Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Positive TGa test, negative biopsy... so confused

PolskaKrys
 Share

Recommended Posts

PolskaKrys Newbie
PolskaKrys
Posted

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


PK-432 Explorer
PK-432
Posted

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 Rising Star
tessa25
Posted

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

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
    2. junell
      - junell posted a topic in Related Issues & Disorders
      1

      Help!

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea...
    3. cristiana
      - cristiana replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Struggling to get into a good pattern

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time. Thankfully he is a fantastic GI, with a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously! But I needed my mind to be put at rest as my symptoms...
    4. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Struggling to get into a good pattern

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
    5. Scott Adams
      - Scott Adams replied to AnneBSunflower's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      mystery gluten?

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance"...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,642
    • Most Online (within 30 mins)
      7,748
    Wagner
    Newest Member
    Wagner
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
    • Scott Adams
      mystery gluten?

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  I didn't notice any gluten ingredients in Kirkland Almond non-dairy beverage, however it does contain Locust Bean Gum. Some gums may cause IBS-type issues in some people with celiac disease or gluten sensitivity:    
×
×
  • Create New...