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

Does A "master" List Of Gluten Ingredients Exist?


Kim27

Recommended Posts

Kim27 Contributor

I'm having a hard time getting handle on the things I need to avoid since being recently diagnosed with Celiac disease. Besides the obvious listings of ingredients like wheat, barley, rye on food AND also hygiene products, make-up, shampoo, conditioner, lotion, toothpaste, deodorant... What are other ingredients to look for??? How do you know if they have 'hidden' gluten under some complicated name that you don't recognize? For example, I looked at all my shampoo, cond., lotion, toothpaste, etc. and the only thing that listed wheat was my shampoo & conditioner, however, from this forum it seems that others have a HARD time finding products like that DON'T contain gluten. I find it unlikely that I would happen to have the ones that don't have gluten. For example, I read one post on here that said tocopheryl acetate in hand sanitizer sometimes is made from wheat, I would've NEVER known that, how would you ever know that! So my question is for the experienced Celiacs out there... What do I look for??? What are the ingredients you look for to avoid in hygiene/ make-up products and also food??? What else do they list wheat/barley/rye under??? Any help would be greatly appreciated!!!!

Thank you!!


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



Celiac.com Sponsor (A8-M):



Heidi S. Rookie

This book really helped me figure out grocery shopping and pharmacy information. Recalls do happen but they try to post updates on their website. They have a section for skin care, hair care, over the counter meds. Its not complete but it helps.

Open Original Shared Link

Unfortunately, I have not found a master list b/c products and ingredients change. For me: I found some staple items and then slowly add brand names that I research. I try to stick to easy things that I can remember, example like Make-up: BareMinerals (everything except %100 natural lip stick/gloss). You do have to email the companies now and then to check but it gets easier! Do the best you can and stick with what you know!

Tocopheryl or vitamin E you have to check the source it is derived from. Also watch the genus for wheat is triticum.

There are a number of species including:

Triticum aestivum

triticum aethiopicum

triticum araraticum

triticum boeoticum

triticum carthlicum

triticum compactum

triticum dicoccoides

triticum dicoccon

triticum durum

triticum ispahanicum

triticum karamyschevii

triticum macha

triticum militinae

triticum monococcum

triticum polonicum

triticum spelta

triticum sphaerococcum

triticum timopheevii

triticum turanicum

triticum turgidum

triticum urartu

triticum vavilovii

triticum zhukovskyi

See a pattern if I see Triticum...anything, I avoid.

Carmel Coloring is still debated but I avoid, Natural Flavorings-you have to check what they are, Barley is

"Hordeum vulgare" and "malt" you must watch for barley. Vinegar is ok if it is distilled but not in other forums.

This can all be very overwhelming, you will learn as we all are still learning, use the forums most ppl post up to date information as it happens or research they do!

Skylark Collaborator

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. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    2. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    3. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    4. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

    5. - Scott Adams replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Medications

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

    • Total Members
      133,189
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
×
×
  • 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.