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Need Assistance With Testing
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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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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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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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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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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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    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
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