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Getting Started On Gf Diet
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I have recently been diagnosed with Celiac Disease. I tried to do the diet and lasted only one month...got off of it and just can't make myself get back on. My only symptoms are anemia and bloating....just thoroughly depressed at the thought of having to do this the rest of my life. Does anyone have any suggestions to help me get back on track, change my thinking, perk up my sorry attitude? Even when I was trying, I found I had inadvertently eaten gluten....it's in EVERYTHING! (or so it seems). I don't mean to be so negative...but I am so very depressed about this. Any advice?

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Please re-consider your thoughts on the gluten-free diet.

I have had diarrhea, gas, bloating, anemia, hypothyroidism, for years now. I was first diagnosed with celiac in my early 20's (I am now 41). After a year on the diet, with no change, the dr changed his diagnosis to Crohn's. The symptoms have never gone away..... I have been living half my life with this. Finally, 1 1/2 years ago, the blood test and biopsy confirmed, indeed it was Celiac Disease. But to this day, I still have not gotten rid of the symptoms, after 1 1/2 years on the diet. The dr. at my last visit brought up the possibility of "Refractory Celiac Disease". This terrified me. It scared me enough to do much more research than I had previously done. I have since learned that three things I continued to have had gluten in them -- also, I was sharing the same toaster as the rest of my family, utensils, pots, pans, etc. etc., indicating strong liklihood of cross-contamination. So now I am looking at it as though there is still a chance that I was continuing to be contaminated, and I am starting from scratch again. Of course, the alternative is accepting that it is refractory, and if you do any research on this, the prognosis is not good. That should be enough to scare you back into the gluten-free diet. It really is difficult, I admit that. I am a working mother, four young children, I am the only one celiac. Life gets crazy and hectic sometimes, and the possibility of slips are highly likely..... but just giving up and not even bothering is just going to cause you much more difficulty down the road.

Hugs to you, and I hope you look up refractory and learn what this disease can do to you.....

Karen

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The diet isn't bad - once you get used to it. You've learned to cook WITH gluten for years and years, and if you rely on packaged products, learning to cook without it will certainly take longer than a few weeks. It's breaking a habit - and with all the tastiness in the gluten-filled products, it's a tough habit to break! :-)

Sticking with whole, unprocessed foods, and doing your own cooking makes it easier (not to mention healthier), and - depending on your cooking skills, which improve over time anyway - doesn't have to take much more time.

Don't forget that being depressed, and any tiredness that you may feel from the anemia, can also be connected to celiac, and sticking on the gluten-free diet for a while may help those symptoms as well. I know it's hard starting off... It looks like the whole world gets closed off to you, but with an effort, you start to realize how many things there are out there that you really can have. And there are some things you might never have tried before going gluten-free that you'll become aware of. (For me, it was rice cakes, millet (toasted, yum!), and quinoa.)

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I was also very depressed when I got my diagnosis. I wasn't super sick- very minor symptoms. I was diagnosed by a dermatologist, not a GI doctor. But my dermatologist told me the gluten wasn't only causing annoying blisters to my elbows, but destroying my intestine in the process! It is a very difficult lifestyle change, but it is necessary for your health. If you keep visiting this site, you'll discover you're not alone. It takes hard work, a lot of research, and understanding from others. Good Luck!!!!

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Dear dmckeithen,

Please don't get off this diet! When I first started on this diet I was depressed,

frustated, confused, and mad at the world and everyone in it. Then I researched,

and found out what could happen if I didn't stay on it. I have seen too many

people with cancer, as a nurse, and I said to myself, I can do this, all i have

to do is learn this diet, which I have, thanks to this board, and other research.

I started to keep a journal, kept foods very simple. If I had an accident then

I could trace it back to find the offender. I learned that I also could not tolerate

dairy or tomatoes. I ate mostly chicken, mashed potatoes, rice, applesauce,

bananas, herb tea. For breakfast I usually have herbal tea, banana, scrambled egg

whites, or Van's Waffles. I bought a few gluten-free crackers with Progresso chicken

and wild rice soup, peanut butter and crackers, steamed rice with chicken

and celery and green beans. In the evening my husband usually grills a

steak, pork chops or chicken and we have baked potatoes. At night we

have strawberries, blueberries, with soy milk and my husband will have

Cool Whip. What I am trying to say is keep it simple. I have been able tonight

to have a delicious spaghetti dinner with meatballs and i didn't get sick.

It took me 6mos to get here but I did it and I'm glad I did...and you can too!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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