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Newly Diagnosed
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Thank you for all of your kind responses. It is such a comfort to know that someone understands what I am going through. I have a loving, supportive family. However, they do not understand what they call my "obsession" to seek out and eliminate gluten from my life. They roll their eyes when I talk of cross contamination, labeling, and all of the other new vocabulary that I am still learning. So please keep posting, everyone, because this forum is a lifeline.

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I know exactly what you mean. My friends and family were very supportive at first, but the eye rolling thing is a good clue that I've about saturated everyone with my knowledge of this disease.

And I agree, this forum is an excellent outlet to learn, vent or give advice, about this curious ailment. I now find myself talking to people I don't even know about things I thought I'd only share with my husband. Alas, I don't share as much with him anymore. Some things I do, because he really wants to understand this disease better. But most of the time, he looks forward to me returning to my "normal" diet and lifestyle.

H.

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I think one of the things that helped me with regards to having people respect what you say about contamination is "less chat, more hat". Ok, the quote from The Simpson's falls apart a bit on those last two words, but basically, the idea was to stop talking about it, and just do it. In a friend's kitchen, I'd check which cutting board was reguarly used for bread, and when I got an inquisitive look, I'd just say that I want to avoid contamination - exactly with the confidence and self-assuredness (and, "I'm doing this no matter what"-edness) that I'd use for dealing with, say, raw poultry. I think they got tired, to a degree, with all the talking about it, when the important part is the action. (They were always receptive, but as much as they can respect the boundaries, it's not something they're going to spend much personal mental effort on, beyond what needs to be done to keep me safe.)

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I agree about "action." I want to manage this disease, and not the other way around. I have gathered as much knowledge as one can in 4 months and it's time to step in to action and have this diet second nature to me. Probably easier said than done and this forum is a great place to ask questions.

H.

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:) Hello everyone!

I was recently diagnosed (almost 2 weeks ago) and have been trying some glutten free foods for the past 3 days! I need a little help...where do I go from here? There is no support group here where I live (I have even researched and have yet to find one in this whole state). What kind of advice would you give to a recent newbie who had never even heard of Celiac Disease until almost 2 weeks ago? :(

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Doggie - the best advice I can give is to eat simply. I don't mean boringly, I mean stick with whole foods, and unprocessed foods. The produce aisle, the meat counter, the aisle with beans and rice, and the spice aisle are all you need to make a lot of very tasty food. (Ooops, and the dairy case, if you can have dairy.) (And a caveat on the spice aisle - avoid the "seasoning mixes" until you are comfortable reading ingredients and calling companies, but the common brands of pure spices tend to be gluten-free.)

Take some time to read through the resources on this site (particularly the safe/unsafe list), browse through the topics on the boards, and do some google searches on celiac, gluten intolerance, and gluten free diet. It'll take some time to get familiar and comfortable with the diet, but you're already on the right track by asking questions.

If you note where you're from, someone may know of a support group in the area.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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