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Just Had My Endoscopy And Have Very High Ttg Iga

Triomam

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Triomam Rookie
Triomam
Posted

Hi all

I've just had my waited endoscopy. My TTG IGA is above 300 and my gp and endoscopist both think celiac disease highly likely with a TTG IGA that high. The endoscopy didn't show visible damage, but I know that is why biopsies are done.

So I was wondering.....what did your biopsies show visibly, then via biopsy compared to Your TTG IGA scores.....

Thank you

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

You're going to get very tired of hearing this, but it's the annoying truth... everyone is different.  In my case, my labs considered anything above 11 on the ttg iga as positive.  Mine was only 13.  But my endoscopy showed visible signs of inflammation - the surface was bumpy looking, like rolling hills - and the biopsy showed moderate to severe villi damage.

So there isn't necessary a direct correlation between the ttg iga number and the extent of villi damage.  You can have relatively low ttg iga and pretty severe damage, or you could have a very high ttg iga and have the villi damage be relatively mild.

Also, the inflammation and villi damage can get better and worse over time and is also spotty - meaning it can be easily missed on the biopsy.  Do you know how many biopsies they took?  They should take at least 5 or 6 of them, but some ignorant doctors only take 1 or 2.

 

FWIW... with a ttg iga over over 300 I think you can rest assured that you have Celiac - regardless of the biopsy results.

nvsmom Community Regular
nvsmom
Posted

I agree with Cooties, a high tTG IgA is a sure sign of celiac disease. The tTG IgA can ave false negatives but they tend to always be a very weak positive, and a 300 is about as positive ad it gets.

I had a tTG IgA of >200, as well as a positive EMA IgA, so I skipped the endoscopic biopsy with my doctor's blessing. I knew damage could be missed in the biopsy and I thought that might weaken my resolve to go gluten-free. I have no idea what my villi looked like, but I am guessing they look much better now. ;)

Best wishes with the gluten-free diet. Have you started it yet?

Triomam Rookie
Triomam
Posted
  • Author

Hi

Thanks both of you.....as I'm in England the biopsy is how they agree a formal diagnosis.......so not really a choice here! Although like you've said.....a positive biopsy confirms but a negative doesn't rule it out with a TTG IGa over 300! Almost certainly just means they'll have taken a biopsy from a 'good bit' that's how it is over here!.....if, as it seems, almost nothing else causes such a high TTG IGA......(hardly a borderline result!) it almost seems mad to do an endoscopy.....but so be it......I'm at the stage where I hope it confirms it...so that I have the answers.....as a I suspect if it doesn't confirm it...ill end up being advised to stay gluten-free anyway! Started today......as my nos are so high I was told I might as well start as soon as my biopsy....as it's likely...so why put it off......

Although being veggie...I'm not quite sure what I'm going to eat!;-). But it could be worse.....so can't complain

Thanks

purpleorchid620 Newbie
purpleorchid620
Posted

Hi all

I've just had my waited endoscopy. My TTG IGA is above 300 and my gp and endoscopist both think celiac disease highly likely with a TTG IGA that high. The endoscopy didn't show visible damage, but I know that is why biopsies are done.

So I was wondering.....what did your biopsies show visibly, then via biopsy compared to Your TTG IGA scores.....

Thank you

Hello Triomam. I have had two blood draws done. one last month and one last week. My first tTG was 11 and second was 74. My Gliadin also increased from 10 to 20. The GI doctor told me that it is defiantly Celiac and I go in for a Scope on Friday. I am nervous to see how it looks and how much damage is done if any. Have you seen a GI doctor?

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Just wanted to add that they also check for other nasty stuff when they test the biopsy samples - forget now exactly what - so its worth getting the biopsy just to make sure that Celiac is all that's going on in there.

nvsmom Community Regular
nvsmom
Posted

Be patient with the diet in the first few weeks. Some of us experience withdrawal and feel more fatigued, headachey and grumpy for a couple of weeks.  Doesn't help when we're stressed because we're trying to figure out what to eat!  LOL  Go through your kitchen and check boullions, canned soups, packaged mixes, nuts, raisens, cereals, soy sauce, teriyaki, barbque sauce, and other condiments for gluten. Also, switch out your butter, peanut butter, mayo, jam and such that could have crumbs in it and contaminate your food. As you know, a crumb is enough to make you sick.

 

I also advise buying yourself a few gluten-free treats like nachos or cupcakes... Sometimes we need those treats in the first few weeks.  ;)

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