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Scared 2-b Gluten Free
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I was diagnosed with celiac disease 2 days ago. Positive blood tests and also opted to have the endoscopy done, which my doctor left up to me.

My first reaction to be diagnosed was frustration. I have been complaining of the same symptoms for 3 years. I switched doctors 4 times trying to find an answer to my pain. My first doctor dx me with bercidis due to the joint pain in my hips I had almost everyday. That was great! I took my medication faithfully (and I hate taking medication even for headaches). That didn't help. I was getting nowhere and getting more and more fatigued and more and more stomach aches after eating, more gas, and starting to have diarreah. I was not getting the answers I felt I needed so I switched doc.

Doctor # 2 dx me with irritable bowel syndrome and lack of sleep. Thats right gave me ambien to sleep and meds for IBS. Sent me to physical therapy for my severe hip pain occuring everday. When the PT did not work she advised I see a Chiropractor. Well that was a great adjustment and I still go on occasion but my pain was still there. My hips aching more than ever!! Then I ended up in the ER with pancreatitis. That was 1 year ago. The attending ER doc along with my own physician could not find a reason for my pancreatits. Nothing. They sent me to an abdominal surgeon who took my gallblader out. No stones, but "appeared to be diseased". I was also dx during that time with reflux. Well, that was it. My gallbladder had been making me sick. Sweet I will finally feel "normal again" - not!

In March after literally being in bed for a week so stiff and sore all- nearly every joint, sore muscles, muscle spasms for no reason, fatigued, depressed and anxious all in the same breath, I called my doc to get in. She was not able to see me for 3 weeks. I switched again.

Doc # 3 dx me with Fibromyalgia. Simple as that. Hello, goodbye! You have fibromyalgia. Here are some #s to call to see a specialist. Well one specialist no longer accepted pts but referred me out to someone else who was a great fibromyalgia specialist. I saw him right away and he was not a fibromyalgia specialist, they gave me the wrong name. I sat there and talked with him about my symptoms for 2 hours. He looked at me and said so, have you been tested for celiac disease? 'CAUSE THATS WHAT IT IS!!! Finally. After all this time I have been diagnosed. My prayers have been answered. I just don't know why they didnt do that simple lab test first!! :angry::angry::angry:

So now what? I'm a single 29yo female. I rearely cook. EVER! I don't even know where to begin. I eat out all the time. Love to go restaurant hopping and try new gourmet foods or hole in the wall cafes in little cities accross the country. Love it! It's one of my passions in life - really! So, now am I going to be confined to my kitchen? Slaving over a stove? Ordering food off the internet to my house? Is this what my life is going to be like now? I'm horrified to think that. HORRIFIED.

Where do I begin? I have known for 2 days and am eating non stop. 24-7 shoveling forbiden food in my mouth. Am I really going to feel better? Am I going to stop hurting? Will my bloated stomach go away? How can someone be malnurished (thats what my doctor told me I was) and weigh 147 #s at 5"6??

PLEASE HELP ME IM SCARED OF MY LIFE CHANGING!!!!!!!!!!

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I am malnourished too but taking one look and me and you wouldnt be able to tell. I am one of the slightly overweight celiacs.

Anyway, you will feel better but it will take some time. It has been about 6 weeks for me and i feel fantastic. I take iron supplements and am finally getting all of my energy back. No more crippling abdominal pain for me and no bathroom problems. The first weeks were a constant struggle but you can break through it and things will definitely start looking up. It wont happen overnight though. Also, when you cut out gluten, consider cutting out dairy as well to start. I found out that i am also lactose intolerant.

I dont cook either. The best thing i have found is a George Foreman grill that i can plug in and cook on. I buy a lot of chicken breasts, lean steak, and ground turkey burgers and then throw them on there. As for veggies, i buy a lot of frozen and then just microwave them. Its all really easy to do.

Check out the dining out forums on this site, it helped me so much when i was starting out. I have been to a number of restaurants and not gotten sick, it can be done.

Good luck with this, things will get better. We are all in this together.

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I know how you feel. I've been gluten-free for just over a month now. At first I totally freaked out thinking I wouldn't be able to eat anything. I really don't like to cook, I love to eat out and my biggest problem was that we love to travel.

I've just been forcing myself to cook more, and I get food from www.grandmaferdons.com which is driving distance from my house. I have found a couple places around town that I can eat out. So for now, things are stable.

I still have a problem with the travel thing though. Am I going to be able to walk into a restaurant in Morocco or Mongolia and be able to get something to eat? We had both of these trips planned within the next 2 years, but now I'm not sure what we are going to do.

My best advice would be to just start small. Plan your meals for a few days at a time and don't worry about what you can and cannot do. I'm finding that if I really want something to work out, I can somehow find a way for it. Once you get used to the diet it doesn't seem so daunting.

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Also, once you start seeing some results it will all seem worth it. A month ago I was ready to claw my own skin off because of itching from DH, and now it is almost gone. It has given me a ton more willpower.

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It may seem overwhelming at first since you are not sure of what you can and can't have. It's not as overwhelming as it seems. It definitely gets easier with time.

There is great info on here about some wonderful products we can have.

There is also a forbidden and safe food list which you should take a look at...it will help as a guideline for beginning. http://www.celiac.com/st_main.html?p_catid=12

Other things you are going to need to check are things like lipstick and things you put on your hands, face, and head because they have a high chance of entering your mouth.

This site will help you out tremendously so you can find the brands you can use very quickly.

It can take a while for symptoms to go away...mine took 3 months to get alot better and another few to get back to normal...but people vary. The diet is definitely worth it..if you ignore it your chances of things like cancer go up 40-100 times and life expectancy decreases by about 10 years.

There are foods that are just as good that we can eat and they won't hurt us...

By the way I was malnourished as well...I lost weight with celiac but some people gain weight and some people stay normal size. Some people get no symptoms. Nevertheless the gluten still does damage to the body and then it does not allow the nutrients to be absorbed.

If you have any questions just ask...and feel free to contact me anytime if you need some help :D

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Count me as one who's gained weight! Ugh!

Eating out will be a challenge... especially if you're not a cook and don't know how things are made.

But eating at home can be easier. Just cruise around this site and read lots of different posts. Folks here have great ideas and have done so much of the work FOR us! There are even lots of convenience type foods that we can still have.

Think about learning to cook too! You can start your own gourmet club!

Hey frenchiemama... I wanna grab all those little faces and stick in my pockets!!!

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Oh sweetie, I know how you feel. I was in your same situation a few months ago. I am about your age, and all throughout college we went restaurant hopping to all the "holes in the wall" and looked for any ethnic food rather than eat another hamburger. But, I'm getting used to this Celiac thing, and once you start to feel a little better...believe me, you'll be glad you made the sacrifice. ;)

It actually gets to be "routine" after a few months...it doesn't even feel like a burden. People on this site are great. They will talk you through it.

And as far as cooking goes...hee hee...I don't cook either. Well, let me rephrase that, I didn't used to cook either, but I'm getting better. :rolleyes: Actually, I don't really enjoy it that much, but I'm learning all kind of easy dishes and I'm actually getting kind of creative...I try to make things that take about 20 minutes or less. :)

Well, good luck to you. Welcome to the forum! -Julie B)

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I don't know whether this will make you feel better or not, but neither my wife or I were fond of cooking, we weren't particularly good at it, and since we both worked we spent a lot of time in restaurants.

Once both of our daughters were diagnosed, that all quickly changed. We really don't enjoy restaurants anymore... it's just too much work and too scary. We're both getting a lot better at cooking, and I rather enjoy it... expecially since I know it's for my girls. I'm learning more every day and might even take some classes.

Also, the reduction in restaurant costs helps defer the higher cost of gluten-free food.

Good luck!

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One of the best things I think for coping is to discipline yourself to take it one day at a time. Rather than thinking "what will i eat for the rest of my life?" ask "what will i eat today." Granted, everyone has moments of being overwhelmed, and that is totally valid and okay! You'll have moments like those even a while from now. But I think it can help to focus on one day or one meal at a time. No worries if you don't cook. You can still do lots of things like pick up premixed bags of salad and veggies at the grocery store, precooked bags of rice, beans etc, frozen veggies, fresh fruit and veggies and certain tv dinners like Amy's (i eat them a lot). Go here and ck out the many pages of gluten-free meals they offer, very good: http://www.amys.com/products/search_result...rm_glutenfree=1

I am trying to find a link to the list, but there are quite a few restaurants with gluten free menus: Outback, PF Changs, Carrabba's, Ted's Montana Grill are the first ones that come to mind. Plus the fast food places list which items are gluten-free on their menu. Ck with local restuarants too, get a restaurant card, learn ingredients and you will find some restaurants that will work with you to make a gluten-free meal. As time goes on and you become more knowledgeable and acclimated to the diet, you will gain some of your flexibility with restaurants back.

Can someone post a link to the delphi restaurant list for Britt? I believe that's where I got mine--having computer issues right now...

Good luck and welcome to the board. You will definitely find help and encouragement here. I sure have !! :)

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Oh, and there is also the Thai Kitchen dinners, they have a ton of gluten-free stirfries with rice noodles etc. Go here: http://www.thaikitchen.com/infocenter.html

and if you go here, to the Gluten-Free Pantry, they have some gluten-free "hamburger helper" type meals where you add some meat, throw in a pan and simmer: http://www.glutenfreepantry.com/glu/showpr...jectGroup_ID=74

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So now what? I'm a single 29yo female. I rearely cook. EVER! I don't even know where to begin. I eat out all the time. Love to go restaurant hopping and try new gourmet foods or hole in the wall cafes in little cities accross the country. Love it! It's one of my passions in life - really! So, now am I going to be confined to my kitchen? Slaving over a stove? Ordering food off the internet to my house? Is this what my life is going to be like now? I'm horrified to think that. HORRIFIED.

Where do I begin? I have known for 2 days and am eating non stop. 24-7 shoveling forbiden food in my mouth. Am I really going to feel better? Am I going to stop hurting? Will my bloated stomach go away? How can someone be malnurished (thats what my doctor told me I was) and weigh 147 #s at 5"6??

PLEASE HELP ME IM SCARED OF MY LIFE CHANGING!!!!!!!!!!

Yes, when you go gluten-free you really will feel better (though it may not be overnight). Yes, you should stop hurting. Yes, your bloated stomach should settle down. And you can be malnourished at normal weight if you're not absorbing enough of ALL the nutrients your body needs.

I know it can seem scary at first - and I can't really imagine how scary it is if you never cook. But all change can be scary. It's important to remember that it's scary because you don't know what it will be like, and our imaginations often come up with the worst, rather than the best. If you work towards the change giving you the best, however, that's what you'll get.

You note that you love trying new gourmet foods or hole in the wall cafes - most of them make their stuff from scratch. So not only do you have a chance at asking about a few of those dishes being gluten-free at the locations themselves, but you can try making them in your own kitchen.

I'm not sure how the phrase "slaving over a stove" got equated with cooking, but you can cook all your meals from scratch with exactly as much time over a stove as you want to. Cooking is a skill, like driving, that you learn. You can take classes, or you can do it on your own. You can read books or buy videos. But mostly you just have to practice. And what's important is not that you practice the way other people "drive" (cook), but you practice the way YOU "drive" (cook). Not up for slaving over the stove all the time, don't make gluten-free ravioli from scratch (staring with the flour to make the dough). Make something that's faster, like a spicy, colorful stir-fry (20 minutes), seared ahi with sauteed vegetables (20 minutes), a chicken salad (10 minutes, if you've got leftover chicken), chicken-rice soup (30 minutes (with white rice)), or a vegetable pilaf with quinoa (30 minutes). Not that all of those things are made with a handful of fresh ingredients you can get from the produce and meat counters at any grocery store. (At least, in SoCal, you can also get quinoa in most regular grocery stores.)

A lot of people noted to give it some time - they couldn't be more right. This is a big change. It's one that hits at the very basics of life - eating. It's scary, it's big, and it can seem really overwhelming. But moving away from home is also a pretty huge change, and you've done that (probably?! I hope I'm not putting my foot in my mouth there!). Read, learn, practice, and keep trying. It's worth it to significantly reduce your risk of cancers, osteoporosis, anemia, and other autoimmune conditions and to increase your expected lifespan by 10 to 20 years.

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Wow. I was running some errands today wondering if my sob story would even get read. You guys are great! All the input so far is incredible!!! In one day, just one day, I have learned restaurants (and PF Chengs is one of my favs) are now starting to carry gluten free menu items. I have choices for food! I really don't have to cook ALL that often!! WOO HOO!! :D Just a couple of you have made my day a whole lot brighter.

Thank You!! Thank You!!

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But moving away from home is also a pretty huge change, and you've done that (probably?! I hope I'm not putting my foot in my mouth there!).

Tarnalberry -

Ha ha yes im out of the parents house. Have been for quite some time now!! :lol:

Thank you for your suggestions. I think I'm going to try making seared ahi with sauteed vegetables first. Wow that sounds great!!!

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For anybody that lives in the Chicago area or close to a Woodman's, you are in luck. They have an entire gluten free section, with more than my local health food store and it's cheap! Shortly after eliminating gluten from my life I lost my job, and didn't think I could afford to eat all the pricey stuff at the health food store. They have all the flours, boxes of pizza crust "hamburger helper" bread, pasta and more. Sorry I was just so excited when I walked out of there knowing I was going to go home and make a pizza I could afford, I just had to pass it on

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I'm so glad you found a great place to shop! Doesn't it really feel great to find a gem of a store? :D I always feel super good all day when I find something new, and affordable :rolleyes:

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Cooking is a skill, like driving, that you learn. You can take classes, or you can do it on your own.

I've tried to find cooking classes around here and I never could find a class just on learning how to cook. It was always something specialized, like vegetarian cooking or Indian food. I just want to learn how to cook in general to begin with!

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Mytummyhurts: It's easy once you 'experiment' on your own.

Get some gluten-free soy sauce and make yourself some stir fry with chicken, beef or vegetables.

You can't muck it up.

Same goes for curry sauces...gluten-free of course, do what you'd with the stir fry stuff but instead of gluten-free soy sauce, use gluten-free curry sauce, from Pataks or Sharwoods.

Good Luck and Happy Cooking.

Scotia

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another thing about cooking is don't be afraid to be creative and try something new... for example, last night I had NO CLUE what I was going to make for dinner. I opened up my freezer and found some chicken breasts... defrosted them in the microwave then in a skillet on the top of the stove I cooked the chicken in about 1 inch of water flipping til white on both sides, put a lid on and let it cook for aboutt 20 minutes. Then I thought... hmmmmm I need a vegetable with this, what do I have? Back to my trusty freezer for some chopped broccoli... I opened the pack of broccoli and poured it in with the chicken and water, added just a little more water and put the lid back on. Cooked this for another 10 minutes and then I'm thinking... this probably needs something else... I sprinkled some salt, pepper, and garlic powder over the broccoli and chicken, and as I'm looking at it I thought, this needs a sauce, what do I have? Into the fridge I go... OH LOOKEY half a box of Velveeta cheese! In a separate pan I chopped up the Velveeta and added about 1/4 cup of milk and cooked on a low heat stirring constantly until it was melted... once it was melted I removed it from heat... Took the lid off the broccoli and chicken, drained the water out using a collander then put it back in the pan and poured my cheese sauce over it. Put the lid back on and thought... hmmmmmm I need a side dish... what do I have??? Into the pantry I went, found a box of Barbara's instant mashed potatoes... quickly made up a batch of those and called it dinner! I put the cheese sauce with the broccoli in it over the mashed potatoes... OMG! YUM!

My husband, who is NOT gluten-free claimed that this was the most yummy meal he's had in a long long time... I have to agree, it was delish and I really didn't plan anything... I just got creative with what I had. Sometimes the best meals are accidental!

If you want any hints on basic cooking techniques feel free to e-mail me at nisla@comcast.net

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Abby, don't rule out those classes - they'll still teach you how to cook! A lot of times classes like that need a draw, or at least a theme, so they'll start there. And, depending on where you live, there may be a lot of "hidden" resources that can be hard to find. (Turns out there's a cooking class occasionally one of our community centers near me.)

Alternatively, if you know anyone who's a decent cook, ask them for their help. I learned a lot from my dad when I was young, but I learned even more from my mother-in-law - enough to get me in the kitchen experimenting. (Dare I say I'm now a better cook that she is? Well, I am more adventuresome, but that's just me. ;-) )

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I'm 24 yrs old and I've been gluten free for about a year. I felt the same way as you when I was diagnosed! My friends in college used to make fun of me because I LIVED off McDonalds! I didn't like to cook and loved to eat out! The night I was diagnosed I remember looking in my cabinet and crying. I had a can of peas for dinner that night. However, since then I have found a new passion...of all thing COOKING! It's almost like a challenge for me now to make that thing I'm craving and I find it so much more fun cooking gluten-free than I did with regular food. It took a while to obtain all the flours, cooking utensils, staple ingredients, etc. at my house, but once you have it all worked out it is much easier. My sugestion is to buy the Better Homes and Gardens cookbook. THere are a lot of simple recipes to get you started and it has all kinds of cooking tips. Just substitute rice flour for the regular flour in the recipes and it will turn out fine. That and buy a bread maker....you won't regret it! I know how bad this sucks....but trust me it gets better! Much better! I had a dinner party last night with all gluten eating guests. I made gluten-free sweet and sour pork, egg rolls and rice....it was a hit! Who would have thought....me cooking impressive food! You will too. Just give it a chance.

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Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
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