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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.


Kristin Hockman--positive blood test, no biopsy

I am a wife to Steven (negative blood test) and mom to Miriam (positive blood test and biopsy).

Our family has been gluten-free since mid-March '08, and we are currently following the SCD (completely with Miriam, mostly with us).

www.celiacbydesign.blogspot.com

www.rescuedandredeemed.blogspot.com

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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. :)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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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.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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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.


Kristin Hockman--positive blood test, no biopsy

I am a wife to Steven (negative blood test) and mom to Miriam (positive blood test and biopsy).

Our family has been gluten-free since mid-March '08, and we are currently following the SCD (completely with Miriam, mostly with us).

www.celiacbydesign.blogspot.com

www.rescuedandredeemed.blogspot.com

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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.


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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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

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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!


Positive biopsy 7/24/07

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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!


Kristin Hockman--positive blood test, no biopsy

I am a wife to Steven (negative blood test) and mom to Miriam (positive blood test and biopsy).

Our family has been gluten-free since mid-March '08, and we are currently following the SCD (completely with Miriam, mostly with us).

www.celiacbydesign.blogspot.com

www.rescuedandredeemed.blogspot.com

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