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

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

GFM

Recommended Posts

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.

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

Celiac.com Sponsor (A8-M):


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
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
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

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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. 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...
    4. 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...
    5. 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?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748
    Santa Don
    Newest Member
    Santa Don
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • 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?
×
×
  • 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.