten.

tTG-IgG
AGA-IgG = Gliadin
DGP-IgG = Deamidated Gliadin Peptide

Yes, nutrient testing is an important part of celiac diagnosis. Bs, D, K, Iron, Ferritin, Copper and Zinc are what my doc orders at Dx and check ups.

As far as finding another GI - check with a local celiac support group or try a google search for your city+celiac+ gastroenterology. When you call to make an appt - ask the scheduler if this doctor specializes in Celiac Disease.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 dasuriano

 
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Posted 20 November 2012 - 06:07 PM

Once I had an idea of what it was, I tended to eat whatever I could that had gluten in it, since I had the mindset that I wouldn't be able to eat it much longer. I recall that the GI I went to first said that I was only tested for celiac markers, but offered no additional insight into that.
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#4 GottaSki

 
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Posted 20 November 2012 - 07:04 PM

I recall that the GI I went to first said that I was only tested for celiac markers, but offered no additional insight into that.


This, unfortunately, is quite common. A second opinion would be a very good way to proceed.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 guest134

 
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Posted 20 November 2012 - 08:42 PM

He said my problem was residual from a childhood bacterial infection and that gluten was a coincidence.


What? How old are you? A residual problem from a childhood bacterial infection? That makes NO sense, residual symptoms from even the worst infections should last no longer than a year. What was the infection and how long ago was it?
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