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

Positive Ttg - Can It Be An Indication Of Something Else?

sazzie

Recommended Posts

sazzie Rookie
sazzie
Posted

Abit of a long story but anyway it started 6 months ago with a blood test showing low ferratin levels, i was then tested for celiacs by way of a TTG and EMA blood test both of which came back weakly positive (ttg anything <5 was negative mine was 5 and the ema was weak)

The specialist i was referred to said that he didnt think i had it because i had no symptoms and basically they had just stuffed up the tests.

I have been on a waiting list since then to have the biopsys taken, however i went back and saw the same doctor recently as i have been having some bowel issues including intermittent diarrhea and some abdo cramping.

He said it was more likely sounding like chrohns disease or IBS, but sent me off for more blood tests anyway.

I saw my local doctor last week and she said it came back positive for the ttg i glanced at my paperwork and all i saw was transglutamine >20 and my results in bold 39(H) next to it, i see the specialist again in a couple of days so i will get the other full results then as he did a full celiac panel, however just wondering if there can be any other causes to positive ttg levels other than celiacs or am i looking at most probably celiacs?

reason being is that i am looking at another 6 -7 month wait for the biopsy and if i am definetly positive for it i dont think i want to wait another 6-7 months of damaging my body when i could start fixing it now?

Any thoughts?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You are most likely looking at celiac. With a postive blood test the choice to biopsy is yours. If you are going to biopsy you do have to continue with a full gluten diet until that is done. There is also a risk of a false negative with the biopsy. You have 22 ft of small intestine and damage can be patchy and if the right area is not biopsied the result will be a false negative. You do have the choice of going on the diet and skipping the biopsy. There are cases where a doctor will give a firm diagnosis with the positive bloods and response to the diet.

ang1e0251 Contributor
ang1e0251
Posted

It's true, you will have to continue eating gluten if you want to be tested by biopsy. Even then it may not show positive if performed incorrectly or if not read correctly. It's your choice.

Second choice, go on a gluten free diet and see how you feel. If you feel as good as I did, you will not want to eat gluten again, certainly not for 3 months for testing. Either way, we support you and your choices. Keep us posted.

nora-n Rookie
nora-n
Posted

Your EMA was positive too, and that means celiac, it is highly specific, and you should have the scope now.

The ttg can be weak positive from giardiasis and some other things.

Eat a lot of gluten before the biopsy.

I am in Europe, and here we do not recommend going gluten-free to see if one gets better.

nora

ang1e0251 Contributor
ang1e0251
Posted

The reason some of us choose to go gluten-free instead of testing is the delay in testing. This person is saying it could be months for her to be tested. In the US you may have to wait a couple of months or you could be lucky and get in sooner. That's a very long time to eat gluten and continue the damage it brings. The individual must make their own choices and I feel that responsibly we must offer every choice available for that individual. Then we should support their choice regardless of what it is.

sazzie Rookie
sazzie
Posted
  • Author

Thank you for all your replies, they are appreciated.

I went and saw my specialist today, he has confirmed that the blood tests were positive for celiacs and has managed to book me in for the biopsy on the 23rd of December bit close to christmas but i dont care would rather get this over and done with.

In regards to the waiting times over here in australia we have both private and public health system. Private is optional and abit expensive however if you need an op or anything it is done right away.

Public is free however the wait times for an op or anything is anywhere between a couple of weeks to a couple of years depending on the urgency.

I have already been on the waiting list for over 6 months.

I am starting to worry as i was discussing the results with him today and he basically said that the ttg test is specific to celiacs, and i am have a very high chance of having it based on results, that was okay, then i asked him what happens if the biopsy was negative and he said then i dont have it.

then i said that i thought sometimes the damage can be patchy, he assured me that if he couldnt find anything then i dont have it.

Now i know that is wrong (thanks to everyone who writes on these boards) but i am worried the biopsy is going to come back negative and all of this will have been for nothing.

Oh another thing anything under 20 was negative for the ttg and up to 40 was weak positive and over 40 was definetly positive and considering mine was 39 he said that he would take that as a positive anyway. So mine was a pretty low number considering but just wondering do these numbers reflect the amount of damage that has been done?

I have a feeling it has only just come on this year but i am also worried that with such low numbers nothing is going to show up anyway.

I guess i will just see what the biopsy says on the 23rd, no doubt i will be back to ask some more questions then!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.