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    Celiac Disease 
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    Bluelighter determinedmom53's Avatar
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    Hi - I'm a 53yo mom recently diagnosed with Celiac Disease as I was stopping my pain meds which had been covering some of the more painful symptoms for years. I'm med free now but the Celiac is a problem. I'd love some advice from anyone who lives with Celiac and how they cope. Do they take anything that helps? I feel a little lost. Any advice is appreciated.
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    The best thing you can do is to follow the diet religiously. It's a pain but I know two people with Celiac, (one almost died postpartum until they diagnosed it), and they are both healthy as can be following the diet. Good luck--I know it is really hard to have to make changes like this.
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    I'm celiac... I was diagnosed 5 years ago. It was an incredibly difficult transition for me to lose access to so many of my favourite foods. It changes everything. It changes how you relate to food, your friends, society. Eating out gets a lot more difficult because of cross-contamination. In my first couple of years I was in strong denial and I would cheat all the time. I would also tell myself that it was OK if there were traces of gluten so I didn't have to embarrass myself by always asking if things were cooked in separate fryers and cutting boards. I hated being "that guy" that waiters had to deal with.

    But... the more you cheat, the worse it gets. I eventually developed enough small bowel scarring from all the gluten traces that I now have difficulty digesting other kinds of food. I eventually lost the ability to do dairy, raw vegetables, and meals with complex ingredients. The celiac disease will do long-term silent damage the more you resist it.

    What ended up making me feel so much better was connecting with online communities and watching a lot of youtube cooking channels. If you don't like cooking at home I highly recommend you start getting to like it because it's really the only way to ensure food safety. But that fact aside, I find now that I prefer my home meals. Restaurant food has so many additives and crap. You get to see it more and more as you eat more purely on your own.

    Gluten free alternatives are everywhere now, but I don't rely on them too much. A lot of the pre-packaged gluten free foods (like the bread) are incredibly loaded with sugar. So you're trading gluten for sweet. The exceptions are the pastas. Gluten free pasta has become really reliable. I have found versions that are indistinguishable from regular pasta so I've recaptured a lot of enjoyment.

    The difficult part is baking and recipes that call for kneaded dough. With GF flour you always need to work in combos of different flours, and they often don't work very well. I tried making potstickers the other night and they totally fell apart in the pan. So yeah... prepare yourself for some depressing failures. But on the other hand, once you get good at certain things, you'll always have them.

    The best encouragement you can give yourself is to find 4-5 recipes that taste REALLY GOOD, that are simple, and that you can make whenever you want. Once you have a basic meal rotation, you can start branching out and building confidence with new foods. Yes, it's more time consuming, but unfortunately there's not much choice. I was super depressed in my first couple of years because I put in little effort to learn about GF recipes, so I was constantly mourning what I couldn't have. Then I met some other celiac people who cooked for me and I was like wow! I feel like I just ate like a normal person again!

    There's one more hitch. The longer you avoid gluten, the more intense your reaction to it will be if you get exposed. Your body starts to back down from being stressed out the longer you're away from it, so if you get exposed it totally freaks out. In my first two years when I cheated a lot, it would give me diarrhea and bloating but nothing to write home about. After years of avoidance, now if I suffer exposure, I lose the ability to digest ALL FOOD for up to 2-3 weeks and I suffer significant weight loss. Usually the first week of a celiac attack involves a lot of time in bed or resting. It really sucks. The #1 thing you need to protect yourself from are ignorant people. Some will try to make decisions for you like, "Oh, it can't be that bad. A few crumbs won't matter." I once had a celiac attack because a friend cooked my GF meal in the same oil as his wheat meal, thinking it didn't matter because my meal was GF. He did it out of pure laziness. I was furious.

    Restaurants will also cut corners or they just won't care. If they say something is GF, you have to ask them what that means. If they're just following a trend, it may simply mean that they made food without gluten, but the food could've still been prepared and stored on the same surfaces as their gluten food without any concern for contamination. You always have to ask. It sucks, I know... but you can't afford to slip. Nobody is going to look out for you, it's your job. If it's fried food, do they have a separate dedicated fryer with clean oil for their GF customers? Are cutting and prep surfaces divided between GF and non-GF? If staff are preparing meals, are they jumping from GF and non-GF prep without washing their hands or changing their gloves?

    I'm lucky because I live on the west coast of North America where GF is trendy and even non-celiac people demand proper food prep... so a lot of restaurants make sure they follow protocol. One bad review and it could tank their business. That said, I have seen MANY, MANY "gluten free" places doing things that put celiac people at risk. You must be eternally vigilant!

    The immediate sign that I've been glutened is that I get brain fog, low energy, cognitive dysfunction and depression. It happens literally within a half hour. That's when I realize, oh shit, houston we have a problem. 1-2 later days my small bowel lining sheds and the diarrhea starts. Usually the first thing to stop being absorbed is fat, followed by sugar. Protein becomes the only viable alternative.

    So you really need to avoid gluten. It really sucks, I know... I feel your pain. I miss the days when I would grab a piece of cheap pizza on the way home from school. However it's a lifestyle you can totally navigate and we are so lucky in the year 2018 with the options that are available to us. I met a woman who has been celiac for 45 years. When she was a kid her parents had to import special ingredients and she lived a very isolated life. It also helps that GF is trendy now. I hate the trend in some ways but in others it's spreading the word.

    Wheat in North America is incredibly toxic now and it's causing non-celiac gluten intolerance in staggering numbers every year now. With that comes demand for alternatives and that's really going to help us celiacs. That said, we will never be able to escape having to do home made. I went to a GF convention in January and aside from some really great hummus, I walked away with no other products. Packaged crap is still packaged crap.

    OK... sorry to write a book. I'm just aware that BL doesn't have a lot on this subject, and my energy is pretty good today so I thought I'd say all I can. Good luck and don't give up hope! It's totally possible to live well and satisfied with celiac disease!
    Last edited by Foreigner; 04-05-2018 at 22:04.
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    Bluelighter determinedmom53's Avatar
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    Foreigner - Wow - thank you so much. I just got a chance to log on for the first time since my post and am so grateful for your response. Since I posted I have read 3 books and signed up for several Celiac sites. I hadn't read about becoming MORE sensitive over time GF so that sort of sucks but I can see what you mean. I went GF after my first visit and am now doing the gluten challenge. Now that I know what I'm looking for it all makes sense. I have suffered severe back and shoulder pain for the last several years and started on pain meds which I am convinced masked some of the gluten pain. Now that I'm off those it's all a lot more real. I'm trying to eat enough gluten every day now for the challenge and I feel so bad I can hardly move but I really want to make sure he has the best chance to get a clear diagnosis. I have DH and positive genes but this is my first biopsy. It's so clear to me that is what it is - after 2 weeks GF I felt like a different person. I haven't figured out how to live in a gluten house full of gluten eaters but I can do it. Eventually. I felt like you - disbelief. Then as I read more and more I started realizing how many years I have been misdiagnosed and wish I could have known 40 years ago when I was doubled over in the playground that I was Celiac. I'm on the west coast too and yes - there are a lot of options out here. I made all the rookie mistakes and will just keep doing my best. I wish I could enjoy all the pasta and bread I'm trying to eat but it feels like I am putting rat poison in my body every time. Thank you again for the words of encouragement. I have found some other sites to be helpful and have joined a bunch. These groups are better than all the medical care there is (such as it is). Real people with real experiences are better than some Doogie Howzer getting it wrong over and over. I hope this post helps at least one other person find an answer. Thank you again.
    DM
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    #5
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    The housemate thing is tough. I hope they are understanding. Some people in the GF have told horror stories of roommates or family members who just don't give a fuck, don't take it seriously at all and just continue living their gluten lives.

    The proper way to go about it is to have separate everything for yourself. Separate cutting knives, cutting boards, frying pans, cooking pots. I know that sounds crazy but gluten can become embedded in anything that is not cleaned properly. If your roommates don't clean something well and then you use it, you're screwed. It may not even be obvious to you but gluten traces will be causing you silent damage. You may feel normal and think you're living the GF life and then suddenly there's a food you can no longer tolerate and you're wondering what the hell. It's because the bowel is being damaged. Not trying to scare you just telling you the reality.

    This is totally manageable, as long as your roomies are understanding. If you have separate cooking equipment and they clean up after themselves, it really has no major impact on their lifestyle. I live alone and gluten is banned in my house. My friend stopped by with French bread last week on his way back from shopping and asked if he could butter some bread in my kitchen and I said nope. I'm already up shit creek right now with my health, the last thing I need is a dusting of wheat in my kitchen!
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