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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,836
    • Most Online (within 30 mins)
      7,748

    Art Glassman
    Newest Member
    Art Glassman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/      
    • DayaInTheSun
      Interesting you mention MCAS. I have come across mcas before but I wasn’t entirely sure if that’s what it was. When I eat certain food like dairy or soy my face gets so hot and I feel flush and my heart rate shoot’s up. And sometimes my bottom lip swells or I get hives somewhere. This started happening after I had a really bad case of Covid.  Before that I was able to eat all those things (minus gluten) I was diagnosed with celiac way before I had Covid.  Hmm, not sure really. I may look for a different allergist my current one told me to take Zyrtec and gave me an epi pen. 
    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
×
×
  • Create New...