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ScarlettsMommy

Just Diagnosed And Feel Like Its The End Of The World!

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I understand, trust me, I understand.

I was diagnosed in March. I was a famed cook and baker among my friends. I also felt like sh%t because of the celiac. Let me give you some hard advice-- my best friend, who is a doctor (pediatrician) but who also has celiac gave me this advice, and it was the best advice I got, although it was like having a pail of cold water dumped on me. And I know some people would not agree with me, because it is radical advice, and it doesn't work for everyone, but just hear me out.

Give up on all processed foods. Go paleo (google paleolithic diet)

I cook now only with veggies, fruits, nuts, meat, rice and a few legumes (which isn't true paleo, but cutting out the lentils and beans seemed like too much for me.) It seems hard, but its not, as most meals can be modified to fit this model. I do still eat gluten-free pasta as that was the one processed food I couldn't give up on. If I want a sweet, I make gluten-free cookies (mostly macaroons, which are gluten-free anyway- no modifications needed). Otherwise I tend to eat fruit as a snack. I don't mess with the gluten-free "replacement foods." And as I am lactose intolerant, cutting out dairy was never an issue. I haven't had real dairy since I was 8 years old. I will also be honest- every once in a while I buy a bag of potato chips or a small box of bakery-made gluten-free cookies. I am not super strict but I regard these things as treats.

Like I said, it seems radical, but its not hard. You can have a steak and baked potato with green beans for dinner. Easy to make. I often make fish in a spicy tomato sauce and serve over rice. A nice spinach salad with a chicken breast. Chicken and rice soup. Turkey chili. You can still eat yummy, hearty food. It does require effort and learning to cook differently, but let me tell you something...

When I was diagnosed in March I weighed 178 lbs. Was somewhere around a size 14, felt slow, sick, had sensation problems in my hands, vertigo and extreme fatigue. Spent much of my time on the couch, when I wasn't at work.

Now I weigh 138 lbs. That's right, I dropped 40 lbs without trying- I didn't start a workout schedule or anything like that. (I am 32, and was thin most of my life but ballooned in the last five years.) Have energy- can work with more focus, can take dog on long walks and I feel (and look great). Am a size 8. My students have commented on how good I look (one last night at an event told me I looked "so happy, healthy and fabulous.") I feel so much better about myself, and just today I went though my closet and boxed all the clothes that are too big (which was a lot of clothes.) If I stay this way for a year, I will take them to a resale shop (as they are mostly good suits) and sell the lot.

I didn't do this to lose weight. I did this to get better, and I am better. Its a bit of a scary road to go down and if you do it, it works to ease into it (initially I did eat a lot of gluten-free processed foods and so forth to make the transition easier, but I eventually discovered that I just didn't like them so I took my friend's advice and gave up.) And it is easier for me as I live alone, so I don't have to watch other people eat, or deal with the kitchen/sharing issues.

It was the best decision I ever made. It might be too extreme for you, or perhaps something you may want to try later down the line-- its not right for everyone, but I just wanted to throw it out there. Giving up almost all processed foods (yes I do still use gluten-free chicken broth, or tomato sauce, and Schar pasta but not much beyond that.) made me approach food in a whole new way. It was like wiping the slate clean.

Good luck with adjusting to the diet-- and its okay to be mad and angry-- I was. But I love the new gluten-free/Paleo me, I feel like I got a gift-- I found out before I became diabetic (like half my family) or sick with some other autoimmune disease and after being angry I approached it like life was a clean slate, or the restart button, and the new me feels so much better!

Remember that- as long as you stay away from the gluten you will feel good. And because you feel good you will stop craving it (after a while- that takes a while) and no longer miss it. Best wishes!

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After gluten free, I have had A LOT less cravings for carbs. I am really convinced that the gluten makes you crave gluten. My cravings for any foods have gone down so much.

I and my daughter can totally agree with this. It bewilders my family and friends when I say I don't crave breads or gluten anymore. They think I'm just saying that because I have no choice. Well, whatever the reason my body doesn't want it anymore. The only thing I miss about my pre-Celiac life was the ease in which I could go about my life. Now, I have to analyze everything about what I and my daughter eat and do. More prep to go out, more research, not spur-of-the-moment.

And I also agree with the poster that said this is the hardest time of the year - holidays are totally food driven! You will find your new normal - it will take a while and you will go through the stages of grief, but you will get there. I have been gluten-free for 1.5 years and I am finally at peace with the entire thing.


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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What I did when I was diagnosed was focus on what I could eat! It was several months before I tried any processed foods made gluten free. I ate all the vegetables, meats, and fruits I wanted. months later I tried my first gluten-free beer "Redbridge" It tasted sooooo good! Then I tried a gluten-free pizza from a local parlor in a very small town; however, the owner offered the gluten-free pizza because his daughter had Celiac. The pizza was awesome. It had been months. I purchased some gluten-free pasta, tried rice and corn and a pasta that was a mixture of rice/corn. I prefer the corn pasta, especially the spaghetti! It is better than the regular to me; feels like you are actually eating something of substance. I do prefer Bob's Red Mill mixes for everything. I found the pizza crust is enough to make 2 for my husband & I; make one for dinner and make another and freeze. Perfect for those nights you don't feel like cooking. I just ordered a bunch of stuff from (Company Name Removed - They Spammed This Forum and are Banned)...especially love a creamy tomato soup...just pour and heat! Very good, never thought I would say this, but better than Campbell's. Also, check ingredients at the store you will be surprised how much is naturally gluten-free. I have adjusted so well, I need to lose 20 lbs...a year and a half ago, I was 15 lbs underweight...I have other residual effects to my body, but I am sooo much better!

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I cheat a lot, because I am an idiot and stubborn. That said, learning that I was celiac was one of the best days of my life. I finally had an answer for all the nausea, vomiting, dizziness, chest pain, possibly sinusitis, and a host of other issues. I literally vomited from when I got up till when i went to bed. Thank goodness i worked from home. I rarely left the house for the year before diagnosis due to such severe symptoms. I honestly expected to die. I remember when I started improving after day one of gluten-free and I literally got down on my hands and knees and prayed that I was celiac. I was so excited to finally have an answer and to finally have a way to get better. Being celiac was a miracle from God. I bet you a lot of others on here feel that way as well. Do not get me wrong, I wish I was not celiac and the issues were gone, but to finally have control of my life was a true blessing.

Yeah, you will miss some foods but as much as I cheat, I have to say that rarely is it worth it. And it is never worth it if later in life I cause issues for myself.

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Like you, I was just diagnosed earlier this week and it is extremely overwhelming. I just keep trying to remind myself that it is a race, not a sprint. Just as Rome wasn't built in a day, I won't be 100% gluten free in a day. You may have to start small: start thinking about what you are eating, what has gluten in it, and what you can substitute. After my diagnosis I went and bought some gluten free cookies and crackers in addition to lots of fresh produce, ect so I could still feel "normal." I tried the Amy's gluten free pizza yesterday and it was fantastic- I liked it better than that brand's "regular" pizza. I think I have had a somewhat easier time adjusting to the news because I was a vegetarian for 10 years (I just starting adding back fish, chicken and turkey a year ago) so I am used to being the oddball at the dinner table who eats something different or who asks lots of questions at a restaurant. When I switched to being a vegetarian I cleaned out my fridge and pantry of anything I couldn't have and replaced it with things I could. It's frustrating if you are hungry and go to the cabinet and there's nothing in there- makes it too easy to fall off the wagon. But, if your fridge and pantry (even just your own shelf) is stocked with things you can eat then you don't feel so deprived and it's much easier to stick to.

The best thing you can do for yourself is re-frame the issue in your mind. It's not about what you are losing but what you are gaining. So much of our struggles are defined by our thoughts. This was not the last week that I was able to eat things that I love, rather, the beginning of being healthier and feeling better! Yes, I too will mourn cheesecake so I will just have to find a way to make a gluten free version.

Hang in there!

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You have already received such good advise that the only thing I can do is reiterate that "It DOES get easier".

Don't feel bad if your family refuses to change their diet to a gluten-free one. A metaphor I use often is "If you were in a wheelchair, would you feel bad that they still walked around you?"

Fortunately, for most of us, celiac does not put us in a wheelchair. It is a largely "fixable" diagnosis. However, your husband being willing to go gluten-free at home is wonderful, simply because it will make mealtime much easier when you have your own home again. Most of my family's (and even guest's) meals are gluten-free, and they don't really notice. Very seldom do I have to make a separate meal (or even part of a meal) for myself.

I was glad to hear that food is a passion. My husband and I both love to cook, and we find that cooking gluten-free has broadened our horizons, not shut doors. It has forced us to look a little bit harder and try a few more things. Maybe,you can offer to plan and cook a certain number of meals for the whole house each week, and make sure that those meals are gluten-free. The worst that can happen is you get a few meals a week that you know you can eat with the family. The best that can happen is the rest of the family will realize that adapting to gluten-free cooking isn't really has hard as they thought.

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You have already received such good advise that the only thing I can do is reiterate that "It DOES get easier".

Don't feel bad if your family refuses to change their diet to a gluten-free one. A metaphor I use often is "If you were in a wheelchair, would you feel bad that they still walked around you?"

Fortunately, for most of us, celiac does not put us in a wheelchair. It is a largely "fixable" diagnosis. However, your husband being willing to go gluten-free at home is wonderful, simply because it will make mealtime much easier when you have your own home again. Most of my family's (and even guest's) meals are gluten-free, and they don't really notice. Very seldom do I have to make a separate meal (or even part of a meal) for myself.

I was glad to hear that food is a passion. My husband and I both love to cook, and we find that cooking gluten-free has broadened our horizons, not shut doors. It has forced us to look a little bit harder and try a few more things. Maybe,you can offer to plan and cook a certain number of meals for the whole house each week, and make sure that those meals are gluten-free. The worst that can happen is you get a few meals a week that you know you can eat with the family. The best that can happen is the rest of the family will realize that adapting to gluten-free cooking isn't really has hard as they thought.

I like your analogy of the wheelchair. This past week a co-worker asked if I had tried the new chocolate-covered bugles snack. Most people that I work with know that I have to eat gluten free and as she asked she remembered that I couldn't have the bugles and apologized for asking! I told her it was no big deal. She then said she was so amazed at my commitment and willpower not to eat 'toxic' food. I looked at her, smiled and said, 'Jess, if there was a knife on the table, would you tell me that you admired my willpower not to stab that knife into my thigh? Eating gluten hurts me. There is no willpower involved, only common sense."

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