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meeko

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meeko Newbie

Hello,

I want to let you all know how helpful this forum is. I was just diagnosed this week with celiac after years of being told nothing was really wrong and that things would just go away. My symptoms have been persistent but fairly mild compared to my sister who was diagnosed a month ago (the reason I was finally tested), but unpleasant and I am glad to finally have an answer. I am feeling a bit nervous about where to start, however. I have been on some sites to gather information about what is safe to eat and not, but how trustworthy is most of this? I also have been on some customer service sites for Astro Yogurt who says their Jeunesse yogurt is gluten free and Dairy Queen has some gluten free products. Are these sites trusworthy? How do I go about contacting companies to find out if their flavourings might have been in contact with gluten? I am going gluten free on Sat and I want to make sure that I get it out of everything. Any advice on how best to start this challenging, but exciting to start feeling better, experience?

Thanks again, all of the postings on here have been very helpful!


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queenofhearts Explorer

Welcome! THIS is the place to start! So much useful info AND moral support.

Nini's Newbie Kit is great, too-- you can get it on her site, Open Original Shared Link

Ask any question & somebody here is bound to know the answer.

Nice to have you with us!

Leah

Guest cassidy

I usually trust what I find from company websites. I go to the company itself and a lot of them will have the info on the website. If not, I email them. I ask if the product is produced in the same facility as gluten.

Also, if you search on this forum for whatever product you are looking for, you may find out that someone has posted about it. I would say 99% of the info on here is accurate. If someone does post something inaccurate, someone else usually posts right away and corrects the mistake.

I don't know if that survival kit has a list of companies that always list gluten, but that is very helpful to carry with you. I also keep a list of all the words that could indicate gluten.

meeko Newbie

Thank you very much for the advice. I am going on my first gluten free shopping trip today and I am feeling a little daunted, but with all the advice on here I think I will be alright!

beaglemania Rookie

Good luck with your shopping. If you need any help on finding good brand names of food, just send me a personal message or email me, horsegal1139@bellsouth.net. I'm a picky eater and have to have foods that taste good.

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    • nanny marley
      Brilliant thankyou for the information I will contact them tomorrow, I was just concerned because I'm already in a bowel flare too , and I didn't want to take anything that would cause me more issues , especially with the way sweeteners make be feel I've had a really bad throat from this type of stuff before , and it upsets my digestive system too and I have a wedding in a week 😳
    • Scott Adams
      There is no scientific evidence to suggest that hydrated silica or its relative, silicon dioxide, triggers a celiac-specific immune response or causes intestinal damage in individuals with the condition. The concern you likely encountered online is a common misconception. Here’s the key distinction: the protein in gluten (gliadin) is what causes the autoimmune reaction in celiac disease. Hydrated silica and silicon dioxide are minerals, chemically inert compounds of silicon and oxygen, and are completely unrelated to gluten proteins. They are widely used as abrasives in toothpaste and anti-caking agents in food powders because they are stable and non-reactive. While any individual can have a unique sensitivity to any substance, there is no mechanism by which these silica compounds would mimic gluten or exacerbate celiac disease. Your diligence in using a certified gluten-free toothpaste is the correct and most important step, as it eliminates the risk of cross-contamination with wheat-derived ingredients like starch. Based on current scientific understanding, the hydrated silica in your toothpaste is not an issue for your celiac management.
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      There is no single "best" probiotic brand universally recommended for celiac disease. The goal of a probiotic in this context is to help support the gut microbiome, which can be disrupted by the damage caused by gluten exposure. The most important factor is not the brand name, but ensuring the product is certified gluten-free, as some probiotics use wheat-derived starches or are produced in facilities that handle gluten, posing a cross-contamination risk. Furthermore, the specific strains of bacteria can matter; some research suggests strains like Lactobacillus and Bifidobacterium may be beneficial, but individual responses vary greatly. Because the supplement industry is not tightly regulated, choosing a reputable brand that undergoes third-party testing for purity and potency is key. 
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      What you are describing, while terrifying and severe, is an experience that others in the celiac community have reported during a powerful reaction. The systemic inflammation triggered by gluten exposure in someone with celiac disease can absolutely extend far beyond the digestive tract, creating a cascade of symptoms that feel like your entire body is in revolt. The severe pain, neuropathy, muscle and jaw tension, and intense anxiety and confusion are all potential manifestations of this body-wide inflammatory and autoimmune response. It's a well-documented phenomenon that a celiac attack can provoke a significant neurological and psychological component, including "brain fog," disorientation, and panic-level anxiety. While your first step should always be to meticulously re-check all foods, medications, and even cross-contamination sources, it's also possible that a previously safe product has changed its formula or that you encountered a hidden source. 
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      The substance you're likely thinking of is "mannitol," which is a sugar alcohol, and it is indeed used as a sweetener in some "sugar-free" products. However, for an MRI, the drink is almost certainly "Mannite," which is a brand name for a laxative preparation used to cleanse the bowel before the scan. Its primary purpose is not to sweeten but to create a clear image by distending the bowel and stimulating a bowel movement. While the names sound similar, the function and formulation are very different from a small-quantity sweetener. That said, your concern is valid and should be addressed with your healthcare team. The most important step you can take is to call the MRI department or your referring doctor directly. Explain your specific reaction to sweeteners in detail—mentioning the throat and ear sensations is crucial as it could indicate a more significant sensitivity. They can confirm the exact drink they use, check its full ingredient list for you, and determine if an alternative prep is available or if pre-medication is recommended to ensure your safety and comfort during the procedure.
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