Jump to content

  • 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

Ttg Iga

Triomam

Recommended Posts

Triomam Rookie
Triomam
Posted

I'm about to have a biopsy.....what were other peoples TTG IGA's prior to a biopsy....? Mine is above 300..... From what I've read it seems likely I've got celiac disease....what wee other peoples TTG IGA's?

Many many thanks

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

My numbers were above what the blood tests could count. I decided to have the endo and a colonoscopy. I wanted to make sure there wasn't anything else wrong and get a feel for how bad the damage was.

KCG91 Enthusiast
KCG91
Posted

Same, the normal range was 0-7 and mine were above 128, which is where the test counted to. Now down to 22 after three months gluten free. For a variety of reasons I didn't have the biopsy - I decided to go gluten-free after the blood tests and monitor my symptoms and antibody level. Seems conclusive to me and my doctor was happy to make the diagnosis just on the basis of the blood test. Good luck with your biopsy!

WinterSong Community Regular
WinterSong
Posted

My blood test results were off the charts. I got the endoscopy which confirmed Celiac. It took me a year and a half to bring my antibodies down to the normal range.

 

Good luck!

Triomam Rookie
Triomam
Posted
  • Author

Thanks all. Anyone else know what their TTG IGA levels were before diagnosis?

I'm been entirely exhausted......and had absolutely no appetite at all some days. Anyone else present like that? Since my blood tests and while I'm waiting for my biopsy I've kept a food diary and I've noticed lots of tummy symptoms..which I'd not noticed as I'm so busy......

Anyone who has had a biopsy...is there visible damage when they do the biopsy which they might be able to tell me at the time of the biopsy which is then confirmed by the biopsy results...or will I def have to just wait for results to find out.....

Thanks all

nvsmom Community Regular
nvsmom
Posted

My lab's range was 0-20 and I believe my result was >200; I don't know the actual number.  I never did the biopsy so I can't personally comment on your question about visible damage during an endoscopy, but I think that usually all that is seen is inflammation - a biopsy is usually needed to see the damage.

 

Fatigue and appetite changes are often due to celiac - fatigue is especially common. Hang in there; not much longer now! :)

NoGlutenCooties Contributor
NoGlutenCooties
Posted

My lab considered anything over 11 to be positive and mine was only 13.  However, when I got the biopsy the doctor could tell just by looking at the lining of the small intestine that I had Celiac.  I still have the picture on my fridge.  The surface is all bumpy... like rolling hills.  It's supposed to be completely smooth looking.  She sent the biopsies in to confirm and they showed moderate to severe villi damage.  And I didn't even have any symptoms before getting tested - I only requested the test because Celiac runs in my family.

 

I've only been gluten-free for just over 4 months.  When I hit the 6 month mark they'll redo my bloodwork to make sure my tissue number came down.

 

Good luck with the biopsy... it's actually a very simple procedure and doesn't take long at all.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

My blood tests showed that I was mildly positive. My endo revealed nothing significant. My biopsy results were moderate to severe damage. My main symptom was anemia -- no intestinal issues until I consumed massive amounts of gluten between tests.

Triomam Rookie
Triomam
Posted
  • Author

My blood tests showed that I was mildly positive. My endo revealed nothing significant. My biopsy results were moderate to severe damage. My main symptom was anemia -- no intestinal issues until I consumed massive amounts of gluten between tests.

Thank you everyone for all of that. Much appreciated......

Here diagnosis is based on biopsy not only bloods and at the moment I've not seen a single doctor about coeliac.....as based on the extremelych go TTG IGA I've been sent for a biopsy and bypassed seeing a consultant......I'm told I'll see one when my results are back....so I'm completely in the dark in every perspective.....except for knowing I've got a very high TTG IGA after beicomming really unwell. I'm really hoping the person doing the biopsy will at least be able to answer a couple of basic questions...as I really want to stop gluten straight after the biopsy and not wait to see a consultant....as I'm sick of feeling so poorly and exhausted.....

Anyway...could be worse!!

Did anyone else have other odd blood results? All this came about because I lost so much weight and was so exhausted that I had blood tests. They came back with quite a few low results so needed to be urgently repeated...at which point they also added in the TTG IGA one....

So I had abnormally low platelets (and bruising), very low neutrophils and also my overall white blood cell count a as also very low...all low results were below the 'normal ranges' for each element. Has anyone else presented like this?

Thank you in advance.......

KCG91 Enthusiast
KCG91
Posted

Ooh where are you for that to happen? Part of the reason I decided against having a biopsy was the three month wait to see a consultant, who would then arrange a biopsy (another wait) - so either four more months eating gluten, or two months off and then a two month challenge. Ew! Sounds good that they've sent you straight for a biopsy - hopefully that will give you more information to go on. As I understand it, after the biopsy you will already have had all the testing (bloods and internal testing) that requires you to consume gluten so perhaps you can stop after the biopsy whether you see a consultant or not? Am I right, more experienced coeliac-ers?!

nvsmom Community Regular
nvsmom
Posted

Thank you everyone for all of that. Much appreciated......

Here diagnosis is based on biopsy not only bloods and at the moment I've not seen a single doctor about coeliac.....as based on the extremelych go TTG IGA I've been sent for a biopsy and bypassed seeing a consultant......I'm told I'll see one when my results are back....so I'm completely in the dark in every perspective.....except for knowing I've got a very high TTG IGA after beicomming really unwell. I'm really hoping the person doing the biopsy will at least be able to answer a couple of basic questions...as I really want to stop gluten straight after the biopsy and not wait to see a consultant....as I'm sick of feeling so poorly and exhausted.....

Anyway...could be worse!!

Did anyone else have other odd blood results? All this came about because I lost so much weight and was so exhausted that I had blood tests. They came back with quite a few low results so needed to be urgently repeated...at which point they also added in the TTG IGA one....

So I had abnormally low platelets (and bruising), very low neutrophils and also my overall white blood cell count a as also very low...all low results were below the 'normal ranges' for each element. Has anyone else presented like this?

Thank you in advance.......

 

Yep. After the biopsy there is no need to keep eating gluten. Go gluten-free as soon as you can. And if your biopsy comes back negative, which does happen and not that infrequently despite what a doctor may claim, you still have a crazy high positive tTG IgA tests so you KNOW that you have celiac disease. Occassionally a false positive ttG IgA can happen but it is ALWAYS a mildly elevated result, and not 15 times the normal. In cases of false negatives, the result is usually caused by diabetes, thyroiditis, chronic liver disease, colitis, crohns, or a serious infection - a false positive is not a benign thing.

 

Keep in mind that when some people go gluten-free they experience a withdrawal after a few days which can last a few weeks. Headaches, fatigue, moodiness, and stomach issues can show up. Just remind yourself that it's temporary if you find yourself in that situation.

 

About the low platelets, people with thrombocytopenia often have celiac disease. Sometimes the platelet count comes up on it's own, but other times it can be a life long battle which can require meds, steroids or surgery - it really varies.

 

I had ITP (idiopathic thrombocytopenia purpura) when I was a young adult, decades before I was diagnosed with celiac disease but I know I've had it since babyhood. Mine was a fairly severe case where platelets got down to 2000 (should be over 150K) - doctors were telling me not to cough or sneeze too hard at that point. LOL Meds and setroids weren't enough for me so I eventually needed my spleen removed. (The spleen kills off anything that whiteblood cells have targeted, and in autoimmune thrombocytopenia, it is the platelets that are targeted.)  I was one of the lucky ones who this procedure works for.  :)

 

Because your WBC are low too, I doubt your thrombocytopenia will get too bad. Hopefully both will improve on the gluten-free diet. Definitely keep an eye on it.

 

This site has useful info on platelet disorders. There is a discussion board that is helpful too. Hopefully your low platelets and wbc won't be an issue for long.  Open Original Shared Link

nvsmom Community Regular
nvsmom
Posted

Oh, I forgot to add that you should be checked for anemia. When your platelets are low, you don't stop bleeding well and menstration can be very heavy. Plus many celiacs are low in ferritin, iron, and B12 which can also lead to anemia.

 

Best wishes.

Triomam Rookie
Triomam
Posted
  • Author

Oh, I forgot to add that you should be checked for anemia. When your platelets are low, you don't stop bleeding well and menstration can be very heavy. Plus many celiacs are low in ferritin, iron, and B12 which can also lead to anemia.

 

Best wishes.

Thanks again such all of you..........the information and personal experiences are fascinating ...ESP considering. I've yet to see a doctor, I'm in England and it seems systems are very different...;-)

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

I would get random bruising so I thought I was anemic, but when I had nutrient testing done, I turned out to be Vitamin K deficient and my iron was just fine.  I'd add that to the list of things to be checked since that deficiency can cause bruising.  good luck!!

Archived

This topic is now archived and is closed to further replies.

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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748
    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.