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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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    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
    • I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 
    • I agree with all the advice you have been given.  It is excellent!   I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.   The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.    
    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
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