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123glldd

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123glldd Collaborator

Currently being tested for casein...hoping that will come back fine so dairy can be had eventually. I have limited calcium and i really don't want to have to take supplements. I do have one i bought but haven't taken it. Most leafy greens are high in sals...thing is i was having broccoli (high in sals) and chewing gum (almost everyday and also high) a lot during that time and this pain would only hit me once a month. Weirdest thing. Not sure what caused it. But another thing I cut out was rice chex so i dunno if that could have been a culprit too/instead? SO right now..i'm eating boiled potatoes...lean ground beef...black beans....going to re-introduce cabbage next and then hopefully garlic...brussel sprouts....etc We'll see where it takes me as all those are low. Eventually i will work up to moderate sals...if i'm ok with that i'll try broccoli again. This will take a while but if i can get to broccoli again...eat it for a month and not get pains then i'll be at a loss for what was causing the pain unless something in rice chex didn't agree? I also have not re-introduced garbanzo beans yet but black beans don't bother me.


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123glldd Collaborator

Unfortunately the first half of my journey gluten free i never stuck to whole foods..i was eating amy's until september etc....so...it's been hard figuring out what my issues are suddenly.

mushroom Proficient

I can't eat rice chex either (dunno why) and no legumes of any kind, black, garbanzo or green, or lentils or split peas (or green). No corn, no soy, no nightshades, no lemon. We just have to figure out what works for us. :)

rebeccanicole88 Rookie

Mold could be making you sick. If the air vent isn't cleaned then the dust you are breathing in can make you sick. I have found that if there is mold somewhere that I breath in, it makes me very sick.

brigala Explorer

I don't think it's very common for there to be gluten in laundry detergent. Shampoo and soaps are another matter - I bring my own. 

 

I look for hotels with kitchens, or vacation condos. I am not comfortable eating out very much unless it's at a dedicated gluten-free restaurant. 

 

I bring a roll of tin foil and line any  baking sheets or whatnot before using. The first thing I do when I arrive is re-wash all the dishes and utensils. I don't use the toaster at all. If there are plastic or wooden utensils, I don't use those either. 

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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.
    • Scott Adams
      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. 
    • Scott Adams
      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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