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

Best Test To Tell?


Offthegrid

Recommended Posts

Offthegrid Explorer

Hi all! I'm new around here. Anyhow, here's the short version ...

Been gluten-free for about 9 months, but have still been having problems sporadically. I assumed I was getting glutened. I now believe that casein is behind it after switching to lactose-free products and still having problems.

Now I have been trying to be casein-free, but it's also an adjustment. I'm actually feeling a LOT better, but noticed I broke out in some acne (which had cleared up 95% being gluten-free after suffering for years. I'm 28).

But something is still getting to me. I'm wondering now if it's soy, or if I just haven't eliminated all casein sources yet. For example, I've been using Blue Diamond soy milk, which is delicious but I just read on here contains soy. And I've been eating Lindt 70% cocao chocolate, which does not have milk ingredients but may from contamination. So either one of those might be the culprit.

*Is* there some sort of medical test that can tell if it's soy or casein? I'm going nuts here.


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



Celiac.com Sponsor (A8-M):



dangervolvo Rookie

To be honest, I think it may be worth while to eliminate both soy and casein until your stomach calms down, and then challenge them to see which it is. Both can be problematic, and you'll save yourself the grief and worry that goes along with trying to ferret out which one is the issue.

I found out I was gluten intolerant 2 months ago via a blood test, and was given a list of many other things I developed a high level of antibodies to as well. I cut out all of those, but continued to have stomach issues. So, even though soy and dairy came up fine for me on the blood test, I decided to cut them out after reading about so many other people struggling with those 2 things while recovering from gluten damage.

So, while you can get a blood test to check for food problems, I don't believe it is always the most accurate way to judge what is going on with your body at that time. I am starting to believe that the best way to judge is to get rid of it and see if things get better, even if it is hard (and this is from a girl who gave up sugar, and yesterday was Halloween!).

Hope that helps, this whole thing is hard and mysterious, but hopefully worthwhile,

-Sarah

hathor Contributor

Enterolab will test for both casein and soy. That is one way to tell for sure. There certainly are plenty of folks who react to gluten, casein & soy.

I was surprised by my soy result. I never noticed a problem, at least gastro-wise. But I did have a lot of soy, given that I was following a plant-based diet 99.5% of the time I would estimate.

So what's with all this acne, I thought? I follow a very low fat diet, etc.

I eliminate soy just to see what would happen. My menopausal hot flashes got better. And my face cleared up completely. So it WAS the soy.

I've read several people here who have skin problems with soy. I even read in a book that frequently soy sensitivities are subtle things and may manifest themselves with skin problems. Since you added more soy and your face broke out, I think there's your answer.

On the bright side, I eat dark chocolate (without soy lecithin -- some soy folks do and some don't react to this) and my face is still clear.

I use rice and almond milks occasionally (not Rice Dream, it has gluten despite the label), but now use Living Harvest hemp milk. (The Hemp Bliss brand is awful IMHO). Of course, it comes down to individual taste. I like the LH taste, plus it has omega 3s and no additives I would prefer to avoid, unlike the other milks I've tried.

If you decide to eliminate soy, be sure to check on any supplements or medicines. They don't have to list allergens, as you probably know. I had tried a vit/min supp and after a few days I was getting more hot flashes and my face started getting some pimples. There was nothing about soy on the label. I called the manufacturer, and sure enough the product turned out to have soy.

If you do react to soy lecithin (I guess you just learn this by trial and error), be sure to check with manufacturers and current labels. I had one supplement that said soy free on the label when I first started it and the manufacturer still says soyfree on its web site. But the last time I bought it, I discovered after a while that the label says it has soy lecithin in the glaze.

hathor Contributor

Oh, I would add you should count yourself lucky if you find out the dietary sources of your breakouts at age 28. I finally have clear skin this year ... and I'm 54 :lol:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,680
    • Most Online (within 30 mins)
      7,748

    ashley94261
    Newest Member
    ashley94261
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.