Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

High Ttg Levels But No Symptoms In 3.5 Year Old
0

4 posts in this topic

Hi all,

I will also post this in the "supersensitive" section, but could use some help brainstorming, my daughter was diagnosed in 2009 (she was 14 months old) and is now 3.5 years old. In that time, her ttg levels have only once come below the highest level (and even then it was only down to 135). The odd part is that she does not seem to have any symptoms since going gluten free. She has normal bowel movements, non vomiting, not complaining of stomach pain, is growing normally, and has "a terrific looking vitamin panel" according to her GI. We have checked all sources of cross contamination at home and school, have a gluten-free house, gluten-free babysitter (when she is here), never eat out and I make all of her foods. They are suggesting she try a no-processed foods diet next, but I'm wondering if any of you have any other ideas. Im willing to do what i need to do, but it is also getting hard to get my picky eater to eat much of anything!! Is she super sensitive without symptoms? Is there something about the test that is less valid in such a young kid? Any ideas are welcome!!!

Thanks for any help!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi all,

I will also post this in the "supersensitive" section, but could use some help brainstorming, my daughter was diagnosed in 2009 (she was 14 months old) and is now 3.5 years old. In that time, her ttg levels have only once come below the highest level (and even then it was only down to 135). The odd part is that she does not seem to have any symptoms since going gluten free. She has normal bowel movements, non vomiting, not complaining of stomach pain, is growing normally, and has "a terrific looking vitamin panel" according to her GI. We have checked all sources of cross contamination at home and school, have a gluten-free house, gluten-free babysitter (when she is here), never eat out and I make all of her foods. They are suggesting she try a no-processed foods diet next, but I'm wondering if any of you have any other ideas. Im willing to do what i need to do, but it is also getting hard to get my picky eater to eat much of anything!! Is she super sensitive without symptoms? Is there something about the test that is less valid in such a young kid? Any ideas are welcome!!!

Thanks for any help!

Which TtG is elevated, IgA or IgG?  Have the doctors considered inflammatory conditions outside of celiac?  Sometimes TtG is reflective of things NOT celiac...it can be elevated in thyroid and liver conditions for example, as well as diseases like Crohn's. 

 

Have you tried eliminating dairy?  Soy? 

 

I would definitely think about going on a GAPS or SCD type diet...dropping processed foods and dropping grains/sugars altogether might be worth a try.

0

Share this post


Link to post
Share on other sites

Thanks for the follow up- both are elevated, but it's the iga he's worried about. Every blood test they screen her thyroid and liver function, we glucose levels for diabetes and they are all normal. Dropping grains is probably the next step, but even the nutritionist and GI seem a bit unsure of what going on given her otherwise healthy presentation!

0

Share this post


Link to post
Share on other sites

Perhaps you or your doctor could contact the Univ of Chicago Celiac center? They like to help docs understand Celiac.

http://www.cureceliacdisease.org/contact-us

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,532
  • Topics

  • Posts

    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined