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Does A "master" List Of Gluten Ingredients Exist?


Kim27

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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!!


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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!

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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