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I'm about to have a biopsy.....what were other peoples TTG IGA's prior to a biopsy....? Mine is above 300..... From what I've read it seems likely I've got celiac disease....what wee other peoples TTG IGA's?

Many many thanks

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My numbers were above what the blood tests could count. I decided to have the endo and a colonoscopy. I wanted to make sure there wasn't anything else wrong and get a feel for how bad the damage was.

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Same, the normal range was 0-7 and mine were above 128, which is where the test counted to. Now down to 22 after three months gluten free. For a variety of reasons I didn't have the biopsy - I decided to go gluten-free after the blood tests and monitor my symptoms and antibody level. Seems conclusive to me and my doctor was happy to make the diagnosis just on the basis of the blood test. Good luck with your biopsy!

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My blood test results were off the charts. I got the endoscopy which confirmed Celiac. It took me a year and a half to bring my antibodies down to the normal range.

 

Good luck!

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Thanks all. Anyone else know what their TTG IGA levels were before diagnosis?

I'm been entirely exhausted......and had absolutely no appetite at all some days. Anyone else present like that? Since my blood tests and while I'm waiting for my biopsy I've kept a food diary and I've noticed lots of tummy symptoms..which I'd not noticed as I'm so busy......

Anyone who has had a biopsy...is there visible damage when they do the biopsy which they might be able to tell me at the time of the biopsy which is then confirmed by the biopsy results...or will I def have to just wait for results to find out.....

Thanks all

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My lab's range was 0-20 and I believe my result was >200; I don't know the actual number.  I never did the biopsy so I can't personally comment on your question about visible damage during an endoscopy, but I think that usually all that is seen is inflammation - a biopsy is usually needed to see the damage.

 

Fatigue and appetite changes are often due to celiac - fatigue is especially common. Hang in there; not much longer now! :)

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My lab considered anything over 11 to be positive and mine was only 13.  However, when I got the biopsy the doctor could tell just by looking at the lining of the small intestine that I had Celiac.  I still have the picture on my fridge.  The surface is all bumpy... like rolling hills.  It's supposed to be completely smooth looking.  She sent the biopsies in to confirm and they showed moderate to severe villi damage.  And I didn't even have any symptoms before getting tested - I only requested the test because Celiac runs in my family.

 

I've only been gluten-free for just over 4 months.  When I hit the 6 month mark they'll redo my bloodwork to make sure my tissue number came down.

 

Good luck with the biopsy... it's actually a very simple procedure and doesn't take long at all.

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My blood tests showed that I was mildly positive. My endo revealed nothing significant. My biopsy results were moderate to severe damage. My main symptom was anemia -- no intestinal issues until I consumed massive amounts of gluten between tests.

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My blood tests showed that I was mildly positive. My endo revealed nothing significant. My biopsy results were moderate to severe damage. My main symptom was anemia -- no intestinal issues until I consumed massive amounts of gluten between tests.

Thank you everyone for all of that. Much appreciated......

Here diagnosis is based on biopsy not only bloods and at the moment I've not seen a single doctor about coeliac.....as based on the extremelych go TTG IGA I've been sent for a biopsy and bypassed seeing a consultant......I'm told I'll see one when my results are back....so I'm completely in the dark in every perspective.....except for knowing I've got a very high TTG IGA after beicomming really unwell. I'm really hoping the person doing the biopsy will at least be able to answer a couple of basic questions...as I really want to stop gluten straight after the biopsy and not wait to see a consultant....as I'm sick of feeling so poorly and exhausted.....

Anyway...could be worse!!

Did anyone else have other odd blood results? All this came about because I lost so much weight and was so exhausted that I had blood tests. They came back with quite a few low results so needed to be urgently repeated...at which point they also added in the TTG IGA one....

So I had abnormally low platelets (and bruising), very low neutrophils and also my overall white blood cell count a as also very low...all low results were below the 'normal ranges' for each element. Has anyone else presented like this?

Thank you in advance.......

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Ooh where are you for that to happen? Part of the reason I decided against having a biopsy was the three month wait to see a consultant, who would then arrange a biopsy (another wait) - so either four more months eating gluten, or two months off and then a two month challenge. Ew! Sounds good that they've sent you straight for a biopsy - hopefully that will give you more information to go on. As I understand it, after the biopsy you will already have had all the testing (bloods and internal testing) that requires you to consume gluten so perhaps you can stop after the biopsy whether you see a consultant or not? Am I right, more experienced coeliac-ers?!

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Thank you everyone for all of that. Much appreciated......

Here diagnosis is based on biopsy not only bloods and at the moment I've not seen a single doctor about coeliac.....as based on the extremelych go TTG IGA I've been sent for a biopsy and bypassed seeing a consultant......I'm told I'll see one when my results are back....so I'm completely in the dark in every perspective.....except for knowing I've got a very high TTG IGA after beicomming really unwell. I'm really hoping the person doing the biopsy will at least be able to answer a couple of basic questions...as I really want to stop gluten straight after the biopsy and not wait to see a consultant....as I'm sick of feeling so poorly and exhausted.....

Anyway...could be worse!!

Did anyone else have other odd blood results? All this came about because I lost so much weight and was so exhausted that I had blood tests. They came back with quite a few low results so needed to be urgently repeated...at which point they also added in the TTG IGA one....

So I had abnormally low platelets (and bruising), very low neutrophils and also my overall white blood cell count a as also very low...all low results were below the 'normal ranges' for each element. Has anyone else presented like this?

Thank you in advance.......

 

Yep. After the biopsy there is no need to keep eating gluten. Go gluten-free as soon as you can. And if your biopsy comes back negative, which does happen and not that infrequently despite what a doctor may claim, you still have a crazy high positive tTG IgA tests so you KNOW that you have celiac disease. Occassionally a false positive ttG IgA can happen but it is ALWAYS a mildly elevated result, and not 15 times the normal. In cases of false negatives, the result is usually caused by diabetes, thyroiditis, chronic liver disease, colitis, crohns, or a serious infection - a false positive is not a benign thing.

 

Keep in mind that when some people go gluten-free they experience a withdrawal after a few days which can last a few weeks. Headaches, fatigue, moodiness, and stomach issues can show up. Just remind yourself that it's temporary if you find yourself in that situation.

 

About the low platelets, people with thrombocytopenia often have celiac disease. Sometimes the platelet count comes up on it's own, but other times it can be a life long battle which can require meds, steroids or surgery - it really varies.

 

I had ITP (idiopathic thrombocytopenia purpura) when I was a young adult, decades before I was diagnosed with celiac disease but I know I've had it since babyhood. Mine was a fairly severe case where platelets got down to 2000 (should be over 150K) - doctors were telling me not to cough or sneeze too hard at that point. LOL Meds and setroids weren't enough for me so I eventually needed my spleen removed. (The spleen kills off anything that whiteblood cells have targeted, and in autoimmune thrombocytopenia, it is the platelets that are targeted.)  I was one of the lucky ones who this procedure works for.  :)

 

Because your WBC are low too, I doubt your thrombocytopenia will get too bad. Hopefully both will improve on the gluten-free diet. Definitely keep an eye on it.

 

This site has useful info on platelet disorders. There is a discussion board that is helpful too. Hopefully your low platelets and wbc won't be an issue for long.  http://www.pdsa.org/

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Oh, I forgot to add that you should be checked for anemia. When your platelets are low, you don't stop bleeding well and menstration can be very heavy. Plus many celiacs are low in ferritin, iron, and B12 which can also lead to anemia.

 

Best wishes.

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Oh, I forgot to add that you should be checked for anemia. When your platelets are low, you don't stop bleeding well and menstration can be very heavy. Plus many celiacs are low in ferritin, iron, and B12 which can also lead to anemia.

 

Best wishes.

Thanks again such all of you..........the information and personal experiences are fascinating ...ESP considering. I've yet to see a doctor, I'm in England and it seems systems are very different...;-)

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I would get random bruising so I thought I was anemic, but when I had nutrient testing done, I turned out to be Vitamin K deficient and my iron was just fine.  I'd add that to the list of things to be checked since that deficiency can cause bruising.  good luck!!

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