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

Has Anyone Ever Had Negative Ttg Iga And Positive Ema?

MsCurious

Recommended Posts

MsCurious Enthusiast
MsCurious
Posted

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! :blink::P 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! :P

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

Celiac.com Sponsor (A8-M):


MsCurious Enthusiast
MsCurious
Posted
  • Author

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 Contributor
cassP
Posted

LOL MsCurious- u r so thorough :lol:

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 :blink:

MsCurious Enthusiast
MsCurious
Posted
  • Author

LOL MsCurious- u r so thorough :lol:

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 :blink:

Hehee... yeah thorough after going through this for DECADES with no answer! :P 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. :blink:

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

  • 2 years later...
freeme808 Apprentice
freeme808
Posted

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 Enthusiast
MsCurious
Posted
  • Author

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 Apprentice
freeme808
Posted

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.  :unsure:

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748
    Michelle C.
    Newest Member
    Michelle C.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Is this celiac?

      By Wheatwacked · Posted

      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
×
×
  • 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.