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

Strict Gluten Free Diet And Still Elevated Levels


mommysarah713

Recommended Posts

mommysarah713 Rookie

My 4-year-old was diagnosed in early June and it has been a roller coaster. We have her on a very strict gluten free diet, but we keep finding hidden sources, such as stickers and her shampoo and conditioner. For a 4-year-old, its impossible to keep hands and things out of her mouth. So everything she touches is a possible danger it feels like. Well, we just had follow up blood work, almost 6-months later and we're very disappointed, yet not surprised. Although slightly lower, her levels are still very high. I have no idea what else i can do to help my daughter.


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

You can give her time and your patience. Those levels take a long time to come down. If they are coming down, you are making progress. They just don't fall to very low right away. Just focus on her diet like you have been and it will be OK in the end. You're such a good mom to care for her in such a dedicated way. She is doing well.

  • 1 month later...
TerryK Newbie

It took almost 2 years of very strict diet for my daughters blood work to be normal. No one told me it could take awhile so I drove my self insane, cooking food in her own pots/pans, not putting any of her dishes in the dishwasher. Everytime her blood work would come back high I would start logging everything she ate. Her numbers were very high to start & I now believe it just took awhile for her body to adjust.

My 4-year-old was diagnosed in early June and it has been a roller coaster. We have her on a very strict gluten free diet, but we keep finding hidden sources, such as stickers and her shampoo and conditioner. For a 4-year-old, its impossible to keep hands and things out of her mouth. So everything she touches is a possible danger it feels like. Well, we just had follow up blood work, almost 6-months later and we're very disappointed, yet not surprised. Although slightly lower, her levels are still very high. I have no idea what else i can do to help my daughter.

taweavmo3 Enthusiast

It could also be helpful to make a list of the most common things she is eating, and we might be able to tell you if there are any hidden sources of gluten. I know there are plenty of items out there that should be gluten free, but still cause problems.

For my daughter, we have had to cut out alot of processed foods, and go to a more whole foods diet. She's just really sensitive, and little bits of cross contamination add up over time. Frito Lay chips were something we finally had to cut out for example....she does fine with a little every now and then, but not on a regular basis in her lunch like we were doing. So, that might be something to look into if her numbers continue to remain high. Hope that helps, keep doing what you are doing, and you will figure it out!

Archived

This topic is now archived and is closed to further replies.

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

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,864
    • Most Online (within 30 mins)
      7,748

    Jojo3
    Newest Member
    Jojo3
    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
      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
      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
      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
      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
      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.