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Negative blood test but still concerned!

zs1994

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zs1994 Newbie
zs1994
Posted

Hi all,

Back in September, I had stomach issues for a few weeks. My doctor said it was a virus but ordered me a blood test for Coeliac Disease as my sister has the condition. My results came back as:

Tissue Transglutaminase Antibodies (tTG-IgA) : 4.9 (5.00 - 20.00) 

Doctor said nothing to worry about. However I still have periods where I have gas and soft stools (not diahoerra). Also, my sleeping pattern has been a mess since September and I've had mouth ulcers at least twice since then too. Is it worth going back and asking for a biopsy? 

Thank you all in advance!

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cyclinglady Grand Master
cyclinglady
Posted

Before asking for a biopsy, you might ask for a complete celiac blood panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG
-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG
-EMA IgA 
-total serum IgA and IgG (control test)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
-endoscopic biopsy - make sure at least 6 samples are taken
 
VERY IMPORTANT:  Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate.  
 
(Source: NVSMOM -- ?)
 
Why the full panel?  The TTG does not catch everyone.   My TTG tests are always negative (even in follow-up testing).  I was positive on only the DGP IGA.  Go figure!  How did your sister test?  

 

Welcome to the forum and let us know how it goes! 

 
CherylS Apprentice
CherylS
Posted

I tested Negative in August on the celiac panel. My symptoms continued and I had to go back to my doctor for a follow up on my anemia.  She referred me to a GI doctor because my numbers didn't improve.  The GI doctor felt that I didn't have celiac, but she ran the genetic test to be thorough and so that we could confidently eliminate it from the list of potential diagnoses.  The genetic test  came back positive.  Since I'm having symptoms I'm getting an EGD with biopsies in a couple of weeks.  The doctor said that she rarely sees people test negative on the panel and have celiac, but it does happen, and there's no explanation to why it happens because our bodies are complex.

My take on your situation; if you aren't confident that celiac isn't your problem and you haven't exhausted all testing options, then keep going.  You only get one body and one life and nobody is going to advocate for you as well as you.

zs1994 Newbie
zs1994
Posted
  • Author
2 hours ago, CherylS said:

I tested Negative in August on the celiac panel. My symptoms continued and I had to go back to my doctor for a follow up on my anemia.  She referred me to a GI doctor because my numbers didn't improve.  The GI doctor felt that I didn't have celiac, but she ran the genetic test to be thorough and so that we could confidently eliminate it from the list of potential diagnoses.  The genetic test  came back positive.  Since I'm having symptoms I'm getting an EGD with biopsies in a couple of weeks.  The doctor said that she rarely sees people test negative on the panel and have celiac, but it does happen, and there's no explanation to why it happens because our bodies are complex.

My take on your situation; if you aren't confident that celiac isn't your problem and you haven't exhausted all testing options, then keep going.  You only get one body and one life and nobody is going to advocate for you as well as you.

Hi, thank you for your reply. I plan on going back for peace of mind. Can you describe your continuing symptoms after your blood test please? 

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      symptoms.

      By trents · Posted

      You might look into wearing an N95 mask when others are creating baked goods with wheat flour in your environment.
    • Rebeccaj
      symptoms.

      By Rebeccaj · Posted

      @trents thank you for that information. My parents feel that cooking flour in toaster isn't a thing as its already cooked product before made? but Airbourne particles is my fear. Like I have had symptoms from 6 meters away had to leave massive migraine. 
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      By knitty kitty · Posted

      Yes, except for the most sensitive, cross contamination from airborne gluten should be minimal. Highly sensitive people may have nutritional deficiencies.  Many times their bodies are in a highly inflamed state from Celiac, with high levels of histamine and homocysteine.  Vitamins are needed to break down histamine released from immune cells like mast cells that get over stimulated and produce histamine at the least provocation as part of the immune response to gluten. This can last even after gluten exposure is ended.  Thiamine supplementation helps calm the mast cells.  Vitamin D helps calm the immune system.  Other B vitamins and minerals are needed to correct the nutritional deficiencies that developed while the villi were damaged and not able to absorb nutrients.  The villi need vitamins and minerals to repair themselves and grow new villi. Focus on eating a nutritional dense, low inflammation diet, like the Autoimmune Protocol Diet, and supplementing to correct dietary deficiencies.  Once your body has the vitamins and minerals needed, the body can begin healing itself.  You can have nutritional deficiencies even if blood tests say you have "normal" blood levels of vitamins.  Blood is a transport system carrying vitamins from the digestive system to organs and tissues.  Vitamins are used inside cells where they cannot be measured.   Please discuss with your doctor and dietician supplementing vitamins and minerals while trying to heal.  
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      By trents · Posted

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