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

sazzie

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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?

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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!

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

      By trents · Posted

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

      By catnapt · Posted

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

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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