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Newbie And Overwhelmed


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#1 watata

 
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Posted 27 August 2011 - 09:50 PM

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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#2 alexsami

 
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Posted 28 August 2011 - 04:02 AM

im a newbie too and completely overwhelmed, frustrated
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#3 shadowicewolf

 
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Posted 28 August 2011 - 06:00 AM

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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#4 Cattknap

 
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Posted 28 August 2011 - 06:54 AM

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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#5 T.H.

 
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Posted 28 August 2011 - 09:22 AM

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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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#6 AVR1962

 
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Posted 28 August 2011 - 09:28 AM

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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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 shadowicewolf

 
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Posted 28 August 2011 - 09:28 AM

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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#8 kwylee

 
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Posted 28 August 2011 - 05:08 PM

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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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#9 watata

 
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Posted 28 August 2011 - 05:50 PM

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

 
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Posted 29 August 2011 - 04:03 PM

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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#11 love2travel

 
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Posted 29 August 2011 - 04:07 PM

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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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#12 kwylee

 
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Posted 30 August 2011 - 08:05 AM

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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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#13 PainfulSpaghetti

 
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Posted 30 August 2011 - 08:22 AM

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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#14 Cattknap

 
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Posted 30 August 2011 - 09:20 AM

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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#15 GuyC

 
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Posted 30 August 2011 - 09:28 AM

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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-Guy

gluten-free since 10/27/2010




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