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9yr Old Son's Bloodwork Still Positive After 1 Yr

GFM

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GFM Apprentice
GFM
Posted

My 9yr old son was diagnosed a little over a year ago with Celiac. He has been gluten free since April 2007. I'm not an expert on the testing so I'll try my best to describe his results (Endomysial Antibody IgG+IgA was 1 in 20,480 pre diagnosis, 1 in 640 after 3 months gluten free, 1 in 320 after 7 months gluten free, 1 in 160 just recently after 13 months gluten free). He needs to be 1 in 2.5 in order to test negative, and I thought for sure he would be by now.

His doctor thinks that he may be getting hidden gluten from somewhere, but I can't figure out how. Our house is gluten free except for a loaf of bread and some snacks for my other son (which is kept in a separate area). I constantly read labels, call companies, and make all of our meals at home gluten free. We rarely eat out. I pack all of his school lunches and snacks. I trust my son when he says he does not share food or "cheat". He's very conscientious about being gluten free and certainly does not like having frequent blood tests that will stay frequent as long as he tests positive. I've checked the shampoo (Suave) and toothpaste (Crest). By the way, I have also gone gluten free with him and wash my hands before I touch anything that he will eat.

The doctor originally said that it could take a year after going gluten free for bloodwork to become negative. Has anyone experienced this taking longer than a year? It is encouraging that my son's numbers are still coming down, he no longer has stomach aches, and his growth is improving.

We were told to call the dietician who has a lot of experience working with Celiac patients. After asking me some questions, she couldn't identify any potential problems and said to continue as we are and maybe it's just taking him longer to heal. However, if anyone has any ideas, I would appreciate them since a do nothing approach doesn't sit well with me.

I can't think of anything different diet-wise from when his results dropped dramatically at the start of going gluten free. If he truly is still getting gluten then I would think it would be from something he gets on a regular basis (Singulair, Scooby Doo vitamins).

Thanks for reading such a long post and for any suggestions.

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aikiducky Apprentice
aikiducky
Posted

You know I agree with the dietitian. Clearly the antibodies have been dropping and continue to drop, I'd expect that if he kept getting gluten that they wouldn't keep getting lower or would even get higher again. So I really think it's a question of time.

I think generally both patients and doctors underestimate the time it really takes to heal from celiac damage...

Pauliina

GFM Apprentice
GFM
Posted
  • Author
  aikiducky said:
You know I agree with the dietitian. Clearly the antibodies have been dropping and continue to drop, I'd expect that if he kept getting gluten that they wouldn't keep getting lower or would even get higher again. So I really think it's a question of time.

I think generally both patients and doctors underestimate the time it really takes to heal from celiac damage...

Pauliina

Thanks Pauliina. We'll keep at it. I think waiting is sometimes the hardest part.

aikiducky Apprentice
aikiducky
Posted

Ain't that the truth... :)

Pauliina

3,5 years gluten free, and couldn't have imagined the difference even a year ago...

  • 1 month later...
Jim K. Hale Newbie
Jim K. Hale
Posted
  GFM said:
Thanks Pauliina. We'll keep at it. I think waiting is sometimes the hardest part.

Most definitely. It also depends on the amount of damage that was done before going on the gluten-free diet too. If his biopsy results were a Marsh III (showing total blunting), then it probably would take much longer to heal. The numbers are going down though ... that's good. My son is 9 as well, and his numbers (and mine) have been good since we went on a gluten-free diet in 2006, but it took about 6 months. And my IgA anti-gliadin antibodies are never right, but I KNOW I'm gluten-free. Anyway ...

I know that the peer temptations can be high, and even though he's not on taking in gluten, it's hard for kids to be able to say to other kids why they can't and why it doesn't make them "Different". I think you're in the Columbus area, so ... if he wanted to talk to my son about it, I'd be willing to arrange that. My son is living quite happily with it, as am I.

If you want to email me, my email is ilikecitrus @ gmail.com. I've got a bunch of info that I can suggest reading, and I have lots of recipe info and such as well.

oceangirl Collaborator
oceangirl
Posted

Hi.

I've been gluten-free for three years and my TTg JUST got into the normal range. I NEVER eat out, eat only whole foods I make myself and have a gluten-free house! I think for some it takes awhile. Now I am trying to ignore being tested for a time and check in on it in 6 months to a year just to see...

Good luck to you and your son. Keep the vigilance, though!

lisa

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