Has Anyone Ever Had Negative Ttg Iga And Positive Ema?

[MsCurious]

Sorry to pester you all again, but I'm just curious if anyone has actually had the experience of a negative tTG IgA (Tissue Transglutaminase IGA) and then had a positive IgA-EmA (endomysial antibodies)? Thanks! Really curious about that. I have had Positive DQ2.5 genetic marker, oodles of symptoms, negative tTG IgA and still waiting for IgA-EmA... but not sure that's even a possibility at this point.

They did a bunch of allergy tests on me... all negative for the most part. Pretty allergic to birch trees, but I don't plan in ingesting one of those anytimes soon! Other than that, just slight allergic reaction to oak trees and shrimp. So really they can't attribute my symptoms to allergies, unless its something they didn't test.

So, still playing the waiting game, but just curious if anyone has ever had negative tTG IgA and positive EMA. THANKS!

PS: Really looking forward to graduating from the pre-diagnosis portion of the forums... LOL!

[MsCurious]

Been poking around on the forums, because I'm sure somewhere along the line, someone has addressed this question. I found a post by cassP that looks "kind of" like my situation. That gives me a little light ... Thanks cassP ... your previous post just helped me out again.

cassP: "u know (of course i only had a 2 week gluten challenge- not enough)- but my Antigliadin were SOLID negative. and my TTG Iga & Igg were only like an 8 on the 1st test & a 7 on the 2nd (weak positive).. the only part of my test that was a solid positive was the Endomysial Antibody. my docs didnt know what to do with that... they simply said- if i feel better eating gluten free, then i should.

2 years later i ordered the gene test (im double DQ8), and after going gluten free i got DH. so, u see- these test results can be very misleading..

you only got the TTG done. and you've got a DQ2.5, right? sounds like Celiac is not off the table yet."

This waiting is so hard. Still planning on going gluten-free when the tests are DONE...either way... to "test" for myself if its negative. TOo many symptoms not to.

[cassP]

LOL MsCurious- u r so thorough

i was about to reply untill u answered your own question. ya, my ttg was really really weak. if it wasnt for my EMA, i would have probably dismissed it all. i honestly dont think my "gluten challenge" was long enough.. especially since the previous 8 years i was mostly wheat free.

our bodies are so complicated- and this disease is so mysterious. my symptoms have changed thruout the years... and i never even got DH untill after i went gluten free. i had had SEVERE excema in my 20's.. SEVERE i cannot even describe it- and that went away when i went on atkins/bloodtype. (not even 100% gluten free). im sure our levels of antibodies and their locations change a great deal

now, im just blabbing

[MsCurious]

LOL MsCurious- u r so thorough

i was about to reply untill u answered your own question. ya, my ttg was really really weak. if it wasnt for my EMA, i would have probably dismissed it all. i honestly dont think my "gluten challenge" was long enough.. especially since the previous 8 years i was mostly wheat free.

our bodies are so complicated- and this disease is so mysterious. my symptoms have changed thruout the years... and i never even got DH untill after i went gluten free. i had had SEVERE excema in my 20's.. SEVERE i cannot even describe it- and that went away when i went on atkins/bloodtype. (not even 100% gluten free). im sure our levels of antibodies and their locations change a great deal

now, im just blabbing

Hehee... yeah thorough after going through this for DECADES with no answer! I'm so ready to have a result! I wish they would have just done the whole panel instead of a test here a test there, but I suppose they're trying to save coins if they don't have to do them all, I dunno. I've never had eczema but my sister and brother both have it. I also have been anemic, had multiple miscarriages, practically non-existant vitamin D level, all the "fun" tummy troubles... blah blah blah... So, yep, really trying to make sure this time they figure it out! Hope like heck I'm not driving you all bonkers... you've all been so helpful! This waiting game is so hard... but I'm getting to the end of it I hope. I think this EMA is the last thing... unless they decided to go ahead with the biopsy ... but I don't think I'll need it if EmA is positive. If its negative. pffffft.... I'm going gluten-free...at least for a month and then I'll know with or without Doc's. ;P Honestly, without my "thoroughness" ... they would have just said IBS and that would have been the end of that.

And you're NEVER ... babbling! Everything you share helps someone along the way. So... for that I say... "Thank you for babbling!"

[freeme808]

Serious, thank you for babbling! It's so hard working with the doctors, especially if your educated about the disease...they don't seem to like that very much. Haha.

I found you post, because I was thinking about the blood work that I had my doc run. I had to give him the list of tests to run, and the system didn't have a  couple of them! And I guess because my tTG was neg, the lab tech didn't even run the EMA. Ugh, that erks me still! That was several months ago. I know there's good/bad about the enterolab testing, but hey...That showed elevated antibodies, and weakly positive tTG. I also ended up with a wonderful holistic doc who corrected my deficiencies(severely anemic,low vit D, and a couple others). I actually have color in my face now and don't look like a ghost anymore! 

Went gluten-free for a month and a half, felt great. But messed up...been on gluten for two months now. And given that my reaction is even stronger now(assuming the brief period for my antigens to calm down a bit?) I decided to push it a little farther one last time. Endoscopy/colonoscopy to hopefully find out why my intestines are so hard. I wish I was more aggressive back when I had the blood work...to push for these last tests. I would have had my answer already! 

I also know this is an old post, but hey. Thank you!

[MsCurious]

Hi FreeMe808! Thanks for the thanks! Its so gratifying to see any posts...old or new... help somebody else out! I had forgotten about this post ...and all the babbling, but reading it now... a few years later... WOW, I've come a long way....and mostly without doctors help, mostly kicking and screaming my way to my diagnosis. They didn't want to even consider it, and I was right. The doctor looked pretty sheepish when he told me my results of biopsy, etc. Interestingly, he pulled my husband aside when I was in the "recovery" area, and told him ..... she can't have ANY DAIRY EVER! ... Not even a spec of powdered milk in a mix or in a piece of chocolate, etc. And he'd been very firm about that to me, as well. He never did tell me why that was such a biggie ,but I don't touch it with a 10 foot pole, between that and gluten being removed from my diet, and figuring out a few other food allergies that I always suspected but that were never confirmed. Now I'm doing great!  Who knew that when melons made my throat itch and made me hoarse... I was allergic to them. I'm so dumb ... I just always laughed it off and ignored it. Sheesh. The best thing I've learned to do, is to listen to my body. It knows what it wants and likes and what it hates....and it definitely lets me know!   Hope you're doing great too! On a final side note.... I haven't been to the doctor except annual exam...since going Gluten-free Casein-free....and I've never felt better!  Blood tests that were all out of whack are now perfect... It's just amazing.

[freeme808]

Thanks for responding. That's so awesome that your feeling better! I'm look forward to that day too! I agree it's so very important to listen to our bodies...they really have a lot to say!

Did you have a positive biopsy? Im curious as to what they are going to find in there for me.