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MallysMama

I Can't Do It!

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Christine--

That phyllo recipe came with the rest of instructions to make baklava--I can post of the rest of it if you like, or I guess you can fill in your original recipe too. So glad that made your day!!!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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Jen!

I love to have the rest of the Baklava recipe if you have it! I am so excited about this! I have to admit that the process of making anything with dough usually involves me stomping and screaming, but when it turns out it is soooo worth it! :lol: I hope Brett likes phyllo dough as much as me, cuz he's gonna be getting a lot of it here pretty soon! :P

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coolio--I'll post the rest of it for ya on that same thread.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I'm sitting here eating Envirokids Amazon Frosted Flakes right out of the box. Just like I used to eat Tony the Tiger Frosted Flakes. Yummy. And they're really good. Because really, there's no reason in the world that Corn Flakes need gluten.

Raising a toddler is so hard. Especially if they're picky. The thing I read in an article written by a pediatrician once was that with toddlers, instead of trying to get them to have a balanced diet over the course of a day, shoot for a balanced diet over the course of a week. There were several months there where with my daughter, I had to consider ketchup a vegetable (hey, tomatoes are the first ingredient, and that was close enough for me...), because if I didnt' I would have driven myself insane. If your daughter will eat just one true thing out of each food group, then you're doing a great job.

I also heard of a trick where you take chopped spinach (originally the idea was to use creamed spinach baby food, but they added... gluten to it) and grind/chop it up really, super fine. Then you mix it into things like spaghetti sauce, meatballs/meatloaf/hamburger. If you can get it fine enough, they shouldn't even notice it. If they do, if it's really fine, you can say it's herbs or spices. Even if you can't get much of it past her before she notices, it's more spinach than most people can get into their toddler, ya know? So that's one food group down.

I know that when I get glutened, dealing with my two kids is as much as I can handle. If they're having a bad day too, it's awful.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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MACARONI AND CHEESE!!! That was my huge favorite. When I learned I couldn't have that or bread or OREO's ( :wub: ) I cried! LOL This has to be the hardest thing (the gluten free diet) I have ever had to tackle in my life. I am still learning so I have accidentally slipped in gluten from time to time because I get SO hungry and shaky that I just grab something and suffer the consequence later. I think I am going to have to watch the dairy now because I think that is now causing some problems. I have Fruity Pebbles or Coco Pebbles for breakfast so if I can't have milk I guess that will end too. What in the world do you guys eat?? :blink: I have only been on the diet for about a week and a half so I know I have a long road ahead of me but I know I don't have a choice. I sure love it when I don't hurt! I guess if it costs me all those yummy foods then so be it! :) I need to find out how to make bread.....I am withering away without bread!! :wacko:

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MACARONI AND CHEESE!!! That was my huge favorite. When I learned I couldn't have that or bread or OREO's ( :wub: ) I cried! LOL This has to be the hardest thing (the gluten free diet) I have ever had to tackle in my life. I am still learning so I have accidentally slipped in gluten from time to time because I get SO hungry and shaky that I just grab something and suffer the consequence later. I think I am going to have to watch the dairy now because I think that is now causing some problems. I have Fruity Pebbles or Coco Pebbles for breakfast so if I can't have milk I guess that will end too. What in the world do you guys eat?? :blink: I have only been on the diet for about a week and a half so I know I have a long road ahead of me but I know I don't have a choice. I sure love it when I don't hurt! I guess if it costs me all those yummy foods then so be it! :) I need to find out how to make bread.....I am withering away without bread!! :wacko:

OREO ALERT.....Did you know that at www.kinnikinnick.com you can order a box of cookies they call K-Toos, and the look exactly like an Oreo and taste pretty darn close. REALLY close! You can get used to it, and live with it. I gave one to my husband and he thought he was the real Oreo, they are that good! :P


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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OREO ALERT.....Did you know that at www.kinnikinnick.com you can order a box of cookies they call K-Toos, and the look exactly like an Oreo and taste pretty darn close. REALLY close! You can get used to it, and live with it. I gave one to my husband and he thought he was the real Oreo, they are that good! :P

I'M ON IT!!! :lol: I will hunt those cookies down so fast you won't be able to count to 2! LOL Thanks for the tip!! There is hope afterall! :lol: :lol: :lol: (you can tell you just made my day! heehee)

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Guest Robbin

I was ok with the gluten-free part, I accepted it and felt so much better I knew I was on the right track. Then I got my results from Enterolab a couple of days ago and found out casein too. It has hit me like a ton of bricks. I am stunned by this. Drs. told me and my kids we were lactose intolerant and we've been taking lactaid. Never could drink milk, though or eat ice cream. I went to get a cup of coffee this morning and actually cried when I realized I couldn't have cream. I ended up putting marshmellow cream in it. Wasn't too good really. I miss cheese already. I have a fridge full of all different kinds of cheese. My kids are probably casein sensitive too, since it seems to be one for all and all for one here. Anyway when I realized no cheesecake ever again I pretty much lost it over that too. I thought the intolerances would get better and it just gets worse for me, too. BUT THE BEST TASTING FOOD IS NOT WORTH THE BLACK PIT OF SICKNESS AND WE CAN DO THIS!! We have no choice, really. That food I crave or D for 3 days, joint pain for a week, maybe cancer, maybe blindness... So, not worth it. This frustration will pass and life will go on as best we can and we will all be able to enjoy our grandkids, maybe even great-grandkids. I've been sick for over 25 years and ready to have a life. Please stay strong, your children and you both deserve to be well and enjoying life. Take care and we are all here to listen. (I'm not dealing so well either)

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Thank you all for your support.

I'm still really really struggling. I don't understand why all of a sudden, after 22 years, am I having such a hard time? Was it divine intervention to get me to this website for a kick in the pants in the right direction? For so long I had no idea what I was missing out on. It was no big deal when my mom made my dinner every night and made sure she had special treats just for me. She's so amazing. She cooked dinner for everyone else in the family (I have 3 sisters and 1 brother)...and then modified it for me. My family went without so many popular dinners because my mom wasn't able to modify it for me. And forget eating out - we never did that. But the past 5 years that I've been away from home...and the past 3 that I've been married to a "non-celiac"....it's as if all my mom's hard work went down the drain. I now Know what I'm missing out on - because I started cheating a little here and there. Now there's hardly a day that goes by that I don't knowingly cheat (and that's not even counting the huge list of ingredients I had no idea I needed to stay away from). I found the list on this website of what's harmful - and I cried and cried. I guess I've gotten so used to spending the time in the bathroom - hey, with a good book and my hubby watching Mallory - it's my quiet time! I no longer get the debilitating, oh-so-painful, wanna-die cramps (either that or I don't cheat "enough" at one time to make it hurt bad). I had 18 years of being gluten-free to help my insides heal - so I guess I don't react as strongly as the newly diagnosed celiacs do. Maybe that's why I'm in such a denial of my condition. I just want it to go away!

I probably sound like a whiny baby. So many of you have numerous other intolerances and ahces and pains. I only have to deal with celiac. It shouldn't be so hard for me! I guess I"m just feeling sorry for myself....and selfish. So many of you mention living and being healthy for my daughter. I guess I'm also in denial - believing that I'm healthy and will live a long life. My symptoms (that I only think relate to celiac after having read some of the topics posted here) don't seem to be life threatening. I still get up every morning (though I rest on the couch while mally plays for a while...cause it's "too early")... clean my house...get the laundry done... go to work... etc. We eat out at restaurants and it doesn't leave me unable to live my life for a couple days like it seems to do for some. I never stressed about all the hidden gluten that seems to be everywhere. And now! I don't understand why I'm in such turmoil over discovering this website and trying to change my eating habits. It shouldn't be so hard!! But I am so discouraged right now - I guess I need to just do one day at a time (and stop thinking about doing this for the rest of my life). I've made it the past 22 years - I can make it 22 more (and then 22 more.. etc). Right!? *sighs*


Diagnosed by biopsy with Celiac at age 1 in 1984.

No other health problems.

Hubby - no health problems.

Mallory (2 year old daughter) - no known health problems at this time.

Hannah (born 04/02/07) - no problems yet!

Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

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You know, a lot of people have a lot of dietary limitations. My son is deathly allergic to peanuts, and that allergy cuts out most cookies, candy, chocolate, bakery goods....the list is long, and he has to read labels as much as I do....except that if he accidentally eats some peanut it could possibly kill him. Diabetics can't have sugary things. Others are allergic to eggs, or fish, or this or that. A lot of people have a lot of allergies or sensitivities. Our dietary world is so complex and varied, avoiding certain foods has gotten really hard because of the fact that foods can contain dozens of ingredients. Not much is simple any more. I was just looking at the label of a Lara bar, which I've just discovered and which I really love, and I was astounded to see it had only 3 ingredients. Now THAT'S amazing in today's world!

Anyhow, it's tough for a lot of us, and I try to remember that when I'm feeling sorry for myself. :D


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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But I am so discouraged right now - I guess I need to just do one day at a time (and stop thinking about doing this for the rest of my life). I've made it the past 22 years - I can make it 22 more (and then 22 more.. etc). Right!? *sighs*

You're so right with that. I can only do it one day at a time, sometimes more like one hour or even one minute at a time when I am really feeling discouraged. If I look too far ahead, life gets way too daunting.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I still haven't found the Delphi forums list of gluten-free products. I think this would make my life easier.

Ok, back to the topic!

Monica

Oh Monica, you absolutely cannot live without the delphi list. It is a godsend!

Go here:

http://www.delphiforums.com/

On the left hand side, click on "Health & Wellness"

then the first (or sometimes second) forum that comes up is "Celiac Disease On-Line Support Group", click on that.

Scroll down to "forum folders": the very first one is "Gluten Free Products List". Click on that and you will be in heaven. The list comes up in convenient categories to make it sooo much easier when out shopping. (There is a section you can go in to download the list and print it out).

At some point, you will have to sign into delphi, but it is free and SOOOOO worth it!

Hugs!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I used to be a cerealaholic until I overdid it about 6 or 8 months ago with a boxc of Honey Bunches of Oats...which I LOOVVEE, and boy oh boy did I get sick from that....it was a double dose for me beause first there was the cereal, and second there was the milk, and I swear I was sick for a week from that. I haven't eaten cereal since then, and of course now I can't anyway so that's that. But at least I no longer have to worry about a cereal aisle breakdown....I've got negative conditioning now! :lol:


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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I love Envirokids cereals! The Gorilla one is my favourite.

I have it every morning, piled high with hemp seeds (nice nutty taste and great for Omega-3). Delicious!!!!

Hugs!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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MallysMama-

I also want to encourage you to focus on your blessings. I know that can sound trite at sometimes, and yes, life can be hard, and we live in a broken world (I know that from my own life), but there is much to be said for a positive or better said, grateful attitude. I do think we are each allowed our moments of despair and discouragement, we would be inauthentic if we didn't...but eventually we need to move out of those places. Food doesn't have to rule our lives! You have a beautiful daughter--there are many Celiacs and other women out there who were never able to conceive. Make a mental list of all the blessings in your life and when you start to feel discouraged, take a moment to remember that list. Look to people who are an inspiration to you--who have suffered great hardships but maintain a grateful heart and have given much to others.


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I've had to give up so many foods: all grains, all dairy, chocolate and now all starches. Each one caused me to grieve a little and be a bit resentful of my fate. But I knew that I am a smart, adaptible person and I could find new foods to love and be healthier as the end result. I have done it. Oh sure, I miss the old stuff sometimes. But I don't dwell on it. I just divert my focus onto discovering new wonderful foods.

I'll be the first to admit that being a good, imaginative cook has made this so much easier. I do a major cook-fest every weekend and eat that all week long. I have sausages for breakfast, gave up cereal years ago and don't miss the sugar ups and downs it always gave me.

If you want to learn how to cook, I recommend watching the TV show "Good Eats". It is on the Food TV station. Very entertaining and I never fail to learn oodles on how to be a competent cook.

Good luck to you!

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Like Nancy I've had to give up loads of foods and am trying to focus on enjoying the cooking. I'm starting to enjoy experimenting with things I've never tried before, but am still struggling knowing what I can actually eat. I've got an appointment with the nutritionist next week, so hopefully he'll give me some ideas!

Missing out on the yummy gluten free cakes (coz I can't have soya or dairy amongst other things) was particularly hard, but I think it's helping with the whole sugar thing, like you've said Nancy.

I am also a great fan of Gorilla Munch. I have linseeds on it for fibre and sunflower seeds which are very yummy and extremely healthy :D DS loves them too and asks for 'mummy's special cereal'! My sister who has celiac disease doesn't like them, and having read this thread, I think she must be the only coeliac not to!!


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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Mally's Mama

It's okay to be frustrated and angry, whine a little bit, feel sorry for yourself and then move on. I really do understand why you'd feel frustrated. I found out all in one day that I couldn't have wheat/gluten, eggs, soy, dairy and several other minor foods. I had 3 small (4 and under) children. I didn't know what to eat, but I had motivation, since I was almost completely crippled with arthritis at the time. Now, 10 years later, I'm healthy and happy and my dietary restrictions are second nature. But it took me a while to come to terms with it all.

I have discovered that it's all about choices. Do you choose health or sickness? Immediate gratification or long term benefits? Being upset about your restrictions or being thankful that you know how to stay well? Ultimately, life or death? No one can make those choices for you. If you find out that your absolutely adorable daughter also has Celiac Disease, what choices will you make for her? A gluten-free diet so she will be healthy or letting her cheat so she won't feel disappointed?

You're still young - thank goodness you haven't had any major health problems yet. It's okay to let yourself grieve, it's only normal. I'm sure you'll also "come to terms" with how you know you need to eat and you will be thankful one day for your good health and your willpower.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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I'm doing better today - no crying! :) I think you're right - I had my time to be discouraged and angry and now I need to move past it and work on being healthy - one day at a time. I do have a beautiful daughter (and wonderful family) to live for...and be healthy and happy for. I pray all the time that my daughter is spared this trial in her life. They claim Celiac is genetic - though I don't know a single soul who has it. I'm sure hoping that I'm not the start of it so that my kids have a chance at normalcy. Time will tell.

I have a hard time being "different." I always struggled in high school (being a girl, it's normal)....not feeling pretty enough, being too tall, am I smart enough?, etc. Then add on not being able to eat like anyone else - it was hard. But I guess it was normal to me - so I never really "grieved" about it. Being so young when it was diagnosed - I don't remember the "hard" times. I guess now that I'm researching more about....myself?....I needed to have that time to "grieve"....even if it was for the loss of things I never really even knew. (Does that make sense?) Well, now I'm ready to be Different and accept my "eating disability." :D (Though I'm sure I'll still have setbacks since I'm pretty addicted to the simplicity of "normal" snacking.) I think I'm ready to work towards being healthy again - and I'm anxious to know what it feels like! Maybe it'll help me be more Awake and have more energy and not be so moody (especially to my hubby). We'll see what kind of a difference staying gluten free can make in my life! Thanks for your support and suggestions! (I'm definitely going to find all those cereals and stock up!)


Diagnosed by biopsy with Celiac at age 1 in 1984.

No other health problems.

Hubby - no health problems.

Mallory (2 year old daughter) - no known health problems at this time.

Hannah (born 04/02/07) - no problems yet!

Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

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Guest nini

I'm so glad! Remember, we are all here to help you with any of the ups and downs of this... it isn't always easy, but it doesn't have to be difficult. You are allowed to have your moments of being discouraged and stuff, but like you said, time to move on... good luck with it, anything I can do to help, I am here.

Also, yes it's genetic, while you don't "know" anyone else in your family with it, I'm sure someone (maybe more than one person) have it and just don't know. Maybe their symptoms weren't annoying enough for them to find out why, maybe they thought it was "normal" that everyone just deals with these kinds of symptoms... even just 5 years ago there was so much less that people knew about Celiac and therefore many people have gone undiagnosed because they had no idea that their symptoms were related to this. And unfortunately yes your daughter is at a higher risk for it. But I've found with me and my daughter both being on the diet, it makes us closer! It's a bond that we share and we understand each other. While I don't wish it on your daughter, if she is, it's not the end of the world.

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So glad you're feeling better. Have fun cereal shopping :)


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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