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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,781
    • Most Online (within 30 mins)
      7,748
    BH1951
    Newest Member
    BH1951
    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

    • nanny marley
      Manitol and mri

      By nanny marley · Posted

      Hi I've been told I need a MRI on my bowels , I was booked for a colonoscopy, but because of my sever back issues and trapped nerve it can't be done , the nurse told me I will have to have a manitol drink a hour before the scan , I'm just a bit worried has I have issues with sweeteners like even a little,  I get a weird throat and ears and I've read it is a similar substance , not sure if anyone has had one of these scans or could give me some advise on the drink prep thanks in advance 😄
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Ok thank you.  Me either 
    • Colleen H
      Celiac attack confusion and anxiety

      By Colleen H · Posted

      Hi all ! Can a celiac attack be so intense that it causes your entire body to work in reverse? Meaning really bad pain,  neuropathy and muscle,  jaw pain,  the stomach issues , Horrible anxiety and confusion??  I had a Tums and you would think I ate poison. My jaw and stomach did not like it . Not the norm for me. Things that are simple are just out of control. Anyone ever have this happen??  I'm trying to figure out what I ate or did to bring on a celiac like attack. I had an idea before but yesterday I didn't have any gluten unless it was in a medication ?! Any positive suggestions ??  Thank you 
    • Scott Adams
      Gluten free stuff

      By Scott Adams · Posted

      The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
    • trents
      Gluten free stuff

      By trents · Posted

      Tammy, in the food industry, "gluten free" doesn't mean the same thing as "no gluten". As Scott explained, the FDA (Food and Drug Administration) allows food companies to use the "gluten-free" label as long as the product does not contain more than 20 ppm (parts per million) of gluten. This number is based on studies the FDA did years ago to determine the reaction threshold for those with celiac disease. And the 20 ppm figure works for the majority of celiacs. There are those who are more sensitive, however, who still react to that amount. There is another, stricter standard known as "Certified Gluten Free" which was developed by a third party organization known as GFCO which requires not more than 10 ppm of gluten. So, when you see "GFCO" or "Certified Gluten Free" labels on food items you know they are manufactured with a stricter standard concerning gluten content. Having said all that, even though you may read the disclaimer on a food item that says the spices may contain wheat, barley or rye (the gluten grains), you should be able to trust that the amount of gluten the spices may contain is so small it allows the total product to meet the requirements of gluten free or certified gluten free labeling. I hope this helps.
×
×
  • 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.