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

Ttg Levels

khockman

Recommended Posts

khockman Newbie
khockman
Posted

My baby is 21 months old. She was tested three months ago and her ttg level came back as greater than 100. We have been gluten-free (as far as I know) since then. She was retested last week and I was so hopeful that her level would be down, but it wasn't. It was still greater than 100. The test doesn't read anything above 100, so it appears as though nothing has changed. Her symptoms have improved. She had lost 3 pounds and she gained them back since going gluten free. Does anyone have any thoughts on this? I am worried sick. How long did it take your child's ttg level to go down? The doctor says we will give it three more months and check again.

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

Celiac.com Sponsor (A8-M):


DingoGirl Enthusiast
DingoGirl
Posted

That is disconcerting......I don't really have an answer, either. My level was also greater than 100 at time of diagnosis, but at the six-month mark, was down to 17. Have you been quite strict and careful - no hidden glutens - with her diet?

Hopefully others will have some answers......but it's a very good sign that she's gained weight. Hang in there. :)

Ursa Major Collaborator
Ursa Major
Posted

If the test doesn't show anything above 100, how do you know it wasn't 500 before, and now it is down to 120? You obviously only know it was over 100 and still is, but you really can't tell if there is an improvement.

Your daughter seems to be doing better and is gaining weight. That sounds like the gluten-free diet is working. Does she still eat/drink dairy? That could be the problem, as could soy (if you give her soy). Eliminate dairy (and soy) to see if it makes a difference.

I wouldn't be too worried yet, especially because her symptoms are improving, and she has regained the weight she had lost.

khockman Newbie
khockman
Posted
  • Author
If the test doesn't show anything above 100, how do you know it wasn't 500 before, and now it is down to 120? You obviously only know it was over 100 and still is, but you really can't tell if there is an improvement.

Your daughter seems to be doing better and is gaining weight. That sounds like the gluten-free diet is working. Does she still eat/drink dairy? That could be the problem, as could soy (if you give her soy). Eliminate dairy (and soy) to see if it makes a difference.

I wouldn't be too worried yet, especially because her symptoms are improving, and she has regained the weight she had lost.

Thank you both so much for your replies. I was very happy about her improvement before the follow-up appointment. I do give her soy milk and she gets dairy from yogurt and cheese. It's such a challenge to get her to eat period and these three things are what she wants mostly. I can't really bear the thought of having to eliminate soy and dairy as well as gluten.

I had thought the same thing about how her ttg level could've been like 500 and now is only 200 or so...I know that God has her in the palm of His hand. It is just so hard for me to not worry about her b/c she's so little and fragile. I am going to be more diligent about her diet and try to give her nothing processed or from a resturant.

DingoGirl Enthusiast
DingoGirl
Posted

You know, Ursa's right, we have NO idea what the ttg level actually was before testing.......

And the fact she's gaining weight IS a good sign! :)

Let us know how things progress.

WendyG Explorer
WendyG
Posted

Hi, I had mine tested in Feb they were 84. I was just retested last week and mine are down to 4.

Good luck, be sure to check supplements if she is taking any.

wendy

Mickide Apprentice
Mickide
Posted
My baby is 21 months old. She was tested three months ago and her ttg level came back as greater than 100. We have been gluten-free (as far as I know) since then. She was retested last week and I was so hopeful that her level would be down, but it wasn't. It was still greater than 100. The test doesn't read anything above 100, so it appears as though nothing has changed. Her symptoms have improved. She had lost 3 pounds and she gained them back since going gluten free. Does anyone have any thoughts on this? I am worried sick. How long did it take your child's ttg level to go down? The doctor says we will give it three more months and check again.

Well the weight gain is good! Maybe double check and triple check that she is not getting cross contamination. Are you gluten-free too? Or your house? I found myself feeling better symptom wise and weight gain wise but still getting glutened.. finally figured out it was cross contamination including kissing my husband! I agree maybe dairy could be and issue or possibly even some gluten-free grains, I don't do well with some of the gluten-free mixes, pancakes etc.. Hang in there you are doing great! And her symptoms have improved!

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

Celiac.com Sponsor (A8-M):


khockman Newbie
khockman
Posted
  • Author

I am bumping this up hoping more of you will please share with me what your child's tTG level was at diagnosis, and how much it dropped in how long. Please!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.