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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help! Nerium Age Defying Cream And Oats - Freaking Out Here!
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12 posts in this topic

I started using Nerium about 6 months ago after the company and the friend I buy it from both assured me that the products are all gluten free. Meanwhile I have definitely been feeling different - at times I think maybe I'm getting glutened somewhere and at others I think no, because I have such a consistent reaction to gluten and this hasn't been a full blown reaction. I started to narrow down my reactions to corn products or to at least be certain that corn exacerbates my pain so today I started going through all my products out of curiosity to see what may have corn lurking in it. 

 

I checked my Nerium labels and the day cream has oats in it!!! How can they claim their product is gluten free if it has oats? I ALWAYS react to oats in lotions, etc. I am waiting on a call back from the company - maybe they use certified gluten free oats? I do not have problems with gluten free oats but I can't use lotions from Bath and Body works or other places that have regular oats or oatmeal in them. I have to be very careful. 

 

I am really freaked out about this. I have not felt well at all since I started this product BUT I started it literally the day my husband and I separated and I"ve been under a ton of stress and have attributed my ill feelings to that. And I'm not having full blown typical gluten reactions. I am mortified that I never checked the label myself - I've never done that before. It's been a long three years of learning how to do this gluten free diet right and the last two years I haven't slipped up other than one time accidentally using a Bath and Body works lotion with oats. I immediately got hives head to toe and jumped back in the shower and scrubbed off with no further reaction. 

 

I am mortified. Does anyone have any experience with Nerium???

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If you are putting the Nerium cream on your face, it very well could be making its way into your mouth.  If you feel like that is a possible source of CC, try some time off of it.  I have also heard that product does not work, so if you are spending a ton of money on it, I am sure people on here can recommend some good face creams to try out.  Cosmetic companies are some of the worst offenders when it comes to misinformed false gluten-free labeling, in my personal opinion.  It is highly unlikely they are using certified gluten-free oats, but it is good you have contacted them to check.  If you get hives from oats on the skin, it may also just be a separate skin allergy.  (For example, I can eat cocoa butter in chocolate but on my skin it gives me hives)

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I stopped my membership a long time ago - I did see results at first but they waned quickly and the packages kept piling up long before I could use them. I planned to use out the rest of the product and then probably stop altogether. I am in absolute shock over this. It is really important to me that I know - I do react to ANY product with gluten in it whether its a lotion or makeup or hair product. I have gotten glutened from hairspray, mascara and lotion before, that's why I've always been vigilant. I can't believe I took their work that it was gluten free and didn't inspect the label, that is SO out of character for me. I just feel that I can't  rightly get too angry until I know for sure they aren't using gluten free oats. I received a call back and unfortunately in their company there is only ONE person that has knowledge or handles "this type of situation" and she has left for the day. So I have to wait 24-48 hours for any kind of answer. Obvioulsy I won't use the product in the meantime but I feel like I"m going crazy with curiosity and worry. 

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I feel your pain.  It is always the ONE time you don't thoroughly look that it gets ya, I think it increases my paranoia each time.  I also have a lot of skin allergies so anything that goes in or on my body I have to be totally anal retentive about.  Let us know what the word is when they get back to you!

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I feel your pain.  It is always the ONE time you don't thoroughly look that it gets ya, I think it increases my paranoia each time.  I also have a lot of skin allergies so anything that goes in or on my body I have to be totally anal retentive about.  Let us know what the word is when they get back to you!

I will for sure although I already know in my heart the answer. From what I'm reading about the company online today they are awful and use toxic ingredients. I will never use it again but I at least want them to refund the hundreds of dollars I've spent on their supposedly gluten free products.

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Oats don't contain gluten. Oats are often manufactured on shared equipment but the oat itself doesn't contain gluten. So the company was right in telling you their product is gluten free. You might have a reaction to oats but it isn't from any gluten "in" oats since there is no gluten in oats.

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Oats don't contain gluten. Oats are often manufactured on shared equipment but the oat itself doesn't contain gluten. So the company was right in telling you their product is gluten free. You might have a reaction to oats but it isn't from any gluten "in" oats since there is no gluten in oats.

Oats have a different protein that is very similiar to wheat, rye and barley. Not all celiacs react to this protein the same as they do to gluten but some do have a 'gluten' reaction. They are also commonly heavily contaminated. That is why it is advised that we only consume certified gluten free oats.  

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The product also contains Barley - obviously Nerium is NOT gluten free. This is the day cream I'm talking about, not the night cream. 

 

I was finally able to get ahold of the one person at t he company that is educated on ingredients to speak with her. She claims that they have tested the product and that it's gluten free. She could not tell me who tested it, when they tested it, whether they test each batch or only one time and when I asked how many ppm it tested to she said she had no idea what I was talking about. I explained to her and she says she is going to find out and call me back. Although I'm not sure who she will find out from since SHE Is touted as the company's expert on ingredients. 

 

I don't need any more info, the simple fact is that the product is labeled gluten free despite having oats and barley and I got very sick from it. They have not heard the end of this from me.  

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Oats don't contain gluten. Oats are often manufactured on shared equipment but the oat itself doesn't contain gluten. So the company was right in telling you their product is gluten free. You might have a reaction to oats but it isn't from any gluten "in" oats since there is no gluten in oats.

While not EVERYONE reacts to oats a lot of us do and most doctors and reputable celiac websites will tell you to stay away from them unless they are 100% gluten free grown and processed. Because of this I say it is absolute BS for a product to be labeled gluten free when it contains something known to make many celiacs react. I've heard of celiacs that don't react to a certain wheat product but do to others - that doesn't mean its safe and that doesn't mean something with wheat should be labeled gluten free! Besides that fact, it also contains barley so the point is almost moot anyway. 

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Besides that fact, it also contains barley so the point is almost moot anyway. 

you are saying the nerium contains barley or oats?  i'm a little confused...  and oats don't contain barley :)  

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Looks like she is saying it contains barley and oats.  Nerium really is a giant scam, doesn't surprise me at all they are mislabeling things.

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Gluten free does not include "oat free" though.  Yes, you may react to oats, but a product can still have oats and be gluten free.  I have never heard of this company and have no idea what is or isn't in the product but it could still be gluten free with oats in the product list.  That would be the same thing as something having dairy and saying it's not "gluten free" because you react to dairy and it shouldn't be in there.  Yes, I understand the issue with oats but technically, oats are gluten-free.

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
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