Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Question About Anti-Ttg

PersianCeliac

Recommended Posts

PersianCeliac Contributor
PersianCeliac
Posted

Hi everyone, my mother and aunt were recently diagnosed with celiac. My mother has no symptoms except anemia. My mother's tTG was >800 when diagnosed and biopsy showed subtotal atrophy. I was wondering did anyone else have such a high number ? I am afraid that since her numbers are so high it will be difficult for her to bring it down or normalize it. My aunt's number was >500 but done at a different lab so they stop counting at 500 not 800.

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Welcome to the forum! Different labs use difference reference ranges. My celiac panel was done by Quest and my tTG was >100 with positive being >8. So how far over 100 that was is an unknown. 398? 500? 1,000? No clue.

ravenwoodglass Mentor
ravenwoodglass
Posted

Her numbers should come down after she has been on the diet for a bit. Many doctors will recheck levels at 6 months to a year gluten-free. By the way since your Mom was diagnosed that means you should also be tested along with the rest of your family if you haven't been already. Read as much as you can here to help your Mom and keep her safe and ask any other questions you need to.

PersianCeliac Contributor
PersianCeliac
Posted
  • Author

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

It is my understanding that the IgA is quite specific to celiac. IMHO with your family history you should go gluten free and then retest and see if the IgA levels go down.

sa1937 Community Regular
sa1937
Posted

Thank you for your responses. As soon as I found out its hereditary, I got tested. My results are confusing my ttg and EmA are both negative also anti-gliadin IGg negative only anti-gliadin IgA is positive and that is not specific to celiac. I guess maybe I have some allergy to gluten but not celiac yet. Sylvia I was wondering did your number come down for ttg ? And if yes how long did it take ?

Knowing what I know now, I would have asked to be retested at 6 months and a year. For me I think I was 9 months or so into the diet before I was retested.

While my EMA was positive at diagnosis, it was negative when retested. My tTG had gone from >100 to 10, which according to Quest was still positive (>8 is positive). Since I was compliant to the diet, I was totally bummed when I met with my GI in April a year ago. He was not concerned because the numbers had fallen dramatically and we had no idea how high they really were as Quest only tested to 100. Right now I have a lab slip to test the tTG and EMA again and have a follow-up appointment on June 7. Now to get to the lab...

If my tTG is still positive, I plan to ask for more testing as I know other AI diseases can also affect tTG levels.

PersianCeliac Contributor
PersianCeliac
Posted
  • Author

Knowing what I know now, I would have asked to be retested at 6 months and a year. For me I think I was 9 months or so into the diet before I was retested.

While my EMA was positive at diagnosis, it was negative when retested. My tTG had gone from >100 to 10, which according to Quest was still positive (>8 is positive). Since I was compliant to the diet, I was totally bummed when I met with my GI in April a year ago. He was not concerned because the numbers had fallen dramatically and we had no idea how high they really were as Quest only tested to 100. Right now I have a lab slip to test the tTG and EMA again and have a follow-up appointment on June 7. Now to get to the lab...

If my tTG is still positive, I plan to ask for more testing as I know other AI diseases can also affect tTG levels.

Sylvia I hope your tests turn out normal, it is great that u responded so well. I was wondering what was the stage of your celiac at diagnosis ? Mild, subtotal or total atrophy ?

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

Celiac.com Sponsor (A8-M):


sa1937 Community Regular
sa1937
Posted

Sylvia I hope your tests turn out normal, it is great that u responded so well. I was wondering what was the stage of your celiac at diagnosis ? Mild, subtotal or total atrophy ?

Thanks, I do, too! My biopsy report said I had villous atrophy but it didn't define it according to the Marsh scale, which I've seen referred to on here. So I really don't know.

Skylark Collaborator
Skylark
Posted

It is my understanding that the IgA is quite specific to celiac. IMHO with your family history you should go gluten free and then retest and see if the IgA levels go down.

I have a different understanding? Usually these days gliadin means deamidated gliadin and I'm pretty sure the IgG is more specific than IgA with the deamidated? The old anti-gliadin IgA was not sensitive at all but pretty specific but I don't know that anyone runs it anymore. I think we did have a couple people with deamidated IgA and positive biopsies.

Whatever it is, having a positive on any of the gliadin style blood tests means you will probably feel better off gluten!

GladGirl Rookie
GladGirl
Posted

My bloodwork was done through the office of a hemotologist and his lab. My IGA was positive big time! Because of my liver biopsy and the bloodwork they did not feel it necessary at this time for me to have another invasive procedure. My liver enzymes are hopefully showing diminished in this next bloodwork. I am however, going to seek a gastro Dr. I have heard of who specializes in celiac disease. I know the tests for my vitamin/mineral status is necessary at this point, so will be taking that step next.

The bloodwork as I understand it for testing is not always "conclusive", so it seems that the genetic testing is another way to go. I am thinking in this whole scenario, that one day they will probably "type" this disease as they have so many others. With all the varying symptomology out there, it would seem that as more clinical studies are performed, that may be the way this specialty will go. Could be helpful for so many out there. Just a thought on my part.:)

Archived

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

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


  • Member Statistics

    • Total Members
      131,176
    • Most Online (within 30 mins)
      7,748
    Ceekay
    Newest Member
    Ceekay
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...