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Curious121

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Curious121 Rookie

I have decided to just try the gluten free diet and give it time to see if I feel better. Given all the responses and all the success stories it makes a lot more sense to me now just to start cutting gluten out of my diet. I talked to my health food store manager and he was a great help. Said that wheat in general is hard on the stomach so either way I am benefiting. This website is a great great help, I would be lost without it. So far I have been (as far as I know) gluten free for a few days. I am still getting gas, but it is actually not nearly as bad as it was, but still bad enough. For a while I am staying clear of milk products also. Does anyone have any suggestions for someone just starting out on the diet? Oh, I am also taking Enzymes that helps gas. Hopefully that helps also. Are there any really sneaky ingrediants that I may be missing on the lables, any hidden flavorings or anything? I am pretty sure I have a good handle on it, but I may be wrong.

Again, thank you to everyone who was so informational throughout my last two posts. I hope this improves my life and I will keep everyone posted on my progress and post any questions I may have throughout the diet.

Oh I found the gluten-free menu for Outback, that made me happy :P

Sarah


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Guhlia Rising Star

Someone on here mentioned that their lotion had Vitamin E in it and that contained gluten. I don't remember who it was or what the product was. Gluten can be hidden under natural and/or artificial flavorings, malt, confectioner's glaze (that info may be out of date, I can't remember)... I'm sure there are other ingredients to avoid.

Be sure you've removed gluten from all your personal care products including lip balm, lotions, and shampoos. ALso, stear clear of your toaster (it has gluten crumbs in it). I would also stear clear of used cutting boards, buy a cheap one for now. Be sure all your dishes and glasses are very clean. Also, if you ate on the couch, you may want to do a quick couch cushion vaccuming to be safe.

Sounds like you're making some good decisions and are hopefully on the road to recovery. Good luck!

happygirl Collaborator

Good luck! it sounds like you are well on your way.

make sure all your "dippable" condiments (butter, cream cheese, dips, etc) are kept separate....one labeled NOT SAFE and one labeled gluten-free (or something like that). This helps prevent the cross contamination.

no making out with a partner if they just ate gluten or drank beer....make them rinse/brush, etc

tinkyada pasta is the best :)

let us know what else we can do---we are here to help. i have all the faith that you will do well!

Curious121 Rookie

Just a quick question. Why is it important not to use Gluten Shampoo? How does it effect my intestine when I am washing my hair with it? Can I really just some how catch a few gluten proteins by either crumbs, or beer in my boyfriends mouth, and it cause damage? I have room mates - so it is going to be challenging enough to keep somethings gluten free. So how much should I stress out about a little contamination say on the couch or counter?

happygirl Collaborator

Well, it depends. Do you want to be 100% gluten free or just gluten lite?

Yes, I thought it was picky too....but its what you have to do to be gluten FREE. Your body does not care how gluten gets in your body...accidental or on purpose, gluten is gluten is gluten.

Would you feel comfortable dipping your knife in peanut butter that had rat poison (although, just a little bit!) in it? Or washing your hair in rat poison? (It doesn't go through the skin, according to researchers. However, it can easily get into your mouth just a little bit). Would you feel comfortable making out with somone at a bar with rat poison in their mouth? (I know it is dramatic, but that is the point---gluten is a poison to Celiacs). Doesn't mean you can't kiss after they have rinsed/brushed. :)

Label things and tell them under no circumstances are they to use it. Assert yourself---if you take it seriously, they will realize it IS important. If you don't do it, then you can't blame them for not taking it seriously.

Its one thing to have crumbs---then just clean it up and don't prepare food there (maybe always prepare your food on clean plates, not on the counter)....but crumbs IN food products, to me, is another story. Also, you can't use the "common" toaster because of cross contamination with the crumbs (even if you try to dump it out)

The treatment for Celiac is a strict gluten free diet, not just gluten lite.

aikiducky Apprentice

You'll probably find out for yourself I'm afraid. :( Most people become more sensitive to minute amounts of gluten after cutting it out of their diet, and yes a bread crumb is enough to make you sick. And sure you can get a bread crumb or food crumb in your mouth from kissing. My hubby always wipes his mouth and rinses quickly with water before kissing me if he has just eaten. After a while it's no big deal, you both get so used to it.

The deal with shampoo is that you don't want to have it get accidentally in your mouth, and there have been board members who found that they had lingering mild symptoms until they changed shampoos. Personally I just prefer to have a shampoo that hasn't got any wheat or oats or whatever in it just so I don't need to ever think about it when I wash my hair. Ditto with conditioner (especially since I use a leave in one) and body lotions etc. Well even more so with something like body lotion because obviously if you have it on your hands and then go and prepare food, you can ingest some.

Bottom line is you'll probably find ou how sensitive you are after a while. These are pretty common precautions for gluten sensitive people, even though they might seem over the top in the beginning.

I live in a not completely gluten free house myself, the way I deal with couches and conters is I never ever eat something if I let it fall on the counter even, and I use a tray to prepare my food on, and if I eat in front of the tv, I keep my stuff on the tray. You'll figure out a system for yourself after a while.

Pauliina

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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