Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Not Sure Where Gluten Is Coming From

GFM

Recommended Posts

GFM Apprentice
GFM
Posted

My son's ttg was elevated at his last check-up. His doctor suspects he is getting gluten from somewhere. I keep a diary of everything he eats, and am desperately trying to figure out where the gluten is coming from. I'm convinced it's a cross-contamination issue. After looking at what he ate a lot of in the month prior to his test, I noticed he was on a Leapin Lemur kick. Has anyone had problems with this cereal? Or, better yet, does anyone eat Leapin Lemurs on a regular basis (as well as the other gluten free Envirokidz cereals) and test negative on follow-up ttg tests?

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

Celiac.com Sponsor (A8-M):


JillianLindsay Enthusiast
JillianLindsay
Posted

Hmm... I eat EnviroKidz cereal and cereal bars all the time! I have my first follow-up soon with my first post-diet ttg test. I'll let you know what my results are :)

Jillian

My son's ttg was elevated at his last check-up. His doctor suspects he is getting gluten from somewhere. I keep a diary of everything he eats, and am desperately trying to figure out where the gluten is coming from. I'm convinced it's a cross-contamination issue. After looking at what he ate a lot of in the month prior to his test, I noticed he was on a Leapin Lemur kick. Has anyone had problems with this cereal? Or, better yet, does anyone eat Leapin Lemurs on a regular basis (as well as the other gluten free Envirokidz cereals) and test negative on follow-up ttg tests?
taweavmo3 Enthusiast
taweavmo3
Posted

I've always been a little bit leary of Envirokidz, just b/c they do make other products with wheat. Once in a while might be okay, but every day that little bit might start to add up. That happens to us alot with other products that are cc....once in a blue moon is fine, a few times a week equals trouble!

Jeremiah Apprentice
Jeremiah
Posted

Leapin Lemur kick... I don't think this one claims to be gluten free, if memory serves me correctly.

brigala Explorer
brigala
Posted

Yes, Leapin Lemurs is supposed to be gluten-free.

I didn't like it very much, though. I like the Panda Puffs and the Koala Krisps, but the Leapin Lemurs was bleh. The cereal. Now the Leapin Lemurs BARS kick a$$.

I don't eat any of them very often, though.

Lynayah Enthusiast
Lynayah
Posted

Look at all the sources of possible gluten. For example, does the soap in the school washroom have gluten-free soap, and if not, might he wash his hands and later put his hands in his mouth?

GFM Apprentice
GFM
Posted
  • Author

Thanks for all the responses and suggestions. Our house went gluten free in April 2007 when my son (who is now 10) was diagnosed. He's had repeated bloodwork every 6 months or so, and sometimes even after only 3 months. He was finally negative for the first and only time in March 2009. We have a spreadsheet with all the foods that he eats and after some analysis of what he is eating a lot of in the month before each test and comparing each time frame, we suspected the Leapin Lemurs so that's what prompted the question. Ironically, just before he tested negative, he was on a Panda Puff kick. Also, no changes to the soap at school.

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

Celiac.com Sponsor (A8-M):


Ahorsesoul Enthusiast
Ahorsesoul
Posted

You may want to go watch him at school a few days. Is he getting a little treat from a friend at lunch (of course he is not going to tell you)? Are they playing with Playdoh at school or at a friends house? What about his toothpaste?

It's hard to track it down as an adult. With kids it's even harder. Let us know what you find out.

  • 3 weeks later...
GFM Apprentice
GFM
Posted
  • Author

I appreciate the comments, and I know I may come off as sounding like a mom in denial, but I do not believe that he's taking treats from friends and cheating on his diet. He wants his tests to come back negative as much as anyone. Although good ideas, he has no interest in Playdoh, and he was using the same toothpaste (same ingredients) as when he tested negative. So, we'll continue trying to figure this out.

Gemini Experienced
Gemini
Posted
I appreciate the comments, and I know I may come off as sounding like a mom in denial, but I do not believe that he's taking treats from friends and cheating on his diet. He wants his tests to come back negative as much as anyone. Although good ideas, he has no interest in Playdoh, and he was using the same toothpaste (same ingredients) as when he tested negative. So, we'll continue trying to figure this out.

Just my 2 cents worth here......for the millionth time since I started posting to this forum, the tTg is a lousy test to use for dietary compliance and doctors are still making this huge mistake. I just don't understand what they don't get! :huh: A primer.......tTg can also elevate in the presence of other autoimmune diseases, consistent and common with Celiac Disease. So, if they did not also run the AGA IgA and AGA IgG tests, which actually tests for the presence of the gliadin antibody in his blood, the doctor has no way of knowing whether this is a dietary compliance issue or another disease is present. Hashi's thyroid disease is very, very common with Celiac and that will elevate tTg and keep it elevated, if not treated. So, the doc needs to do these other 2 tests or the tTg is useless.

I hate to see people who are very careful drive themselves nuts when it may not be coming from his diet at all.

Second, soap is not an issue for hand washing as you rinse your hands and remove the soap. Unless he is very young and does not rinse his hands well, and then puts his hands into his mouth on a regular basis, I wouldn't obsess about that. If it's something that is going to stay on the hands, like lotion, that's a different story.

You sound like you have done a great job at tracking his recovery so I would ask the doc for the other 2 tests, in conjunction with the tTg, for a total picture of what's going on. If he thinks the tTg is enough, then you have a problem because it isn't. The other two I mentioned are for dietary compliance, not the tTg. That tests for damage level or if other diseases may be present. I have 4 autoimmune diseases total so am well versed with all the testing aspects. It also took me awhile to find a doctor who was easy to train on these issues! ;):P

dilettantesteph Collaborator
dilettantesteph
Posted

I think that my son and I have been glutened by envirokidz. It was a chocolate rice one, I think, that was labelled gluten free. I am very sensitive though.

celiac-mommy Collaborator
celiac-mommy
Posted

Envirokidz is the only gluten-free cereal I buy for my kids (it's the cheapest one I can find ;) ) and my dd is so sensitive, she reacts immediately and violently (won't go into details). Neither kid has ever had an issue with any of their stuff that is labeled gluten-free.

  • 2 weeks later...
GFM Apprentice
GFM
Posted
  • Author

All great ideas! Thanks everyone for your responses. I appreciate the help.

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. Scott Adams
      - Scott Adams replied to barb simkin's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      celiac, chocolate and alcohol

      Given your strong reactions it would be wise not to eat things offered to you without reading the ingredient labels. It's possible there was indeed gluten or some allergen in the chocolates--barley malt is a common ingredient in some chocolates.
    2. trents
      - trents replied to SEQ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Newbie with Celiac / NCGS symptoms

      Yes, an IgG panel is the logical next step. However, you would still need to be consuming normal amounts of gluten to ensure valid IgG testing. Since it has only been a week that you have been off gluten, there is still likely time to restore antibodies to detectable levels before the blood draw. IgG antibody tests are not quite as specific for celiac disease...
    3. SEQ
      - SEQ replied to SEQ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Newbie with Celiac / NCGS symptoms

      Thanks @trents. I have exchanged some messages with the clinic today, and they are saying that the reason there is no result for the total IgA levels is because I don't have any. Apparently a negative result means that it does not appear as a line on the results at all. I am not sure I buy this, but it is what they are telling me. I am leaning more towards...
    4. trents
      - trents replied to SEQ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Newbie with Celiac / NCGS symptoms

      IGA deficiency is a lot more common than we used to think but I can't give you a number. Doctors used to believe it only happened in children but we know better now. Every doctor should order, at the very minimum, total IGA and tTG-IGA. It may be true that you don't have to worry as much about cross contamination if you have NCGS but that is not a given. ...
    5. SEQ
      - SEQ posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Newbie with Celiac / NCGS symptoms

      Hello everyone, first time poster here looking for a little advice on my situation. I (32 year old male) have been experiencing a lot of different health issues for a long time now - I can't pinpoint when anything in particular started, but we are talking a minimum of 5 years for most symptoms, some much longer. I have been ploughing ahead for a long...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,334
    • Most Online (within 30 mins)
      7,748
    DME
    Newest Member
    DME
    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

    • Scott Adams
      Newbie with Celiac / NCGS symptoms

      By Scott Adams · Posted

      I would pressure the lab to do the IgA control test for free so that you won't write a poor review about their testing services. You could get this done at any time, whether or not you are gluten-free, however, the celiac disease Tissue Transglutaminase tTG-IgA test must be done after you've been eating lots of gluten for around 6 weeks. This way you could salvage the results of your tTG-IgA test, as long as you were eating lots of gluten beforehand.
    • Scott Adams
      celiac, chocolate and alcohol

      By Scott Adams · Posted

      Given your strong reactions it would be wise not to eat things offered to you without reading the ingredient labels. It's possible there was indeed gluten or some allergen in the chocolates--barley malt is a common ingredient in some chocolates.
    • trents
      Newbie with Celiac / NCGS symptoms

      By trents · Posted

      Yes, an IgG panel is the logical next step. However, you would still need to be consuming normal amounts of gluten to ensure valid IgG testing. Since it has only been a week that you have been off gluten, there is still likely time to restore antibodies to detectable levels before the blood draw. IgG antibody tests are not quite as specific for celiac disease as are the IGA tests but they are certainly valuable in the case of IGA deficiency. They also seem to have a little more "staying power" in the sense of detecting celiac disease in the case of those who may have already started a gluten-free diet as long as they haven't been on it for an extended period of time. But don't rely on that. Get back on gluten if you can possibly endure it if you intend to go forward with IgG testing. This might be helpful:   
    • SEQ
      Newbie with Celiac / NCGS symptoms

      By SEQ · Posted

      Thanks @trents. I have exchanged some messages with the clinic today, and they are saying that the reason there is no result for the total IgA levels is because I don't have any. Apparently a negative result means that it does not appear as a line on the results at all. I am not sure I buy this, but it is what they are telling me. I am leaning more towards the theory that they didn't test it in the first place. But, working on the basis that the test result was zero, I asked what the next steps would be, given that I apparently have no IgA antibodies. They have asked if I now want to have a tTG-IgG and a DGP-IgG test. Is this really the next step if I have no total IgA?
    • trents
      Newbie with Celiac / NCGS symptoms

      By trents · Posted

      IGA deficiency is a lot more common than we used to think but I can't give you a number. Doctors used to believe it only happened in children but we know better now. Every doctor should order, at the very minimum, total IGA and tTG-IGA. It may be true that you don't have to worry as much about cross contamination if you have NCGS but that is not a given. By the way, welcome to the forum, @SEQ!
×
×
  • Create New...