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. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem. Just a few other thoughts. I had debilitating anxiety prior to my diagnosis. I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice: for depression, The Depression...
    2. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations...
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      @knitty kitty are you kidding? I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found...
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before. I think maybe the thrush made it worse, I...
    5. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      10

      Severe severe mouth pain

      Oh, my dear! Get off that Fairlife chocolate protein shake! That's got milk in it! Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance. Damaged villi are incapable of producing lactAse, the enzyme...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,900
    • Most Online (within 30 mins)
      7,748
    sai4a
    Newest Member
    sai4a
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
×
×
  • 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.