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

What Does A Weak Positive Ttga Mean?


roses8

Recommended Posts

roses8 Newbie

Hi there,

I was wondering if anyone knows what it means to have a weak positive TTGA (tissue transglutamine level? I have had two consecutive weak positive results. What is the likelihood that someone with a weak positive result is actually a true celiac? I have had persistent gas and bloating, and lactose intolerance. My doctor says a biopsy is the next step, but that seems a bit drastic.

Actually, I am confused about the research that I have read because; usually there are lots of references to the presence of these ttga auto antibodies, as being a strong indication of celiac. But if that is true, why are there any normal levels of these antibodies, do most people have a small amount of them, or not? And if normal people have them, what are they for?

Thanks for any insight into this,

Roses


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

A positive tTG (even a weak positive) is indicative of Celiac. The next logical step would be to have the biopsy or begin the diet. If the biopsy is negative you could still have Celiac as the biopsy can't rule OUT celiac. If its positive then there are no doubts about it. The biopsy is no big deal...its totally pain-free. I'm pretty sure its best to have no tTG present but if its higher than what is considered to be the "normal" range then this indicates that damage is occurring due to gluten consumption.

key Contributor

I had a weak positive too, but I had been on the gluten-free diet for two months already. I was feeling better and didn't wish to start eating gluten again for a biopsy. I would recommend you have the biopsy. My GI told me I probably had Celiac (my son has it too) and to follow the diet. My level was two points below the abnormal. He said most people that don't have it, would have a number of Zero. My other son got tested and his number was zero, plus all his other celiac panel levels were normal.

The biopsy is painless so they say and I sort of wish I had had it done, but not willing to make myself sick again to have it done.

Monica

jnclelland Contributor
He said most people that don't have it, would have a number of Zero.

Really? I had this test done after 6 weeks off wheat, and my numbers were 3.8 IGA/3.9 IGG, with "normal" being anything less than 20. I assumed that this was a definitive negative - not too surprising since I had been off wheat for 6 weeks. But I *was* still eating barley and rye at the time, and I've been trying to find out if a test done at that point could yield any useful information at all. It would be nice to have something in the way of useful test results, but no way am I going back on gluten just for that!

Jeanne

roses8 Newbie

Jeanne,

That was my understanding too, that anything less than 20 was negative, and that anything over twenty is suspect. But, I don't know whether most "normal" people have numbers that are close to twenty, or not.

My numbers for TTGA were in the low mid twenties. I have heard that most celiacs not on the diet have much higher numbers than that, but I'm not sure.

It is very confusing. Does anyone else remember their pre-diagnosis antibody level ?

AmandaD Community Regular

My TTG antibody level at my doctor's office was only 10.5 and they found moderate damage when they did the endoscopy...weird?

Jeanne,

That was my understanding too, that anything less than 20 was negative, and that anything over twenty is suspect. But, I don't know whether most "normal" people have numbers that are close to twenty, or not.

My numbers for TTGA were in the low mid twenties. I have heard that most celiacs not on the diet have much higher numbers than that, but I'm not sure.

It is very confusing. Does anyone else remember their pre-diagnosis antibody level ?

ryebaby0 Enthusiast

My son's pre-dx Ttg was 152, after 3 months gluten-free it was 75, and after 20 months it was 8.

My husband's Ttg was 24, a "weak positive" and his GI wanted to scope him. My son's peds GI said that in her opinion, there's no such thing as a weak positive -- non-celiacs are clearly negative, celiacs (silent ones included) are positive or weakly positive. He opted not to have a biopsy, on the grounds that it could easily miss a damaged spot, come back negative, and he'd be misdiagnosed.

So he went gluten-free, has never felt better in his whole life. Has not yet been re-tested


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



Celiac.com Sponsor (A8-M):



floridanative Community Regular

Sorry to add to the confusion but my tTg was only a 10 in Sept. (doc said probably have Celiac) and only a 7 in Nov. (2nd doc said no way I have Celiac) so I went to a 3rd doc to break the tie. He looked at both test result labs and said my number wa coming down, not going up, so I don't have it. Insisted on a biopsy b/c other 2 docs said I needed it. 3rd doc called last Monday to say my results show classic Celiac Sprue. Also on my lab pages it clearly states 5-9 is weak positive and 10+ is positive but apparently every lab is different. No wonder everyone is so confused about this condition.

AmandaD Community Regular

Good for you, floridanative - I'm glad you were diagnosed solidly sprue and that you pursued it. Funny how doctors are...

Sorry to add to the confusion but my tTg was only a 10 in Sept. (doc said probably have Celiac) and only a 7 in Nov. (2nd doc said no way I have Celiac) so I went to a 3rd doc to break the tie. He looked at both test result labs and said my number wa coming down, not going up, so I don't have it. Insisted on a biopsy b/c other 2 docs said I needed it. 3rd doc called last Monday to say my results show classic Celiac Sprue. Also on my lab pages it clearly states 5-9 is weak positive and 10+ is positive but apparently every lab is different. No wonder everyone is so confused about this condition.
SueC Explorer

Please be careful when looking at the numbers. Different labs have different values for negative and positive. It all depends on where your bloodwork is sent. The lab should provide the doctor with thier specific normal and abnormal ranges.

floridanative Community Regular

Thanks AmandaD. When I think back at how I had to trick the doc into doing the biopsy by saying that I'd just go back to the first GI and get him to do it, I realized that if someone less headstrong than I had been sitting in his office, they would have left happily with the untrue knowledge that they didnt' have Celiac and continued to get sicker. Once he called last week I realized why he would not look me in the eyes after the endo. I'm sure he saw the damage but would not mention it to me since he basically treated me like a hypochondriac in his office 10 days before. Nice!

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.