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I'm So Excited!
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Especially for those who have had a long recovery:

I've been strictly gluten-free for two years and five months. When I went gluten-free I went from mostly bed-ridden to sort of being able to function. For the next two years I got a little better, but still had debilitating fatigue. I had to stop working and have family members care for me. We all have been eating a very healthy diet (gluten-free house), and started to drink more fresh juice and veggie smoothies. Tried a few elimination diets and settled on corn-free as well. I stopped eating *most* processed foods, but still was cooking with Bob's Red Mill flours and a few other products like tinkyada pasta. I still wasn't improving. It was as it there was a ceiling on my getting better. I have been in physical therapy (since my body was pretty wrecked from the whole ordeal), but not able to make process since my fatigue was so persistent. I've looked into MANY of the healing diets so many here speak of, and....

...I found something that seems to be working for me! I have been completely grain-free (and pseudo-grain-free...ie buckwheat, etc) now for 44 days. I also go easy on beans and potatoes, though I still eat those at times. In this time my stamina has already increased dramatically. I've been able to cook, load and unload the car, concentrate to do errands and pay bills, play frisbee and even dance. Not all the time, but more often. I went on a hike yesterday long enough to get sunburned (duh! skin hasn't seen that much sun for a while). I still need to be careful with my activities since my muscles haven't caught up to my energy level and my back and hips are pretty messed up (read: painfully slips out of place) I will be increasing my physical therapy dramatically starting in about two weeks, and am hopeful that my muscles will actually build now! Fingers are crossed, wish me luck!

I just wanted to share my excitement and give some encouragement to those who are still trying to find their personal magic combination of what to eat and what to avoid. I've gotten a lot of inspiration and recipes from the raw diet people and the paleo (caveman) diet people.

=) =) =) =)

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That is so cool! :D I'm so glad that you have found something that works for you! I can only imagine how frustrated you have felt till now. Fortunately, I haven't had quite so severe a reaction to gluten that you and some of the other posters here have had. But it sure feels good to start going toward 100% doesn't it? Congrats and keep it up!

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Congrats! You may already know this but i had to comment that Bob's Red Mill products give several others on this board trouble. We have concluded that it is because we are also sensitive to all oats (even certified gluten-free oats) and since BRM gluten-free products are made in the same facility as gluten-free oats we get sick from all Bob's Red Mill gluten-free products. Might just be somehtign for you to think about. You may just be super sensitive to cc. Keep up the good work of eating clean and healthy though! It's great to feel good again isn't it?

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Congrats! You may already know this but i had to comment that Bob's Red Mill products give several others on this board trouble. We have concluded that it is because we are also sensitive to all oats (even certified gluten-free oats) and since BRM gluten-free products are made in the same facility as gluten-free oats we get sick from all Bob's Red Mill gluten-free products. Might just be somehtign for you to think about. You may just be super sensitive to cc. Keep up the good work of eating clean and healthy though! It's great to feel good again isn't it?

Yeah... I saw my GI doc a couple weeks in and the possibility of it being oats was her comment too... though I'm not 100% sure she gets it. I wished she would've suggested it a year ago. =b

Whatever it is, this is working. I just don't know if I'll be able to start introducing things back in to see or if I'm going to be life-long grain free. I of course can live without them, I just wouldn't want to miss out on rice and buckwheat for the rest of my life if I don't have to!

I definitely think I'm one of the super-sensitives, though.

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Congrats! I'm so happy to hear you have found what works!

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      I went gluten free & never looked back! I have dh, the celiac rash. That makes it pretty darn easy to go gluten-free the moment you figure it out. I was not about to continue eating gluten for even one more day just so the medical establishment would be satisfied in my dx. There was not a moment of doubt in my mind that I had dh & therefore celiac. As it turns out, weirder than weirder than weird and the odds I can't even begin to imagine.... I have since, by sheer accident, had 2 docs officially dx me. Is that crazy or what??!! I did not go in asking for a dx nor even hoping for one. Frankly, I just plain didn't care what they thought. The medical community has failed me numerous times throughout my life so I don't have the highest regard for them. You are 54, I was 54 when I figured mine out. I have no kids so did not need to consider them in my decision not to go for an official dx. My parents had already passed away so that was not an issue. My brother had passed away so that was not an issue either. I did contact my nephew & tell him to let my sister know so she could get tested. So I have done my duty by her & she's an adult and a nurse & can make her own decisions. I do urge people to go for an official dx whenever possible, especially when they have kids or other 1st degree family members. If it's doable for them I think they should make a good effort at it. Also, there are certain people who express they don't think they can stick to the diet without the official dx. I think those people should pursue a dx with all their might. I have never had the slightest problem sticking religiously to gluten free eating. I have never doubted myself. I know you have tired HARD! Super, super HARD. I commend you for your dogged pursuit. I would not, could not blame you for giving it all up & just going gluten free this instant. That is a choice only you can make but I fully support whatever decision you make.
    • Gluten does WHAT to the brain?
      Your brother sounds like mine, Squirmy.  He was a Type 1 diabetic and had flaming celiac symptoms to boot but his docs always, always blamed his diabetes on everything.  He lived in the country and the docs in his state just were so far from being Celiac savvy.  I doubt they ever diagnosed one. His health was failing so badly that in the end, with the 3 MONTHS of non-stop diarrhea going on, he became so dehydrated that he had a heart attack and died last August 4th. His biggest mistake was trusting these idiots completely.  I think his brain was so messed up and confused that he just couldn't understand what I was trying to tell him.......that good ole brain fog.  He did what celiac's may do when left untreated for years and years.....they slowly fail and then die.  It still is extremely painful for me to think about because I was close to him.  I still see many people in my life that I think have it because of their extreme symptoms. Listening to them complain that the doctors aren't helping them. Try suing them for malpractice too......it would be too hard to prove. And then we have those who know there is something very wrong but won't give up wheat bread because that is unfathomable to them.  This disease can drive anyone crazy, for many different reasons. 
    • I'm actually scared to go to the doctor and could use some advice
      Good for you, Elle!  Now you can figure out the problems and feel better.  We are all interested with how things go for you so please do update us when you can. 
    • I'm actually scared to go to the doctor and could use some advice
      Update: GP wrote back and said she can do a Celiac test without sending me to a gastro, so I'll make an appointment with her. And thanks to you guys, I will print out and take the description of a full panel so I can try to avoid these partial tests I've read about other folks getting. I will update, because I know when I read threads like this I always wonder how it all turned out! :-) Thanks again! P.S. I know she can't do the biopsy, but at least she can do phase I.
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