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Newbie And Overwhelmed
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Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thanks in advance!

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im a newbie too and completely overwhelmed, frustrated

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Not really, just jump right in. It won't be long before you learn what to do and what not to do :P

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Hopefully your doctor has made an appointment for you with a dietician or nutritionist. My doctor sent me to the local hospital for a 2 hour orientation on celiac with a dietician. She had mounds of helpful info - local restaurants that served gluten free foods, local support groups, online support groups, lists of foods with hidden gluten, diet guidelines, lists of food additives to avoid, meal planning, etc....very helpful.

Honestly, eating at home most of the time is the way to go. Even eating out where menu items are labeled "gluten free" in restaurants that also serve food with gluten is risky because of cross contamination. If you need to eat out sometimes, make sure you eat at a restaurant where the staff knows what "gluten free" means and where they offer a gluten free menu...you still may be "glutened" but sometimes you need to be able to eat out (vacations, etc.). We have one cafe and bakery that is near us that is completely gluten free - the owners have celiac and they understand the issues...see if there isn't something like that where you live.

Unlike many on this forum, I am not unhappy, overwhelmed, or feel like my life is over because I have celiac - I find it very easy to live a gluten free life...don't have a big pity party over this - living gluten free is completely doable and delicious and with the help of your doctor and/or nutritionist, you will eventually get healthy and feel great. I noticed a difference within a month - I feel great now - gluten free for almost a year now.

Important: Don't let your celiac disease define every facet of your life - live your life, be happy, don't focus on what you can't eat - instead look at all the things you can eat (tons of things!). Please don't expect all your friends or family to cater to you or have pity on you or prepare food that you can eat because you have celiac - your celiac is your responsibility only - deal with it intelligently and quietly and you will have good relations with those around you. You'll get used to it in no time at all - really you will. Good luck to you!

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Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

This helped me, at first:

- ignoring the processed food for a while and eating whole foods - veggies, meats, fruits, that sort of thing. gluten-free grains - try to get them from places like Bob's Red Mill, where they are tested to be gluten-free. This makes it MUCH easier at first, so you aren't trying to read the label for a million different foods. Just have some fruit and veggies for snacks. Try some peanutbutter with apples (the peanutbutter needs to be gluten-free, though). go for foods that are naturally gluten free: roasted chicken with butter rather than oil, roasts with salt and pepper and onions, squash soup made from scratch, popcorn with butter, homemade french fries, carrot sticks, homemade soups and stews, broiled fish, rice and stir fried veggies with gluten-free soy sauce. Lots of options. :-) Also, they make gluten grocery shopping guides that you can purchase - cecelia's marketplace has one. These list common products that are gluten-free, and is updated yearly. That was a huge help - not perfect, but a big help. :-)

- To try and remember what you need gluten free, or how to avoid contamination, just think: if it touches my mouth/lips, it needs to be gluten free. So if shampoo flows over your lips, if you kiss someone else's lips - those need to be gluten-free. If food touches your food, or knives, or pans - needs to be gluten-free or cleaned until they were.

If it's wood or plastic, it can't be cleaned completely of gluten and you need a new one: wooden spoons, plastic or wooden cutting boards, that sort of thing.

- remember that gluten is not a bacteria or germ. This means that things that simply sanitize won't necessarily destroy it. Gluten can be heated to 500F and that still won't destroy it - think how hot the oven is to cook bread, and that's still bad, right? Soap and water will clean it off, and so will scouring if it's hard residue. But sanitizers and simple hot water won't get it all off.

- Remember, food doesn't have to define us. That was hardest for me, as many of the social things I did with my spouse revolved around food. Instead, we're trying to go out hiking, biking, theater, parks - places where food is not such an issue. It's quite fun, actually. :-)

- And it will get easier! For most of us, the most amazing part is how much better you FEEL once this gets started. It's often shocking how much you realize has been 'bad' and is suddenly gone. Insomnia, aches and pains, memory issues - it's stunning how much better it can be. :-D

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Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thanks in advance!

Lots of reading.....there's great help here! Take a look at my blog. Not sure what you are dealing with but the info might help. Best to you! I found it was a matter of experimenting to find what worked.

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Dieticians won't do much good. Most times they are out of date on information and some insurance policys won't cover them.

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Dieticians won't do much good. Most times they are out of date on information and some insurance policys won't cover them.

Totally agree with this and all the good advice above. I'd also add that even doctors sometimes aren't in the know, but dangerously think they are. Best bet is to take responsibility for what happens to you from the get go.

Didn't thoroughly read all the posts above so it may have been mentioned, but also keep in mind that if you are still symptomatic after a few weeks off gluten, consider other culprits, the most common seem to be dairy and soy, and unlike gluten, those latter items quite possibly could be reintroduced at a later date. Listen to your body. It wants you to be healthy!

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Thanks for all the advice! Your input is very appreciated! :) :)

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There are such things as celiac informed and educated dieticians. Please don't listen to those who just dismiss every single dietician because personal prejudice. The hospital dietician who counseled me was the most knowledgeable person on celiac I have run across - including my doctor. I was able to ask her any question about celiac and she had answers backed up by scholarly research articals in medical journals. What I wouldn't give 100% credence to is heresay you read on the internet. Do your own research from the experts in your own community.

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There are such things as celiac informed and educated dieticians. Please don't listen to those who just dismiss every single dietician because personal prejudice. The hospital dietician who counseled me was the most knowledgeable person on celiac I have run across - including my doctor. I was able to ask her any question about celiac and she had answers backed up by scholarly research articals in medical journals. What I wouldn't give 100% credence to is heresay you read on the internet. Do your own research from the experts in your own community.

I so agree. My dietitian is brilliant - she creates awareness in the community, attends all the celiac association meetings, keeps updated constantly...she is who has given me the most information out of anyone (with the exception of this site). She is akin to a detective like those of us who live with celiac or gluten intolerance.

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There are such things as celiac informed and educated dieticians. Please don't listen to those who just dismiss every single dietician because personal prejudice. The hospital dietician who counseled me was the most knowledgeable person on celiac I have run across - including my doctor. I was able to ask her any question about celiac and she had answers backed up by scholarly research articals in medical journals. What I wouldn't give 100% credence to is heresay you read on the internet. Do your own research from the experts in your own community.

You are so lucky to have found someone wonderful right out the gate. I had to kiss a few gluten-stupid frogs to find a professional competent in matters of gluten/casein/soy inolerance. If I would have listened to all the instructions given to me by dieticians and doctors before that, I'd still be very sick and struggling. I heard statements such as: "there is no such thing as gluten withdrawal", "you don't have celiac disease so you can't be gluten intolerant", and my personal favorite, "you can just give up gluten during the week and eat it on the weekends, that should be sufficient." Even though I ultimately found a doctor who does understand, it was this forum AND MY OWN BODY that I ended up listening to the most.

Hearing of your smart dietician gives me hope that the tide is turning. I just pray that the current focus on gluten lasts long enough to motivate awareness on the part of all professionals who counsel in these matters.

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Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thanks in advance!

It can be frustraing, and difficult, BUT, your body will let you know what is best for YOU! All of us are different, unique, and have our own ways to cope, and things that make us feel better. A dietician will tell you common sense, which is to eat things that are natural and pure, contain no gluten, and have no chance of cross contamination. Veggies, rice, lean meats, all of these things are good for everyone, but are perfect for us. Eggs, nuts, and dairy may cause problems with some, and others may tolerate the just fine. It's trickier to find hygiene products that aren't the culprit, but a little research will make you a pro in no time. Good luck!

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You are so lucky to have found someone wonderful right out the gate. I had to kiss a few gluten-stupid frogs to find a professional competent in matters of gluten/casein/soy inolerance. If I would have listened to all the instructions given to me by dieticians and doctors before that, I'd still be very sick and struggling. I heard statements such as: "there is no such thing as gluten withdrawal", "you don't have celiac disease so you can't be gluten intolerant", and my personal favorite, "you can just give up gluten during the week and eat it on the weekends, that should be sufficient." Even though I ultimately found a doctor who does understand, it was this forum AND MY OWN BODY that I ended up listening to the most.

Hearing of your smart dietician gives me hope that the tide is turning. I just pray that the current focus on gluten lasts long enough to motivate awareness on the part of all professionals who counsel in these matters.

You gave me a few giggles with your post...I know there are many that just don't understand - even professionals.

When I travel I notice that some states/cities are just more aware of celiac (restaurants, grocery stores, waiters, cooks, etc.). Kentucky (where I live) has a way to go although we do have our first gluten free cafe and bakery that opened a few months ago. I tend to frequent those restaurants that have a clear understanding of what gluten interolerant and cross-contamination mean - and there are a few.

My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

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As my son told me - dad, you don't have any issue. You can just eat Snicker's bars and orange soda!

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My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

Haha! I guess she thought that pita bread comes from the gluten free pita plant!!! Hysterical!

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As my son told me - dad, you don't have any issue. You can just eat Snicker's bars and orange soda!

So sweet! I guess he figured that covered all the food groups, including extra vitamin C in the soda.

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Hi all! so glad to have found this site! I am newly diagnosed and overwhelmed! So much information and changes! Any of you have tips of easy ways to dive into all this?

Thank

I'm new to this as well. Biopsy was last week so now I'm eating gluten free full time. It is a big pain but it's not the end of the world. Depending on your diet, going with a whole foods diet might be really helpful. It wasn't for me at all and I've found some of the endless suggestions for it from various sources kind of condescending since there is nothing at all wrong with preferring safe substitutes for food if that's what works for you. Anyway, it's definitely something to consider.

I started wandering the aisles of my grocery stores checking things I eat for gluten. There was a lot of swearing under my breath but over time, I'm adjusting and I'm more excited about safe options than I am angry about things I miss.

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My favorite dining experience was the greek salad I ordered a few months ago - I told the young waitress that I couldn't have any wheat and therefore didn't want any croutons on my salad...and the croutons were left off but piles of pita bread covered the whole top of the salad...I gave up on that restaurant - their waitresses are absolutely clueless even when you try explaining (their eyes glaze over actually).

This exact thing happened to me a couple weeks ago. I decided to just chance picking the pita triangles off... not the best idea. Oh well. It happens.

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Great advice Cattknap::::

Unlike many on this forum, I am not unhappy, overwhelmed, or feel like my life is over because I have celiac - I find it very easy to live a gluten free life...don't have a big pity party over this - living gluten free is completely doable and delicious and with the help of your doctor and/or nutritionist, you will eventually get healthy and feel great. I noticed a difference within a month - I feel great now - gluten free for almost a year now.

Important: Don't let your celiac disease define every facet of your life - live your life, be happy, don't focus on what you can't eat - instead look at all the things you can eat (tons of things!). Please don't expect all your friends or family to cater to you or have pity on you or prepare food that you can eat because you have celiac - your celiac is your responsibility only - deal with it intelligently and quietly and you will have good relations with those around you. You'll get used to it in no time at all - really you will. Good luck to you!

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Great advice Cattknap::::

Unlike many on this forum, I am not unhappy, overwhelmed, or feel like my life is over because I have celiac - I find it very easy to live a gluten free life...don't have a big pity party over this - living gluten free is completely doable and delicious and with the help of your doctor and/or nutritionist, you will eventually get healthy and feel great. I noticed a difference within a month - I feel great now - gluten free for almost a year now.

Important: Don't let your celiac disease define every facet of your life - live your life, be happy, don't focus on what you can't eat - instead look at all the things you can eat (tons of things!). Please don't expect all your friends or family to cater to you or have pity on you or prepare food that you can eat because you have celiac - your celiac is your responsibility only - deal with it intelligently and quietly and you will have good relations with those around you. You'll get used to it in no time at all - really you will. Good luck to you!

Sharon,

This post confuses me as you have started a topic saying you have had symptoms for 6 months and wondering how to get diagnosed.

What's the story?

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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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