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Coming Out Of The Flour-Bin...


MrAtari

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MrAtari Newbie

I guess I have a variety of things running through my head, least of which concerning forum edicate (though I will make the attempt). So I'll just start at the beginning, and hope I am recieved with a little more compassion than the rest of the people I've encountered in life.

I was diagnosed a few years ago now, I want to say January of 2010. So fairly recent. I'll admit here and now, I thought going gluten free was no big deal. That Celiacs disease, in my head, was the silliest thing I could have ever imagined, let alone find out existed. Joke is on me apparently.

Don't be insalted, these were just my first impressions. I was upset and angry, and quite frankly still am. I only have myself to blame however, as I didn't take thise disease seriously in the beginning as maybe (most of you) you have. I thought it was a simple solution, that maybe even miniscule doses (such as contaminates or chemicals) were fairly laughable. Again the joke was on me.

Doctors are nice people, but they can't tell you everything if you don't ask the right questions. They pretty much say you are screwed with this thing now, and that's their job. I understand that. I'll tell you this - I wish I had not been a cocky idiot. Wish that they had more immediate information and support to give (locally) than a simple photo-copied pamphlet of a generalized gluten-free diet. No wonder I treated it like a joke, their method of treating the patient wasn't much better. But hey, that's all they could do right? So I walked forward in the dark.

To whomever reads this, yes, I am an angry Celiac. I'll tell you what though, I only have myself to blame. I was given resources countless times and ignored them. I thought it was as simple as "avoid bread and preservatives" (which btw turns out to be a LOT of things) ... which I did happily for a while. Soon I discovered how limited my diet was, or, what I was limiting my diet to, to be precise.

Say for example, I am the type of person that can eat the same thing for a week straight with very little complaint. Later on I found myself craving (MADLY) for my old dietary habbits. I miss the Subway, McDonalds, any mom-and-pop dinner. I'm a lover of the sandwitch, and I hope I'll find something satifying one day. (I do love Udies Bagles however...Great for Burgers..)

Back to the point, I limited my diet severely to the few types of foods that I knew were safe. This in my experience turned out to be a GIAGANTIC MISTAKE. Variety is important, just as any new discovery is. Some things are hard to do, and looking more inward at myself (lol) this happens to be cooking. Some of the recipes I've found seem so...gormet...It's fairly intimidating to a person like me, that is not the experimental type.

Yeah I'm a big dummy, but even dummies are celiac w/DH. I'm sure most could figure that out by now. Maybe it just takes me a while to "warm up" to things, this disease being one of them. Just today I found out about hygene (soaps, detergents, etc.) and for once after a shower my skin didn't flake off. Feels nice.

So I'm gunna wrap this up. I found this forum here, and it has more information than any generalized Celiac site I've been too so far (then again, I do have a short attention span. STOP JUDGING!) so I wanted to say hello. It has been a very large help for me, regarding personal hygene. Hopefuly more in the future. Apparently I need new cookware as I have been cross-contaminating myself. Just another new thing I learned, and am thankful to learn.

So to everyone here, thank you. My name's Adam, and I hope my (bitter) personality isn't too off-setting.


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Marilyn R Community Regular

Hi Adam,

Welcome to the forum. All of us learn more here than anywhere else, I think.

Di2011 Enthusiast

Hi Adam,

I hope gluten free works for you. I was pretty crazy/incomprehensible in my early days of gluten problems so hope you will continue to post like I did - reluctantly. Posting problems/questions issues one at a time was my lesson.

GFinDC Veteran

Welcome to you Adam. We all learn at our own pace, even if we are in the came classroom. No biggie, the goal is the same to learn how to eat a healthy gluten-free diet. Since you mentioned DH, you might want to check out the Dermatitis herpetiformis section of the board. And the recipe section might help to. Try a search on snack ideas or breakfast idess. Not everything is complicated to cook. :) Hello crock pot!

  • 2 weeks later...
deltron80 Rookie

welcome to the rest of your life

Roda Rising Star

Welcome MrAtari(Adam)! How to deal with celiac disease is a big learning curve. It's unfortunate that a lot of doctors tell you that you have celiac and send you on your way with not much resources. I had a month from when my blood work was positive till I had my scope that I scoured for information(I had been doing research prior on my thyroid disorder and anemia when celiac kept coming up so I asked to be tested).

My endocrinologist, the doctor who order the blood tests, wanted me to consult with a GI and go off wheat. Boy I'm glad I did know to stay eating normal until I had my scope/biopsy. I didn't know though I didn't have a complete celiac panel. I still got my answer though. After I had my biopsy the path report was pretty conclusive for celiac but my GI gave me the option to stay eating normal and recheck blood work in 3 months or go on the diet. Again, I feel fortunate that I was "lurking" around this site for awhile and knew what I needed to do. Then I decided to consult with a dietatician..I knew more than she did and even found mistakes in the information pamplets she was handing out! Frustrating.

Like I said before I was greatful I had found this resource beforehand. None of the people I consulted with had a great grasp on the whole picture of living gluten free. I feel bad for people who only get partial information.

Again welcome. This can be a great site for information.

  • 3 weeks later...
xjrosie Apprentice

Welcome.

I'm pretty new to the forums too, and this whole thing is very distressing; I totally agree with you there.

But, now it's been two year. No point in beating yourself up about what is in the past. Move on and proactively get involved in finding the resources (obviously you are, because you're here!).

I don't have Celiac, but my daughter does, and she's T1 diabetic too. What a PITA!! I did mention to my best friend the other night that I think I might have it, and he asked why. I said, "How often and how long have I been complaining about stomach aches, tiredness, depression, and general achiness?" His answer was daily, for years. So I'm getting tested. I'm nervous.

But at least it's not the end of the world. I can honestly say that the food offerings for Celiacs has practicaly quadrupled just in the six months that I've been dealing with it with my daughter.

I've found pizza places with GOOD gluten-free pizza. Chain restaurants are now catching on. I even saw a Chex commercial last week that was solely about the five flavors of cereal that are gluten-free. So it won't be long before the food we need to eat is very mainstream.

Don't let it defeat you. It's going to get better, or at least you'll get more used to it, right?

I've only been here a couple days, and the people here aren't afraid to answer questions straight-up or even pm you with additional resources. It's been great, so come back more!


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    • 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.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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