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This Is My Life


Jo.R

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Jo.R Contributor

When I first found out I had celiac disease I was a mess, when I finally got a grip I lived on the internet (this disease had to truly be difficult for those who were dx before the internet). I read books on the disease, and basically submerged myself in everything to do with it. It was always on my mind. Celiac disease was who I was. But I have started to move past that. I'm educated about what I have, I'm learning to cook (I had fried chicken, country gravy and yellow cake this week), I now "do gluten-free" without thinking about it. I don't think much about it during the day. I have become a person with a life again. I just happens to have celiac disease, and it's not that big of a deal.

Thank-you to all of you who put yourselves out there to help the newbies get past the hard part.


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Teacher1958 Apprentice
When I first found out I had celiac disease I was a mess, when I finally got a grip I lived on the internet (this disease had to truly be difficult for those who were dx before the internet). I read books on the disease, and basically submerged myself in everything to do with it. It was always on my mind. Celiac disease was who I was. But I have started to move past that. I'm educated about what I have, I'm learning to cook (I had fried chicken, country gravy and yellow cake this week), I now "do gluten-free" without thinking about it. I don't think much about it during the day. I have become a person with a life again. I just happens to have celiac disease, and it's not that big of a deal.

Thank-you to all of you who put yourselves out there to help the newbies get past the hard part.

I know this is different because it was a choice that I made long ago, but I had the same experience with being a vegetarian. My whole identity was wrapped around it when I was young, but as I got older, it was so effortless that I stopped thinking about it. Maybe someday I will be like that with the gluten-free diet, but right now it really occupies my thoughts quite a bit.

Kaycee Collaborator

I can relate to this. Prior to being diagnosed lmy ife went on, knowing something was not right, but upon diagnosis my whole life totally revolved around gluten and the diet. I had to put my life on hold until I could sort out what needed to be done.

Now just over a year I am back living, have been for a while. I don't think about the disease, nor do I overly think about food. It is second nature to me now, I just know what I can and can't eat (I read a few labels, but not many). I have lost the stress that was there orginally and am totally at ease with my diet.

Rarely, but it happens, I sometimes stress out and want to eat something illegal. But I dig my heels in and ignore those thoughts. I seem to be hell bent on destroying my diet after I have inadvertently ingested gluten. Strange that, maybe misery likes company, or else I am feeling so miserable what would feeling a bit more miserable matter.

Cathy

confused Community Regular
When I first found out I had celiac disease I was a mess, when I finally got a grip I lived on the internet (this disease had to truly be difficult for those who were dx before the internet). I read books on the disease, and basically submerged myself in everything to do with it. It was always on my mind. Celiac disease was who I was. But I have started to move past that. I'm educated about what I have, I'm learning to cook (I had fried chicken, country gravy and yellow cake this week), I now "do gluten-free" without thinking about it. I don't think much about it during the day. I have become a person with a life again. I just happens to have celiac disease, and it's not that big of a deal.

Thank-you to all of you who put yourselves out there to help the newbies get past the hard part.

I so agree with you. The first two months i wanted to read everything, i had to read every post on this forum and others, i was always looking stuff up, Ibet 6-7 hours of my day was looking stuff up or reading about it. I am still reading and thinking about it alot but not nearly what i was. I cant wait to get the cooking down pat, and to make fried chicken and country gravy(u can pass me the recipes lol).

I think if it was only me with the diesease, then i could handle it better, but it is so hard with an teenager, it seems i want to get him on the right track more then me, i dont want him to suffer like i did for so many years.

But like we were talking last night, he said he couldnt think of anyone else that he would rather go threw this journety with besides me. Who i wanted to add, is finally starting to realize the whole gluten and cc issues.

paula

spunky Contributor

Glad to hear you've gotten past the hard part! I think I have too...and my health is so, so amazingly better now.

If it weren't for this board, and my many months of lurking, often in tears, I hate to think what kind of awful shape I'd be in today.

pedro Explorer

I am glad for you. I also agree with you. At the beginning is very hard, but as time goes by life gets easier living with celiac disease.

Best regards to you.

JennyC Enthusiast

I'm so happy that you have have accepted this disease and moved on with your life. Celiac disease should not define you or anyone else. My son is the one with Celiac disease and I also plan on getting tested. I am getting really used to cooking gluten free, avoiding cross-contamination, and so on. However I am still obsessed with his disease. I spend tons of time on this message board, I think about it a lot, I read about it quite a bit, and I am totally obsessed with food shopping and cooking. I spend tons of money on food, and visit many stores both online and actual stores. I spend hours each week surfing the web for recipes. I call a few companies each week to find out about products. I hope to be where you are soon. I think that it's a process. The first day my son was diagnosed I thought that his diagnosis was the end of good food. I gave away garbage bags full of food and went to Wild Oats and bought everything with the label gluten free or wheat free. The next day I found you wonderful people and began to get a real picture about what the diet and gluten free life is really like. The third day cross contamination dawned on me. A week later I tried gluten free baking recipes. A couple more weeks later I started converting gluten-containing recipes to gluten free recipes. Today I am emailing my friend a recipe for gluten-free brownies so that she can convert them to gluten brownies! :lol: Sorry for rambling. My point is that it is a journey with many small steps and stages throughout the way.


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Sinenox Apprentice

I have no real input. I just wanted to say that it really picks me up to read stories like these, particularly as someone who hasn't reached the plateau yet. I still wake up some days wanting to break with the diet or needing to remind myself that "food is not for pleasure anymore". These stories give me some hope, even if the circumstances aren't always shared.

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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.
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