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Another post for help understanding test results


someguy

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someguy Newbie

Hi everyone, I'm new here and was wondering if anyone could shed some light on recent blood tests while I wait for feedback from my dr.

I had a rough winter with the flu and other sinus infections / bronchitis.  While out of the country, I spiked a fever, had some back pain, nausea, etc.  When I returned, I got checked out by the doctor.  Everything came back OK, but they were concerned over the pains in my side and back.  That had all gone away, but I did the CT scan anyway.  All organs look OK, but they noted a section of small bowel thickening and fat deposits.  This was similar to an image from 10 yrs prior for something unrelated.  My GI recommended a colonoscopy to get a visual and rule out Crohn's.  Procedure was fine and biopsy was normal.  No Crohn's I guess.

The GI recommended a capsule endoscopy to see the upper portion of the GI tract that he could not see with the colonoscopy.  Nothing abnormal again.  He then schedule blood tests to check for Celiac.  Here is what is posted on Patient Gateway:

Immunoglobulin A - Details

Component Your Value Standard Range
IgA 201 mg/dL 82 - 453 mg/dL

Tissue transglutaminase IgA - Details

Component Your Value Standard Range
TTG IGA ANTIBODY 6.5 U/mL <4.0 (Negative) U/mL
(NOTE)
Interpretation: Weak Positive (4.0-10.0)

Gliadin deamidated antibody, IgG/IgA - Details

Component Your Value Standard Range
Gliadin Ab, IGA 13.9 U <20.0 (Negative) U
GLIADIN AB IGG 87.5 U <20.0 (Negative) U
(NOTE)
Interpretation: Positive (>30.0)

So, it looks like some tests are negative and some are positive.  To make matters worse, I had started a ketogenic diet prior to these tests, so I had not really been consuming gluten since keto greatly reduces carb intake.  The doctor did not mention I needed gluten in my diet and since I wasn't really sure what he was looking for, I didn't mention it.  I'm wondering if some of the negatives would turn positive and my positive would go higher or if it just invalidates the results.  I have never had any of the symptoms that I hear a lot of people describe and have no known family history of Celiac.  This doctor takes forever to get in contact with, so I have an office visit with my PCP next week to make sure I'm not just on a witch hunt.  Clearly I will go gluten-free if I do indeed have Celiac's, but I want to make sure I'm taking the right steps and get a more responsive GI doc.  

Thanks for any insight or comments!

 


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RMJ Mentor

You don’t have to have positives on all the tests to have celiac.  Those values would likely go up if you were eating more gluten.  I don’t know if a capsule endoscopy can detect celiac or not.  The magnification might not be high enough.  A good question for the gastroenterologist. 

tessa25 Rising Star

A positive on any one celiac test should lead to a gastroenterologist doing an endoscopy/biopsies to verify celiac. You need to be eating gluten daily until celiac testing is done.

someguy Newbie

Thanks.  I have a follow up with the PCP next week to go over all of the previous tests and make a plan for next steps.  I left a message for the GI regarding my diet in case he wanted to have the blood test repeated and have me eat gluten.  No response.  It took over 2 months to get the capsule results after leaving voicemail and patient gateway e-mails, so I'm not holding my breath.  I will see if my PCP can recommend someone more responsive for the next steps.  

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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