Positive TGa test, negative biopsy... so confused

[PolskaKrys]

Hi everyone!

It's my first time posting here although I've read through hundreds of posts trying to figure out what is going on with me.  In November 2017 I went to see my GP as I was experiencing abdominal pain, bloating, diarrhea, etc.  I randomly mentioned I wanted to be tested for celiac disease and luckily my doctor listened and ran the tests.  My test results are as follows:

TISSUE TRANSGLUTAMINASE IgG

0.89 Index

<=0.92 Index

Tissue transglutaminase IgA

4.48 Index

<=0.90 Index

Even before I got the results, I immediately started eating gluten-free because I had been feeling terrible any time I ate something deep friend, had a beer, or ate pasta.  My doctor responded that I possibly had celiac and scheduled a biopsy 6 weeks out.. she mentioned I should eat gluten but did not really reiterate how important this was during this time.. I continued to eat gluten free because I noticed immediate results and started feeling better- my biopsy came back negative.  I never got a copy of the biopsy results.  

My doctor then ran a genetic test which she said also came back negative too (never got a copy results)- but then said it was highly unlikely that I have celiac and I did not get any support from her after that.  

Since then, I have been mostly gluten-free.  Since I was told I probably did not have it, I ate gluten on special occasions and always felt sick.  In the past 6 weeks, I have done a lot of celebrating for birthdays and anniversaries and indulged in all my favorite gluten foods..since then, I have felt horrible..bloating, diarrhea, anxiety... I've even developed neuropathy in the left side of my body (which I read is common for celiac/gluten sensitivity). I get numbness/tingling in my hands and feet which has really scared me.  I'm going to see my GP today to get more tests done to rule out other causes of the neuropathy, but I'm frustrated because I don't have a definite answer on whether or not I have celiac disease.  Is it possible to still have it even with a negative biopsy and negative genetic test?  My parents refuse to get the tests done, but one of my brothers is strictly gluten free and whenever he eats gluten he gets extremely sick and even develops the "celiac rash."  He also gets neuropathy whenever he is glutened.  

I guess I just need some answers.  I'm going to start a strict gluten-free diet to see if my symptoms improve again. This whole process has caused me so much stress and anxiety.  I need some advice from the celiac family! Thanks in advance!!

[PK-432]

The same has happened to me and still I am not having any proper answer.  But my gene test is positive for celiac disease and at the time of endoscopy I was on gluten free diet.  Go to someother competent gastroentrologist. 

I am now on gluten diet and my health is declining badly. 

Best of luck

[tessa25]

If eating gluten makes you sick and going strictly gluten free makes you feel good, then go strictly gluten free.