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

Got A Blood Test For Ttg This Morning. Is That Enough?


possiblyglutensensitive

Recommended Posts

possiblyglutensensitive Explorer

So my doctor sent me for blood tests and as far as gluten and celiac are concerned, she asked only for the tTG test (in French it is a test for antibodies called "anti-transglutaminase"). She said it was the only one she needed to ask for.

is it enough? is it a good test?

and would it only be positive if I have celiac (actual tissue damage to my intestines), or would it be positive for gluten intolerance too? And then we would confirm celiac with biopsy?)?

I am confused as to what this test screens for and whether it can be negative even if one has a gluten intolerance.

It will take 3 to 4 weeks to get the results back. thanke for helping me understand better. :)


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



Celiac.com Sponsor (A8-M):



possiblyglutensensitive Explorer

Anyone? :)

cassP Contributor

no, it's not enough.... false negatives run so high, it's best to get a COMPLETE panel:

TTG Igg AND Iga

Antigliadin Igg AND Iga

Endomysial Antibodies

Total Iga Serum

possiblyglutensensitive Explorer

no, it's not enough.... false negatives run so high, it's best to get a COMPLETE panel:

TTG Igg AND Iga

Antigliadin Igg AND Iga

Endomysial Antibodies

Total Iga Serum

My doctor would not do them (order them from the lab). she said that if more tests needed to be done, the gastroenterologist would do them. HOW does that make any sense, since she will not refer me to one UNLESS I test positive for celiac with this test?

and it is SO hard to find a doctor here.

well too bad if the test is negative I will go gluten free anyway that's all.

is there any risk to not look further into possible intestinal damage?

divamomma Enthusiast

You at least should have also had the total IgA serum. Without that one the TTG can be false. I would ask if she can run that one as well.

possiblyglutensensitive Explorer

You at least should have also had the total IgA serum. Without that one the TTG can be false. I would ask if she can run that one as well.

It's too late now :( It usually takes months to see a doctor and I TRIED to tell her there wee several tests and should I get another one that tTG and she would not hear it, she said "That's the only one I give".

She's so incompetent. she had to look in her binder to remind herself what test to ask for. I'm so angry. It took me 1 hour on the bus to go to the doctor, then had to be without food for 12 hours to give the blood. :(

can I just go on the gluten free diet without so much worrying about test results or biopsies? is it real important to be seen frequently (to see how well the intestin heals) if you have celiac?

It's only this morning I read that Total IgA blood serum was important in case I don't have the IgA antibodies (or something like that)... Isn't the DOCTOR who shold know this stuff??

mushroom Proficient

There are many people on this board who are self-diagnosed. Some of them had negative test results, some had no testing at all because no one thought to test them and they realized themselves gluten could be a problem; some of them tested negative after they had been gluten free already, sometimes because the doctors didn't know you should be eating gluten up until the time you are tested. You do not need a doctor's permission to go on the gluten free diet, and the only thing that requires monitoring on the diet are your levels of nutrients - we are commonly low in Vits. D, B12, folate, A, E and K, in iron (ferritin), calcium, zinc, potassium, magnesium. Some of these may require supplementation at prescription levels (D3, e.g.) to bring the levels back up if low.

Generally, the advantages of having a diagnosis are 1. to convince family members and friends of your need to eat gluten free, 2. if you are school or college age to force the schools to make allowances for your need to be gluten free, and possibly 3. to drive home to yourself the need to stay gluten free so you don't start doubting yourself.

I am sorry you are having so many problems getting the proper testing; rest assured your are in good company here. Most of us have been through the process of knowing more about celiac disease than the doctor. :unsure:


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



Celiac.com Sponsor (A8-M):



Marlie Apprentice

I can tell you my child tested negative on both the tTG and the EMA tests. She was positive on both the Deamidated Gliadin Peptide IgA and IgG. With that positive they did a biopsy and the biospy showed a positive for Celiac Disease.

cassP Contributor

Most of us have been through the process of knowing more about celiac disease than the doctor. :unsure:

Aint that the TRUTH!!!!!

possiblyglutensensitive Explorer

I can tell you my child tested negative on both the tTG and the EMA tests. She was positive on both the Deamidated Gliadin Peptide IgA and IgG. With that positive they did a biopsy and the biospy showed a positive for Celiac Disease.

wow... thanks for sharing that! and i'm so glad you got a correct diagnosis after all. what is so scary is that some people get negative results and continue to eat gluten and be ill.. :(

gluten sensitivity and celiac are so sneaky... and it seems so difficult to properly asses the person.

this morning my mom sent me an email where she said she thinks we are too sensitive or complain too much. I am trying to come to terms that we are NOT these things. There IS somthing wrong with our health and there IS an answer.

ravenwoodglass Mentor

can I just go on the gluten free diet without so much worrying about test results or biopsies? is it real important to be seen frequently (to see how well the intestin heals) if you have celiac?

Yes you can go gluten free without positive blood or biopsies. Once you are gluten free though if you later decide you for some reason want to be tested you would then have to do a lengthy gluten challenge and you could still have negative test results.

I have been diagnosed for 8 years and had a scope done 5 years after diagnosis since I had my 'over 50' colonoscopy. That endo showed I had fully healed. I've only needed to see a doctor a couple of times since diagnosis but a yearly general checkup is a good idea for anyone. I don't mainly because of a strong adversion to doctors after all they put me through in the many, many years it took me to be diagnosed and the fact that I haven't even had a cold in 8 years.

It is a good idea to get screened for deficiencies and osteoporosis if your doctor will do it. You don't however need a doctors permission to live gluten free.

possiblyglutensensitive Explorer

thank you mushroom and raven

Archived

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

  • 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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.