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Everything posted by Ging

  1. It's very good to remember that these places don't have to offer anything, however, it's the flip side of the coin that they shouldn't offer what they don't have or can't accomplish just to try and get a piece of the 'gluten free pie'. Products in grocery stores are doing the same; labels say 'gluten free' when they are not and a lot of us are getting glutened by people who really have no intention or capability to make something gluten free. While no one is required to offer these options and some are honestly trying and deserve all the help and support we can offer, I have zero respect or sympathy for all the people out there who offer these things with no honest, good intent or care. If you aren't going to give it your best, then stop.
  2. I bow down to your work ethic and generosity. 😁😁😁
  3. Oh, wow, thanks so much! In my area there's next to nothing available, so I haven't even heard of a lot of these. So good to hear all these options from someone with firsthand knowledge. 😃
  4. Really looking forward to hearing the results of the trials. The more I learn about my disease the more it seems I'm highly sensitive (more than the 20 ppm threshold) and it would be a huge bonus to even be less sensitive, much less be able to safely eat something with wheat.
  5. Not to stir up a hornet's nest, but this is a point that I think really needs clarifying: https://www.canada.ca/en/health-canada/news/2019/01/statement-from-health-canada-on-glyphosate.html Glyphosate has been demonized with no good science behind it - sadly, the good science is getting no press and now is most likely going to be too late to change minds.
  6. Wheat is one of the most versatile grains known (see all the stuff that has wheat in it and for all the different reasons) and a huge player in areas where not much else will grow and thrive, so I understand why it gets the attention it does. I'd be very interested in seeing where this research goes. I don't know enough about genetics to know the role these epitopes play, but if they've evolved into an unnecessary part of the organism and/or the wheat can be altered without problems it would be a boon for Celiacs and all the other associated folks with gluten issues. I'd be particularly grateful because I'm discovering more and more that the 20ppm threshold is probably way too high for me... .
  7. Tom + Chee's! They made me an awesome sandwich (they use Udi's) on their separate grill and I had some tomato soup with it. The young lady that waited on us gave me all her attention and time to explain how they kept ingredients from contamination, cooking method, etc. Excellent experience and I only wish they were closer. Twisted Kitchen tried, but there was too much cross contamination and not enough attention and process to avoid it.
  8. I get so excited thinking that there might be a place or two that are safe for me to eat out - I get tired of doing all the cooking, all the time. However, I've worked in places where you had to understand sterile conditions and practices. That's really what's needed to get a gluten free meal in the sense that you cannot have any gluten contamination. I have zero faith in the local hires at fast food restaurants being able to understand or practice sterile procedures. Most of the people we tend to complain about in restaurants aren't knowledgeable in that area and frankly, why would they be? It's a big difference from food practices though there's similarities. I'm still finding myself doing things or almost doing things that are possible points of contamination. If a restaurant isn't gluten free to begin with, it's just going to be a risk; sometimes without the preparers knowledge if someone got to the tools or food before them and it's already contaminated. It makes me a bit depressed. When time is short it would be so nice to grab a burger, order a pizza, etc.
  9. Well, son of a gun. The other day I had some pudding I had made and used for another recipe - this was leftover. Broke out. Supposedly it was gluten free - I did read the label - so I didn't suspect it. I'm getting really tired of the inability to use the simplest products and trust the simplest ingredient lists.
  10. Excellent points and I'm glad you made the clarification on the purported methodology of the injection/s. I agree that the semantics are becoming an absurd sticking point.
  11. Perhaps it would be more accurate to say that vaccinations do not equal immunity since in the common parlance (CDC included) vaccine and immunization are used synonymously. I was astonished by your comment that you would not consider a vaccine so you would not have to worry about hidden gluten. Hidden gluten is becoming a huge issue and making many of our lives miserable as we try to stay on a gluten free diet. The children and adults and their symptomology mentioned early in the article surely are well worth a vaccine/shot series should it be as safe as can be otherwise.
  12. Just wanted to give fair warning - if you really love and miss popcorn in all its incarnations, don't indulge in Herr's Fire Roasted Popcorn. It's labeled gluten free with a disclaimer on the bag elsewhere that says it's made in a facility with shared machinery that also processes wheat. They don't clean enough between runs, let me tell you. I had an awesome rash after indulging. The DH is both great for letting you know you've had contamination and awful... for letting you know you've been contaminated.
  13. Wow, so relevant - particularly during this season. I've been telling family to just not attempt to make me anything. Not to bring anything 'gluten free' that they made to family dinners; just not to try at all. I've been clear about the near laboratory standards you need to be sure (as much as possible) of not having any contamination. I STILL had to shoot down one family member who very sweetly told me about some research she had done and what and how she wanted to do for the next family get together. As polite and appreciative as I was, I got a response that sounded wounded as they 'only wanted to do something nice' for me. I didn't tell them that not making me anything is the nicest thing you can do. I may print this. I think I'll need to remind myself of this many times in the future. The rudity is not on my - our - part/s.
  14. I'm not going to look at this as a fear mongering article, but a reminder to take control and responsibility for my own diet and push for responsibility on the part of companies producing these 'gluten free' products. We live in a society that's constantly seeking to place blame on others shoulders and so much of this rests with the individual... UNTIL someone starts lying/committing fraud/practicing blatant misrepresentation. Then we still need to make these companies accountable in a meaningful manner. We need to remind them that they affect people with serious medical issues and not just fad dieters. Some accountability would be terrific, but I don't know that there is anything out there that would impact these companies in a significant way.
  15. Wow. Unbelievable behavior and I am so sorry you had to deal with that. If you kept your composure, kudos to you. Those are some great examples of things I think I, and maybe others, need to stand firm against. Politely, of course. Doctors, Religious leaders, and 'experts' like chefs are not infallible and we need to stand firm when we are told these absurdities. I've reached a point where I will courteously tell someone they are misinformed or ignorant of the facts/definition when it comes to me and my health and wellbeing. No one should be told to 'suck it up' in reference to a medical condition and I would make that clear to my pastor or anyone else that callous. And restaurants? We're paying. PAYING for them to do these jobs. If they don't want the job they should refuse it. Otherwise, we are like any other paying customer and shouldn't be 'grateful' for the poor or nonexistent efforts. I would imagine the pizza place would change their tune if they looked at the gluten free parameters the way we look at peanut allergies today. Courtesy is important to me, but I've learned there's courtesy and there's behaving like a doormat. I can be courteous and still protect myself and stand up for myself the same as if I had an outwardly obvious medical issue. Just because I can't point to it and say 'see?' doesn't mean I can't act with the same confidence in the face of other's dismissal.
  16. My eyes have been opened to one big drawback from the 'fad' gluten-free dieters through reading these comments - the difference between products flooding the market that are marked 'gluten free' and those that are CERTIFIED gluten free. I'm still fairly new to this. If I see 'gluten free' I may believe it and end up getting glutened without realizing that it's actually not certified. I have DH and silent gut symptoms for the most part. Often by the time I figure out I've been glutened it's too late to figure out what it was with confidence. Thanks for the little epiphany everyone - if we need anything right now, in my opinion, it's stronger and more clear rules and regs on labeling and defining what is truly gluten free for both the Celiacs and the fad dieters.
  17. What an excellent point. I wouldn't have trusted that either - in fact, I probably wouldn't have chewed on the 'lifeless' salad. I'm actually glad to see that so many places are no longer complaining about people bringing their own food. I was diagnosed just this past spring and I'm just beginning to comprehend what the disease means to me. Travel hit me like a brick. How do I do it? In my area, there's no such thing as a gluten free restaurant - of any kind. Knowing what I do now about preparing gluten-free meals I don't trust eating out anyway if they aren't doing that as a matter of course. For this woman to complain so ignorantly is a bit depressing on a lot of fronts. Would more choices be great? Yes! I grew up in a time where you handled your own issues, though, and for me any concession is just that. A wonderful concession I greatly appreciate. I don't expect people to handle all the allergies out there. They'd go bankrupt in a week. It's just not reasonable in most cases.
  18. I found the Jimmy Kimmel video very telling. It exemplifies what happens to society's point of view when something becomes 'trendy' whether there is a genuine problem some people face or not. It can be bad enough when popularity of a diet/fad/idea/opinion causes harm to businesses and industry, but it's even worse when it gets down to an individual's health and what amounts to casual poisoning. The saddest part? I get the outlook of some of the public when you see videos like Kimmels. These people have jumped on a bandwagon without any idea of what the wagon is, where it's going, or what its purpose is. Of course, it's not okay to lie to someone about the ingredients of their food - don't misunderstand me - but I can understand the irritation. Wait staff, kitchen staff, etc, go to a lot of trouble for some of us and special requests can really disrupt a kitchen and restaurants flow. I imagine they hear a lot of bad information and bad or ignorant opinion and thoughts. I try to make a point of letting them know, like some others here have said, that I have a medical issue. A disease. Sometimes I can tell that saying 'autoimmune' or 'allergy' is the ticket to get serious attention. I don't like that, though. At times, it seems I sound self-important when I go that route. If it keeps me from getting glutened I'll do it. What a shame we have to deal with that sort of jaded disbelief.
  19. Oh, wow, I sure hope you are done with this soon - you're almost there as the post date implies! Don't give up after all this investment - maybe you'll get that positive result for the insurance coverage if nothing else. Best to you!
  20. Could that be the source? Eating out? Every single time I've attempted it I've broken out afterwards. Then again, we have no dedicated gluten-free restaurants here. Just a 'for what it's worth' - my breakouts don't itch that horribly either. They seem very similar to what you experience.
  21. No! I did not mean that - I meant amount. One symptom versus the laundry list some people have been dealt. I'm not bent out of shape about this or frantic. I like to lay out all the thoughts/questions/info so that there's less back and forth, so no worries about needing to be calm. I appreciate what you're saying and I'm not at all upset with your answer. I think the problem I was sorting out was exactly that; sorting. I'm only looking to educate myself and understand. I suppose a barrage of questions might seem frantic, but it's curiousity. When you first approach this disease and forums like this you get many, many different related topics and advice, not to mention anecdotal experiences and evidence. As you said, the gluten free diet is the answer, but there is a lot to learn about the disease itself and I'm just starting. Thank you again for taking the time to respond. It's a big help.
  22. Okay, is that true for everyone? I've read some differing info and this is where I get confused. I thought the implication was that it varied from person to person. Some with more symptoms, some with less, some having more gut damage, others having next to nothing but rash. Conversely, I've thought the implication in some articles was that you had little symptoms but were still having the effects without knowing it; this sounds like what you are saying. I'd be grateful to have this cleared up because it's at the heart of what I need to know so I can move forward in the right direction. My GI doctor seems to think the DH means the disease is out of his purview. I wondered if that was the case or I still needed the endoscopy and to start paying more attention to that aspect that I've somewhat ignored. Like you, I believe I've had some symptoms and had no idea prior to this diagnosis. I'm wondering if I need to change my whole approach and thought process about this... .
  23. My understanding is, and I hope more experienced people will weigh in on this, that if you're like me with very little symptomology beyond the rash you won't be getting much damage. Everybody's different and I know probably some will be getting damage/need to watch for some complications, but it seems highly variable from person to person. My reading says some DH sufferers have little to no other issues - we just have the actual disease of Celiac with a different set of symptoms. So we test positive but it manifests differently/can manifest differently. I do wonder what things will effect me like they do anyone with Celiac. Iodine? Do I need to be careful of that intake? Or am I more 'typically' allergic and the results of my disease are going to be treated/behave in that manner - less concerns of malabsorption and the like since my intestine might be in significantly better shape. (Must get an endoscopy to be sure at some point.) It's all very nebulous and that makes it all very frustrating because so much of the time the answer is 'maybe' or 'don't know'. Or at least that's what I've found so far. The wealth of knowledge on here is immense and I'm just scratching the surface. Hope someone else responds.
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