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

Positive Tests Without Symptoms


Sheesh-

Recommended Posts

Sheesh- Newbie

Hello everyone. :)

I'm having a little crisis about what to do about my children. After having the last kid I developed gluten sensitivity. It only took me a couple of months to figure it out and then I did a trial gluten-free diet. Symptoms resolved. I had blood tests that were normal. Because I like answers I tested through Enterolab. I was gluten-free 5-6 weeks when I tested and my levels were all in the teens (they consider 10+ to be reactive to gluten).

Then I tested my 3 kids (ages 5, 3, and 9 months). They all have anti-gluten levels between 16-30. No one had any fat absorption problems. One child had a 47 for soy and the others had low teens. But here's what's got me confused: The baby had anti-casein antibodies *and he's never had cow milk* - exclusively breastfed for the first 5 months, then he has had some fruits and veggies, but we are a vegan family. No dairy. Ever. My older 2 kids also had anti-casein antibodies but it is possible they have at some point had a processed food with tiny amounts when they were away from me. (For example, someone may have given them a granola bar not realizing that it had some dairy in it. I can't be with them all the time.) Can anyone take a shot at explaining that? It made me question the tests.

And here's the real reason I'm posting - I'm having a hard time convincing myself that the kids (already vegan and that's not going to change) really need to be off gluten and also possibly soy too. Talk to me, please.


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



Celiac.com Sponsor (A8-M):



hathor Contributor

That is a tough one. Is it possible you had something with casein or a caseinate as an added ingredient? It wouldn't necessarily show up as dairy. I know a number of soy cheeses have casein in them; rice cheeses too. I recently saw a study about an antigen making its way into breast milk, in this case gliadin.

Open Original Shared Link

How long have you been dairy free? Have you been completely free of casein for a long period? I have been largely casein-free for years. A few times I caught the casein in nondairy cheese and stopped it. Maybe a couple times I saw parmesan added to a restaurant dish (not in the description) and didn't bother sending it back. (Are you sure no butter or the like made it into any restaurant dishes?) The only time I deliberately ate casein last year was at Thanksgiving when I ate a slice of cheesecake because a young relative (newly vegetarian) had made it and I wanted to be supportive and nice. (I got sick for a week ...) Anyway, this amount of casein was enough to give me a fairly substantial anticasein antibody score.

I don't know how long it takes for this to clear out of one's body.

Another possibility, if you are sure you haven't had any deliberately added traces of casein, is that milk has cross-contaminated something you have eaten (or the baby ate). I see warning labels all the time of products produced in the same facility or on the same equipment as milk (and other things), or that may contain "traces" of milk. These warning labels are voluntary. Companies only have to list deliberate ingredients. You might have run across items with traces of casein that was not disclosed.

A third possibility is if you or your baby have taken any supplements or medicines that you didn't confirm were casein-free. This doesn't have to be labeled. Also, any care items you used on the baby, anything used to wash any item he might put in his mouth, etc. would have to be casein-free to be completely casein-free. Casein can pop up in a number of places. I know Elmer's glue at least initially was made from it (hence the cow on the package).

The last possibility is that the tests are off. I don't know if there is any test that is 100% accurate and sensitive (that is, no false positives and no false negatives). Dr. Fine hasn't published his research and no one has tried to replicate his results. But I wouldn't expect three false positives. It seems more likely that there is some sort of casein you aren't aware of.

Of course, you can always email Enterolab and ask. Their answer might be better than my speculations :rolleyes:

I guess how you proceed is up to you. You could not change your children's diets and be alert to any symptoms, then retest in a year and see what has happened to the antibody levels. Or you could eliminate the items from their diets and see how they fare. You may discover that there were symptoms, but subtle ones. I know I was surprised by my antisoy antibody level. Then I tried going off soy and found I did better. I'm still unsure about yeast. There was level was 11. I went off and saw no difference, added it back in and still saw no difference. But then I just found out that I should have removed wine and gluten-free beer from my diet. So I am beginning anew to see if a truly yeast-free diet will do anything, even given my score near the cutoff.

What they say is that any score at 10 or above is a concern. It isn't a bigger problem if your score is higher. The only test where the absolute level is significant is the malabsorption score. I wouldn't draw too much significance to the absence of malabsorption if I were you. Your kids are young. It could be you are catching this before much damage could take place.

As I said it is up to you. What I would do -- but I'm not you :lol: -- is to follow the Enterolab recommendations and see what happens. If there is a positive result in any way, and this could be something other than gastro symptoms too, you have an answer. If you see no difference after some months, you could do a challenge with those foods. If there is a sensitivity, one seems to be very reactive if they get any after being free of food for a period of time. If there was no reaction then, I might retest with Enterolab.

I will be interested in seeing what other people say on this subject. I haven't gotten my children tested. But they are in their 20's and are capable of deciding for themselves if they need to get the testing done. Both seem in the peak of health, although they find it difficult to stick to a completely plant-based diet where they are. I don't think either one would want to give up gluten or anything else unless they weren't feeling well and would tend to disregard the result of a nonpeer-reviewed test for that reason.

However, if others had experience in this area, I'll listen :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Me,Sue's topic in Coping with Celiac Disease
      1

      Nausea

    2. - Colleen H posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Stomach burning and neuropathy

    3. - sleuth replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    4. - Scott Adams replied to fatjacksonthecat's topic in Coping with Celiac Disease
      18

      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

    5. - Me,Sue posted a topic in Coping with Celiac Disease
      1

      Nausea


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,837
    • Most Online (within 30 mins)
      7,748

    Juliane
    Newest Member
    Juliane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      I have trouble with nausea. It often starts when I’m anxious about something (home repairs, sick dog) but continues long after the home is repaired or the dog is healthy again. When it happens I eat less and lose weight.  My gastroenterologist suggested ginger or peppermint tea. I don’t know if that will work or not because I haven't had the problem since she suggested it.
    • Colleen H
      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
×
×
  • 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.