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FIRSTFERRET's Photo FIRSTFERRET Posts: 425
1/9/09 12:12 A

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Hey IRONEAGLE (awesome screen name btw!),

I wanted to drop a line of ((((hugs)))) for you. I'm pretty new to the celiac thing myself and went into a panic mode for the first month (the holidays) when I saw how few "replacements" were available or how expensive they were. I bucked up and cooked up a pot of something from scratch and dragged that all over the country with me. It allowed me to introduce folks to my new diagnosis and let the hostesses relax about the holiday meals. "No worries, I'm self-contained!" HAHAHA!

I definitely like feeling better even if it takes a bit more thought to grocery shop and prepare meals. I too deal with multiple challenges, most of them reduce the variety of food choices I have in different ways. I think if you can make up your mind and accept it on the inside, it goes a long way toward creating optimism about things.

Almond Cheese is definitely a blessing and I love that there are organic milk and butter products that do not bother me (in moderation). Arrowhead Mills has a really good line of breakfast cereals. Bob's Red Mill is great for pancake and baking mix, I have not built up to my own flour collection yet. LOL

I use the "Gluten Free Grocery Shopping Guide" by Matison & Matison to get me started in the right direction shopping for products that are known to be gluten free. The author researched the items in the book and I find it is a help. The label will provide any further information required (i.e. chemical additives). It is an east/mid-west centric book I believe (I'm west) but I still think it's helpful.

"Living Gluten Free for Dummies" by Danna Korn is also a joy to have around. It has inspiration, humor, and recipes that keep me motivated and interested.

Regular recipes are adjustable most of the time, I find, but I am sampling gluten free cookbooks from the library so I can find which have good recipes. Amazon has good reviews on most of the popular ones.

Oh, Trader Joe's has this totally AWESOME gluten-free brownie mix that is to die for. OMG. The first chocolate thing I had in months that did not send me running...or...well. Oh yum. I love Trader Joe's. Someone at work gave me that as a present. I have got to get to Trader Joe's this weekend!

emoticon

Take a deep breath, go one step at a time. Steam vegetables, make fruit salad, keep it simple for a while. Someone on an MSN board gave me that advice when I was in panic mode. Best advice I ever got.

More emoticon you can do it!


"When you get to the end of your rope, tie a knot and hang on." - Franklin D. Roosevelt (1882-1945)


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DOTSLADY's Photo DOTSLADY Posts: 10,018
1/7/09 12:28 A

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emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

You're going through a lot right now! And everyone's told you what I would have - esp the blood test, then the www.enterolab.com stool testing for everything you can afford (only want to sample once, ya know?).

My experience going gf was in panic mode through a veil of terror/stupor & fog. Label reading was a nightmare; I had no energy to shop, let alone walk the aisles of a superstore to get something I forgot, of course, at the other end of the store.

If I were to do it over again, if it were available at the time, like Ruth suggested, I'd read Shauna James Ahern's book (I HAVE read it, and it was such a nice read), link to amazon through her blog: glutenfreegirl.blogspot.com/ and relax. I'd buy REAL food and not label read until I got the hang of what I was doing - then start looking for one or two replacements at a time. If you get away from eating the gluten, you'll lose your taste for it (not the memory though - you'll reminisce about that!), then you'll not be so offended by the gf versions; you might even be grateful for them! I am.

However, at first in my frenzy to be "normal" I gained 22 lbs trying hundreds of dollars of gf specialty/replacement foods which I have ended up not including in my diet anyway. "I" have the fat gene or an overused pancreas though. I also have hypothyroidism. Soo, regarding that and goitrogens, what Melissa/SunClay shared is probably helpful. I went to a nutritionist and she told me to not worry about goitrogens except soy. I went to an endocrinologist and he tried to put me on Medifast with is a soy-based meal replacement shake plan. Hmm, I ask: "Goitrogen, hello?" And he said, "Oh, we'll just adjust your Synthroid accordingly!"

Well, I wasn't up for that after having crashed a few months earlier with a previous change. But what I thought was interesting was the POSSIBILITY to do it, as I've never heard that before. I would think you could do the same with other goitrogens in your diet, esp if you were systematic about them, too?! I'm not a huge goitrogen fan anyway, so this isn't something I'm expert with - just throwing the thought out there to discuss with your doctor.

It sounds like you're a distance from a larger city, but if you could call someone at your local support group, maybe talking to someone who understands would help. www.csaceliacs.org/chapters.p
hp


GIG branches: www.gluten.net/branches.php

Deleting dairy is often mentioned because the lactose is digested from the tips of villi. If gluten has damaged the entire villi, you'll likely have "lactose intolerance" ... such was not the case for me before, during, or after gf diet. However, while I was a milk drinker before gf diet, I'm now a plain yogurt (goat or cow), or kefir person now. I also enjoy Daisy brand cottage cheese, too. I've slowly moved to trying to get as organic as possible, but I certainly didn't right at first.

Dairy can also make your brain foggy, so if that's a symptom for you, then I'd look at it. As for the other foods to delete from your diet, you're right to not go gung-ho based on an internet suggestion. "Wouldn't be prudent," as Bush senior would say (it was him, right?) lol. At first I read a lot from celiac.com chat boards, and was told same things about toaster and foods ... I didn't change my toaster oven, just cleaned it between "takes". However, the family has grown accustomed to my gf bread if we have any at all.

For a while I prepared gf pasta and gluten pasta separately in the kitchen, but kept having to get new utensils for fear of contamination (I was foggy then, remember?). We use Tinkyada pasta if we do at all anymore. It has good texture, but I sure miss gluten! I think I was addicted, but that's another post.

It took me a good four months to get GI relief. Foggy brain was much quicker. Take a look at our sticky topics - and also click the main discussion thread for more topics from others that may interest you. Did you read this link about "Investigating ..."? www.sparkpeople.com/myspark/t
eam_messa
geboard_thread.asp?board=-1x9
48x11
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Whilst you're figuring all this out, keep in mind that a GF diet is not as bad as a candida diet, so it could always be worse! Thanks for keeping us posted.



Edited by: DOTSLADY at: 1/7/2009 (01:16)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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MADDIEPARK Posts: 7
1/5/09 6:39 P

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HI!
I have been on a GF diet for several months now. I spent these 1st few months in "survival mode" eating getting lots of expensive junk food replacements from the health food store. My resolution is to just eat naturally healthy GF foods found in the perimeter of my local Walmart. Produce, dairy, frozen fruits and veg, and meat departments. No more junk replacements that offer very little in nutritional value. My only purchases now at healthfood store: almond butter, almond milk, LaraBars (awesome fruit & nut bars with absolutely nothing in them but fruits and nuts!) and my new staple Food for Life Brown Rice Wraps. Someone else mentioned these in a previous post. I use these instead of bread for wraps. I spread with hummus add a protein (tuna, chicken, coooked eggs) pile with raw spinach and other veggies. LOVE it!!!
Anyhow....words of wisdom from a GF gal who has been experimenting for a few months. Good luck on your journey!

Susan

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1/5/09 3:28 P

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My doctor, gave me a generic couple sheets of paper and also said go on line to the celiacs web. sites to find out more,and this has been one of the sites that i like the best. when you get a chance read thru some of the threads, there are some good recipe ones.

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IRONEAGLE48162 Posts: 23
1/5/09 1:53 P

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Gee, twist my arm to eat normally! LOL

I called my doc this morning to request a blood test. He seemed pretty offended, saying the saliva testing was "state of the art", but he did go ahead and order the blood test for me. I told him he didn't have any right to be offended since he told me to go online to learn more about gluten intolerance. He had already spent an hour going over my test results by the time he got to the last thing, which were my glutein levels. He glossed over going GF briefly and told me to go online for more info. He should've scheduled more time to talk with me about my test results. I know he spent an hour going over them with me, but going on a GF diet could be discussed for a whole other hour all by itself! These docs shouldn't tell patients to go to the Internet for answers if they're afraid of what we might come back to ask them for.

He keeps trying to get me to do detox food baths, too, but I've seen site after site online saying they don't work. I can't find one independent study that's been done on those things saying they work. I'm not spending more money on stuff that hasn't scientifically been proven. I'm spending a lot of money I don't have already trying to fix this body!

SUN_CLAY's Photo SUN_CLAY Posts: 16,255
1/5/09 12:31 A

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Before you take that test you need to eat a lot of Gluten! So eat your favorite Pizza one last time or your favorite pasta. Ask your doctor how many days you should eat gluten for an accurate test.

Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
IRONEAGLE48162 Posts: 23
1/4/09 9:59 P

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All of you have been so kind and helpful, and I am so grateful! I hope to be able to help others someday the way you have helped me. I really appreciate those of you who have offered tasty alternatives. Some people I've talked to have told me to just not eat gluten containing food, period, to only eat meat, fruit, veggies, rice, etc., but I am such a picky eater that alternatives are a must for me. I'm glad many of you understand that and didn't gloss over my concerns.

I am calling my doc first thing tomorrow morning to request a blood test to make sure I really am gluten intolerant. I hope the test comes back negative, but with the saliva test results, I'm doubting that will happen. If it does come back positive, I know there's help here for me. I will make sure to pop back in to let all of you know what happens. Again, thank you, from the bottom of my heart!

SUN_CLAY's Photo SUN_CLAY Posts: 16,255
1/4/09 11:41 A

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I have heard that Disney, besides being fat friendly, is also very sensitive to food allergies. That is nice that they were able to work with you! I love that.

~melissa

Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
VELMOOSE's Photo VELMOOSE Posts: 688
1/4/09 11:37 A

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I'm noticing it is becoming easier at restaurants though. I've had so many servers tell me that either they or a family member are GF so they know just what I'm asking for. My best GF experience by far was at Boma restaurant at the Animal Kingdom Lodge in Disney World. The chef took me to each station, explained what was safe (and most of it was), brough me substitutes for some things I wanted to try and even gave me the recipe for her squash soup. Her husband is GF so she knew all about it.

Tammy (Vermont)

Oh, yes I CAN!


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SUN_CLAY's Photo SUN_CLAY Posts: 16,255
1/4/09 11:13 A

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Velmoose,

Thanks for the smile. I get that all the time. Guess what, Lettuce gives me stomach cramps!!!! so no, I can't eat the salad. I always plan on NOT eating at these things. If it is catered, unless a dish was ordered esp for me, I just assume I can't eat it. I bring my own, I always plan ahead. I have been known to sneak out to my car and eat my meal.

~melissa

Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
VELMOOSE's Photo VELMOOSE Posts: 688
1/4/09 9:35 A

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I forgot to mention Glutino Pizza (I especially like the spinach and feta one) and Mary's Gone Crackers.

Even though I've been GF for over 10 years, one thing I still deal with is the emotional fallout when people either won't or can't understand that I'm not being 'picky' when I can't eat something. I can't tell you how many times we've been invited to eat at some event and when I say I can't eat the main course I'm told "well, you can eat the salad can't you?" I always wanted to reply "I'm GF not a rabbit!" I've actually developed a seminar that I've taught for Girl Scout leaders on dietary inclusiveness, how to make sure everyone is well fed and happy.

Tammy (Vermont)

Oh, yes I CAN!


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KTCHNOFDNGR SparkPoints: (0)
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1/3/09 11:24 P

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IronEagle,

Being in a small town can be very hard to deal with being gluten/wheat sensitive and/or celiac. If you are looking for good recipes from a real foody, look at glutenfreegirl.com. Shana Ahern is GF and her husband is a chef. She also has a book that, while I haven't read it yet, I plan to soon.

I've been GF for about 4 years now, and as a person that has DH going through grad school, I understand the budget issues. In our house, GF substitutes are luxuries, not necessities. Because of this, we've used rice as a pasta substitute (really good with ragu cheese sauce, which is GF). I got a bread machine for Christmas about 2 years ago, since homemade or bread-mix GF bread tastes MUCH better than the prepared stuff (although there is a rice-pecan bread in the freezer case that tastes OK and if you use a bread-mix, bob's red mill GF bread mix is MUCH better than Gluten-Free Pantry's, since it doesn't dry out as fast) but I usually just roll lunch meat around mozzarella cheese sticks for a "sandwich" If I am feeling fancy, I wrap it all in lettuce as well. Living in the southwest, I also eat a lot of quesadillas for lunch (shredded cheese between 2 corn tortillas, with beans added if I have them on hand). Now that I am teaching full time in the public schools, we DO keep Tinkyada pasta on hand and have fallen in love with Pamela's GF pancake mix for Saturdays. My husband, who is NOT GF, tells me that the pancakes from her mix don't taste different from regular ones at all. However, it does contain almond flour, so if you are allergic to nuts, you should stay away. I don't know about the Glutino multi-grain crackers, but I love Glutino's cheese flavored crackers. I avoid almost all N-ER-G (I'm not sure if I am spelling that right)foods like the plague--they are dry, they fall apart, and usually taste like a cross between chalk and sawdust. Perky-o's taste a little better with sugar on them, but I understand your pain. I really like the various granola cereals by Enjoy Life, but have found that it is easier and cheaper to eat "sandwiches," leftover rice or carnation instant breakfasts for breakfast--I don't eat enough before they go stale, and hate wasting the extra money when I throw it away (which is why I no longer try to keep bread on hand-GF bread has a MUCH shorter shelf life and will go stale and/or moldy after about 1-1 1/2 weeks). I also like to keep GF crackers on hand, as I can then make my own "lunchables" by taking lunchmeat, crackers and cheese to work with me. As long as you don't expect it to be like real crackers, I like either the Diamond brand nut crackers (I can get those at my local grocery store) or the Mary's gone crackers brand (the pepper ones are my favorite, but they are also pretty spicy--not bland AT ALL). Cream of Rice or Grits are both naturally GF, so you can also do that (and grits is at your local grocery store). My sister swears by Bob's Red Mill Mighty Tasty cereal for her family, but I've never tried it. There are certified GF oatmeals out there that you can buy, but I have never had a Problem with McCann's Irish Oatmeal(carried at wal-mart). Neither has my sister, who has a child that is like the proverbial canary when it comes to gluten. Stay away from Quaker or store-brand Oats, though, as there is a lot of cross-contamination. I still miss not being able to order pizza, although I have found that the Kinnick-Kinnick foods pizza rounds in the freezer case work well for me when my husband wants to have pizza. It's a pain that I have to make mine, but it is much better than salivating over DH's food. Amy's Kitchen also makes a pre-made pizza that is edible if you add extra cheese and don't eat the outside crust. Never as good as dominos by a long shot, but at least I don't feel like strangling DH when he eats his order-in Pizza.

We did NOT sanitize our kitchen or get all different pans for me. We DO clean everything that has gluten in it really well before I use it, and I have yet to get a reaction from cross-contamination in my own kitchen. If you are worried about cross-contamination because of the toaster, a toaster-oven keeps that from being an issue as long as you don't cook regular and GF bread together. We just use 2 different toasters, since they are less than $10 at wal-mart (bad GF bread is better as toast, BTW--harder to tell how dry it was to begin with emoticon )

Even though we live 2 blocks from a health food store, we buy most of our GF products from online. The products are usually less than what I would pay per box there, and they usually have enough of a shelf life that I can make 2 orders a year and call it good, even though I am buying in bulk. (and Amazon will give you free shipping for over $25).

Right now eliminating gluten is very overwhelming. But it will get better--I remember my first week of being GF and sitting in the middle of my kitchen floor and crying because every can I pulled out of our pantry seemed to have SOME sort of gluten in it. I looked at my husband, who wanted to know what was wrong, and told him that I couldn't eat ANYTHING!!! Now, I don't even really notice the difference.

If you want to take the blood test for Celiac, you need to stay on gluten or you could get a false negative....but if you don't tend to eat very many wheat products on a regular basis to begin with, you could still have a false negative--you have to eat the equivalent of about a half a slice of bread each day for a month to six weeks before the test for it to be accurate.

You can get genetic testing through Enterolabs whether you are GF or not. When you combine it with their stool test, you can know whether the gene has been turned on for you. I had been GF for close to 6 months when I finally had the money to get the test done (insurance didn't cover it, so I paid with my MSA), and it told me that I have the gene and that I still had damage to my intestines. Because it can take up to 2 years for your intestines to heal completely, that can be a possible avenue for you. The bottom line is that, if it looks like a duck, acts like a duck, and quacks like a duck, it's a duck--whether it is gluten intolerance, celiac disease or gluten sensitivity. All of them require you to change your eating habits to get better. Because you already have an auto-immune disease (assuming I understood you correctly), that makes Celiac more likely, not less so. If it IS Celiac, then eating gluten increases your likelihood of all kinds of nasty cancers when you stay on gluten, even only a little bit every once in a while (so, NO, cheating isn't an option).

I'm sorry I wrote so much, and I hope that it helps you. Keep your chin up--as you adjust to the lifestyle, it will get better!!!

ktchnofdngr--with the taste-bud scars to prove it!

Ruth



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LUCASWE's Photo LUCASWE Posts: 29
1/3/09 10:39 P

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IronEagle,

You will need to eat gluten containing (regular) foods for at least two weeks for the blood tests or endoscopy (if you decide on that) to be reliable.

If you do have to go back to a gluten-free diet, here are a few websites that might be helpful:

Do you have a crockpot? A great gluten free blog that deals with cooking with a crockpot is:

http://crockpot365.blogspot.com/

Gluten Free Restaurant Awareness Program (a program of the Gluten Intolerance Group of North America):

http://www.glutenfreerestaurants.org/

CeliacChicks (another good blog):

http://celiacchicks.typepad.com/celiacch
icks/

 
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SUN_CLAY's Photo SUN_CLAY Posts: 16,255
1/3/09 9:40 P

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IronEagle

I am with you 100%. I am also hypothyroid and gluten sensitive. I went GF from a recommendation from a Nutritionist, and I have never looked back. I agree, focus on one disease at a time. When I first discovered I was Hypothyroid, I started reading all this stuff that says not to eat this or that. This is a good article about Goitrogens and why it is not good for us. www.whfoods.com/genpage.php?tname=ge
or
ge&dbid=47
Most of them are OK if you cook them or eaten is small quantities.

Secondly, I have to agree, don't try to substitute the GF stuff right away. I hated GF bread when I fist tried it. I continued trying different breads and found one that I like from a GF Bakery. It is not the same. I also have found different things that I like. Pamela's Products are some of my favorite for mixes and I LOVE their gingersnaps. Here is their site. Plus, they also have recipes. I think you can get there stuff from amazon. www.pamelasproducts.com/ I think you can get some of her stuff at amazon.com.

My best advice is to eat good clean products. I know it is a distance to the Natural food store, but you might be surprised what you can find in your neighborhood store. Meat, veggies and Fruit are naturally GF. Not to forget, beans and rice. You learn as you go. I have a couple GF cookbooks, but rarely use them. It is always the processed stuff that has the Gluten in it.

If cooking is something you and your DH enjoy, then consider this a new adventure. you will soon find things you both enjoy. There is a lot of good advice here. Keep posting questions and we will see what we can do to help.

It gets easier....I promise you that.

~melissa

Life isn't about how to survive the storm, but how to dance in the rain.

"Even on the days you just don't feel like going to work, you still go, right? It's the same with exercise." -Professional Volleyball Player Gabrielle Reece

Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. - Emily Kimbrough

The cure for anything is salt water - sweat, tears, or the sea. --Isak Dinesen
BRUIN2's Photo BRUIN2 SparkPoints: (27,391)
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1/3/09 9:32 P

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I haven't tried all of the products you listed (boy, you really stocked up!!), BUT, I have tried some of the Glutino brand products - the shortbread cookies and the wildberry granola bars were great (I know you didn't buy those things, but my point is that I'm a fan of the Glutino brand).

I LOVE the Nature's Path Corn Flakes - mmmmmm!!!

And the Tinkyada noodles are soo good! Just make sure to rinse them in cold water after you boil them (I throw them back in the pot with some sauce and put it on the stove for another minute or two to warm them back up after the cold water rinse).

If you are going to get the blood test done, you NEED to have gluten in your body - otherwise you could get a false negative.

Good luck!

Oooh, and Larabars are a really tasty, easy to transport bar (much like a PowerBar) - check out https://www.larabar.com/secure/index
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Those are not my feet. The scale aptly says: Go Run.

Attitude + Effort = Success

Baby Bruin born April 29, 2010. (Highest weight during pregnancy - 178. Working to get back to the low 140s. 160 represents my highest weight before pregnancy).


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SUPERDUPER26's Photo SUPERDUPER26 Posts: 1,553
1/3/09 8:47 P

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Hello Iron,
You've come to the right place for help! I am still struggling with all aspects of GF eating, but here's what I've learned so far:

SKIP THE SUBSTITUTES! Don't try to replace all your old favorite foods with the GF versions. You've already found that most of them area awfully expensive and taste not-so-hot. Look at NEW foods to try, quinoa, teff, millet.... A lot of Thai, Indian and Mexican meals are really easy to convert to GF if they aren't already (watch the prepared sauces though, its best to make your own). Its definitely time to start experimenting with different foods, learn to break out of the "sandwich rut" and you'll discover there's a whole new world of food out there just waiting for you.

Get a good book on GF eating, my two favorites are "The Gluten Free Bible" by Jax Peters Lowell and "Living Gluten-Free for Dummies" by Danna Korn. They will both help you learn to identify the common food culprits and make label reading and shopping a little easier.

A good cookbook is a must, Carol Fenster pretty much rules the GF field, but Analise Roberts' "Gluten-Free Baking Classics" and Connie Sarros' "Wheat-free, Gluten-free cookbook for Kids and Busy Adults" are my two favorites. Each book will have their own "flour" mix, if you are coordinated enough to keep them all straight by all means make up a big batch of flour for each book. I tend to be not so coordinated so I make a batch according to each book's recipe and then dump them together. Tacky, but it works.
The less rice flour you use the less gritty your foods will be, NEVER try to bake with straight rice flour! Yuckoriffic!

I would recommend cutting out out foods one disease at a time. If you're going to cut gluten that's a good start, but I wouldn't think cutting out all those other foods at the same time is the best way to go if for no other reason than its hard to track what causes what if you cut everything at once.

If you can at all get your hands on a real blood test or get your intestines checked (however they do that) to make a absolute diagnosis by all means do it! Gluten-intolerance and/or Celiac are tested by various means, some of which are much more reliable than others. Do your homework first and make sure you aren't wasting your time with an unreliable test, especially if you've cut out gluten before getting tested.

It sounds like you're also in a Small Nowhere sort of place, which makes GF shopping a bit more challenging, but like a few others have suggested once you figure out what you like, shop online! Even once I include shipping costs I still save money most times by ordering online vs shopping in my local grocery, not to mention the selection is 10 times bigger! Both Ebay and Amazon get some good bulk shopping lots sometimes, its worth checking out from time to time.

GF doesn't have to be stressful, but it will require some learning and some diligent label reading. Just make peace with that upfront and it will go a little smoother. emoticon

Good luck!


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IRONEAGLE48162 Posts: 23
1/3/09 8:33 P

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Thank you all SO much for reading through my long post to give me some advice. I was writing down your suggestions as I read and I have about a half page of stuff that won't taste like sawdust, yay! I have been so discouraged today that I was *this* close to taking everything back to Sprouts and going back to my old way of eating, but all of you provided just the encouragement I needed!

I will call my doc on Monday to see about getting a blood test done to test for celiac versus intolerance. If I am celiac and not just intolerant, what exactly would that mean for me? Should I keep eating gluten until I get a blood test done so it will be accurate?

Unless my doc tells me otherwise, I'm going to ignore what some other people have told me elsewhere about avoiding all the other foods I mentioned in my original post. There are so many opinions out there on autoimmune diseases that it's hard to know who to listen to. I will discuss it with my doc, though, just to make sure I'm in the clear.

Would any of you be so kind to tell me if any of the following tastes like sawdust, too, since I haven't tried it yet? If any of it does, I'm taking that back to the store along with that nasty Perky O's cereal: Ian's fish sticks, Glutino (penne, multigrain crackers, brown rice bread), Hodgson Mill (apple cinnamon muffin mix, multi-purpose baking mix), Namaste Foods (brownie mix and muffin mix), Natures's Path Honey'D corn flakes, Southern Homestyle corn flake crumbs, and Gluten-Free Pantry Olive Oil & Garlic Croutons.

I also have Bob's Red Mill (mighty tasty hot cereal, all-purpose baking flour, homemade wonderful bread mix), Kinnikinnick bread and bun mix, and Tinkyada pasta, but I'm thinking those are OK tasting based on your advice. Oh, and I tried some Glutino raisin-cinnamon bread this morning that was actually quite good. At $6.49, it had better be good, right?

How did all of you deal with this psychologically when you were diagnosed? I am thinking about going to therapy. I'm only 29, and my whole life, I have looked at members of my family and been inspired to not turn out like them-morbidly obese, disabled by age 40, multiple health problems, etc. I have maintained a good weight, eaten a healthy diet, and worked out 5 days/week my whole adult life. Now all of a sudden my body has turned on me despite all my best efforts and I don't know what to do. I am so frustrated and I feel betrayed. My DH and I have always enjoyed cooking together, and I feel that joy has been taken away from us now. He works a weird schedule, so whenever we get to eat together, it's a special occasion, which he now says won't be the same. He's been really supportive through this, I love him so much, but he's as bummed as I am. Eating out is special for us too since we don't do it often, and I don't know how we're supposed to do that now. We enjoy travelling and I don't have the first clue what to eat when we go out of town.

Thanks again for helping!

LUCASWE's Photo LUCASWE Posts: 29
1/3/09 7:36 P

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Dear Ironeagle48162,

I've been gluten free for 34 years, and back then there weren't all the commercial products we have available now. I used Cream of Rice in my meatloaf in place of bread crumbs. The only 'cookie' that was available was a rice bran cookie which eventually tasted like flavored saw dust, so the many products we have available now are a great improvement. Believe me, there are some horrible things out there, but there are some really great things too, but remember - everyone's taste is different. Things that you or I think are horrible, someone else will love.

If you can somehow manage it, pick up a gluten free cookbook (Bette Hagman, Carol Fenster, Connie Sarros are all great resources). Sometimes Amazon.com has 'used' copies of books available, along with new copies from them. Also, celiac.com and wholefoods.com have great recipes (as does wegmans.com).

Strict avoidance of gluten (that includes cross contamination) is very important if you have celiac, as it is an autoimmune disorder and any gluten intake causes your immune system to attack your body and can cause other disorders - cancers, osteoporosis, etc.

I would feel more comfortable in giving you advise if your doctor tested (a simple blood test) for celiac vs a gluten/wheat allergy. I find it's cheaper to make things at home rather then buy store bought, but I work long hours so I'm resigned to a point in buying commercial products.

Bob's Red Mill has an all-purpose gf flour that does not contain any of your restricted foods, but I would recommend checking with your doctor before eliminating all of those items. Based on your doctor's knowledge of your situation, some or all of those items may not be necessary for you to avoid.

Bill

 
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DPRIM1's Photo DPRIM1 Posts: 919
1/3/09 6:03 P

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My doc says I am gluten sensitive, so I understand the frustration also, I bout this rice bread YUK!! So I got the bob mills mix and made that now that was good, I have gotten one cookies Yuk! again, so I won't get that, try to consider this as a no carb diet, just carbs from fruit an veggies, that makes it easier, My doc said I can eat Ezekiel Bread even thou it's made with sprouted grains it digest different that regular gluten, ask your doc about it, Keep the faith you will feel better and it will get easier, Debbie

Debbie
Be still and know that I Am God! Psm 46:10



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BAMJ111's Photo BAMJ111 SparkPoints: (4,226)
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1/3/09 4:10 P

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I went thru the same struggle when i started eating gluten free. I was a Kashi & Multi-grain cheerios girl. The brand name Rice chex cereal is GF i usually add a little perky's flax cereal to add a little crunch and protein & throw on some frozen berries. As far as dairy, i am lactose intolerant, but can handle 1 serving of cheese if eaten with something else, and can eat yogurt & use Lactose free milk. You can still eat brown rice,white, rice and potatoes with meals & of course lots of fruits and veggies. As far as mixes the Gluten Free Pantry bread mix, and pancake waffle mix isn't bad. I use that occasionally. You can still have eggs or omlets for breakfast too, and i eat canadian bacon. I posted a recipe for Peanut butter/choc. bars that are good. Food for Life Brown Rice tortillas work well for taco's or to use in place of bread with lunch meat & Cheese. Hormel Natural Choice lunchmeats are really good. When i make meatloaf i add a little rice or save bread crumbs that i freeze from the occasional time i make bread. i have a 4 slice toaster and just use the right side of it. My husband & kids still eat food with gluten in it i just clean things well.( i'm gluten intolerant)Instead of crackers i eat Baked Tostitoes when i'm having cheese, and when i want peanut butter (i like the Skippy Natural) i eat it on celery. for snacks i frequently eat popcorn, and if your an ice cream person you just need to read the labels. Hope this helps you out some.

Edited by: BAMJ111 at: 1/3/2009 (16:11)
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BRUIN2's Photo BRUIN2 SparkPoints: (27,391)
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1/3/09 4:04 P

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In speaking with a gastrointestinal research lab at the university here, the rep told me that it often takes 16 weeks (!!!) for those with celiac to be symptom free once eliminating gluten from the diet...

For me, it was 8-10 weeks...

Those are not my feet. The scale aptly says: Go Run.

Attitude + Effort = Success

Baby Bruin born April 29, 2010. (Highest weight during pregnancy - 178. Working to get back to the low 140s. 160 represents my highest weight before pregnancy).


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WONDERGIRL50 Posts: 20
1/3/09 3:10 P

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It sounds like a good idea to get a proper diagnosis - or rule-out - of celiac, since the saliva test is not foolproof. The blood tests and, if necessary, an endoscopy will tell the truth, but will not be accurate unless you are consuming gluten.

If you don't feel different after avoiding gluten for at least a month, your diagnosis may not be correct. Avoiding all the wholesome foods you listed (in your original post) seems like strange advice. The reason so many commercial GF foods taste dry and gritty is the high proportion of rice flour. I do most of my own baking and substitute rice flour with other flours. One positive - since it is more challenging to buy or bake your own GF goods on a budget, there is incentive to eat less of these carbs. Good for the waistline!

VELMOOSE's Photo VELMOOSE Posts: 688
1/3/09 2:26 P

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Some things I could not live without:
Tinkyada pasta - even my family likes it and it's nearly foolproof
Kinnikinnick Many Wonders Multigrain bread and Tapioca cheese bread
Against the Grain pizza crust (made in VT)
Nature's Path Mesa Sunrise cereal
Amy's GF Mac & Cheese frozen dinner
La Tortilla Factory Sonoma Ivory Teff Wraps

Most of these I'm able to get at my regular grocery store (Shaws) and they would order if I asked. We are lucky to have a really good Co-op grocery in town so I get the rest there. I don't order online because it's so expensive. I try to eat more naturally GF food (like brown rice) to save money.

Tammy (Vermont)

Oh, yes I CAN!


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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,900
1/3/09 2:08 P

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Oh, go online and order a lot of your products. I use Gluten Free Pantry. Buy in bulk after you find thngs you like something from Amazon.com. Tinkyada has the best pasta, I think. My family couldn't tell the difference from day one.
I have to drive 100 miles from to the nearest place to get GF products.

Edited by: TEDDYBEARDONNA at: 1/3/2009 (14:50)

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ILLINITEACHER52 Posts: 7,257
1/3/09 2:06 P

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It does take time to adjust. I just focused on the things I could have and built menus from there - not using the substitutes. I agree that the waffles taste like sawdust at first. I now like the Van's Flax waffles with almond butter on them. I make my own pancakes using almond meal flour. (I avoid corn and dairy also). Our whole extended family has accepted having linguini with clam sauce or spaghetti on rice pasta. That seems like an easy adjustment and not too expensive. Put your emphasis on plain protein, vegetables and fruit for now and then experiment with rice flour. (Staying gluten free helps me stay calm and more focused and positive. I hope you will find all the positives of this life style soon,)

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DARRELLBURTON's Photo DARRELLBURTON Posts: 13
1/3/09 2:05 P

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www.glutenfree.com/SearchByKeyword.a
sp
x?word=kinnikinnick&gclid=CI-zttqK85R>cCFQv7agodb2D_Dw


kinnikinnick is one of the better brands I have tried. I make my own bread and cookies. I have found that if you add Orgran Gluten Substitute (GFG)
, about two teaspoons per recipe makes the items hold together better and soft. the food does taste different but after some time you do get use to the foods. you can check online for the food items, you could get them cheaper and delivered to your door.

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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 11,900
1/3/09 1:58 P

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Who told you to give up dairy and some of the other things you talked about? Yes, there are people who have Celiac that can't have those items but unless you have been tested I sure wouldn't take that step at this time. There are so many good recipes out there that a person who eats G can't tell the difference. It does take time to change your taste buds too, but alot of the stuff tastes like cardboard. If you feel up to talking on the phone, maybe I can help. Send me a private sparks mail and your phone number if you want to talk.



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LUCASWE's Photo LUCASWE Posts: 29
1/3/09 1:30 P

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Dear Ironeagle48162,

I've been gluten free for 34 years, and back then there weren't all the commercial products we have available now. I used Cream of Rice in my meatloaf in place of bread crumbs. The only 'cookie' that was available was a rice bran cookie which eventually tasted like flavored saw dust, so the many products we have available now are a great improvement. Believe me, there are some horrible things out there, but there are some really great things too, but remember - everyone's taste is different. Things that you or I think are horrible, someone else will love.

If you can somehow manage it, pick up a gluten free cookbook (Bette Hagman, Carol Fenster, Connie Sarros are all great resources). Sometimes Amazon.com has 'used' copies of books available, along with new copies from them. Also, celiac.com and wholefoods.com have great recipes (as does wegmans.com).

Strict avoidance of gluten (that includes cross contamination) is very important if you have celiac, as it is an autoimmune disorder and any gluten intake causes your immune system to attack your body and can cause other disorders - cancers, osteoporosis, etc.

I would feel more comfortable in giving you advise if your doctor tested (a simple blood test) for celiac vs a gluten/wheat allergy. I find it's cheaper to make things at home rather then buy store bought, but I work long hours so I'm resigned to a point in buying commercial products.

Bob's Red Mill has an all-purpose gf flour that does not contain any of your restricted foods, but I would recommend checking with your doctor before eliminating all of those items. Based on your doctor's knowledge of your situation, some or all of those items may not be necessary for you to avoid.

Bill

 
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BRUIN2's Photo BRUIN2 SparkPoints: (27,391)
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1/3/09 1:03 P

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Sorry this is causing so much stress for you.

GF stuff DOES taste different... when I was first diagnosed with celiac disease in October, I spent a couple of weeks mostly eating "naturally" gluten free foods.

I did buy some GF cookies, but they were bad... but I tried to use it as a learning - I won't buy those cookies again! Now I tend to just buy one new thing a week (if that) - I don't want to waste money on things I'm not going to eat...and really, do I *NEED* cookies?!?! Ummm, NO!!

We bought a second toaster (it was $10) - I have not replaced any other kitchen supplies, and I don't know if I will.

I'm sure others are more knowledgeable on the subject of eating gluten even though it doesn't give you symptoms...but from what I know for celiacs (I don't know if this is different for a wheat intolerance), gluten will attack your villi, causing damage to your intestines even if you aren't having symptoms.

Oh, and the thing about GF products - you will find some that DO taste really good TO YOU...focus on those ones!

Good luck!

Those are not my feet. The scale aptly says: Go Run.

Attitude + Effort = Success

Baby Bruin born April 29, 2010. (Highest weight during pregnancy - 178. Working to get back to the low 140s. 160 represents my highest weight before pregnancy).


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IRONEAGLE48162 Posts: 23
1/3/09 12:37 P

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Hi everyone,

I apologize in advance for this being a long post but I am really stressed right now and have a lot of questions.

I am a 29 year old female who was diagnosed hypothyroid 14 months ago. The doctor I was seeing was a real bonehead, so I recently switched to a naturopath who came highly recommended. He ordered saliva testing, and I got the results this past Tuesday. I found out that I also have adrenal fatigue (I wasn't surprised since I have all the symptoms), and a lot of my hormones are messed up. My Synthroid's getting bumped up again, and I will also need to take a Vitamin C powder, a Vitamin B complex, Ashwagandha, Rx Adrenal Liquid, and 5 mg DHEA.

All this I can handle. However, the saliva tests also showed that I am wheat intolerant. My Gliadin levels were at 44. Since the doc had already spent an hour with me, he asked me to go online to learn more about eating GF.

After much research, it seemed that I would be able to replace my gluten-containing foods with GF versions. I had to drive 80 miles round trip to the nearest Sprouts because that's the closest health foods store to my house. I spent $120 on just a few items! I can't believe a loaf of bread (16 slices) was $5 and a 5 oz. box of crackers was $4.79. DH has had his hours cut, and we have some medical bills that are killing us from the septoplasty/sinus surgery I had in May. We can't afford this stuff.

I figured that, after all that money, this food had better taste good. After eating some of it, though, I realize the only similarity to regular food is that it looks the same. It tastes like *crap*. I don't know how anyone eats it. I tried some Van's blueberry waffles for breakfast yesterday. They smelled good, but fell apart as soon as I cut into them and tasted mealy. I tried a GF pizza crust recipe for dinner last night, and that tasted mealy too, even though everyone who reviewed it online said it "tasted like the real thing". I tried some Perky O's cereal this morning, and frankly, I think sweaty gym socks would taste better. DH tried one and said, "Gross! How are you supposed to be happy and stress free if you're supposed to eat this kind of crap?!" My thoughts, exactly. Does any GF stuff taste just like the regular food or am I nuts in expecting it to? I am used to eating bland foods, too. I love things like Cheerios, oatmeal, and whole wheat pasta.

I posted on a coupon board I frequent to ask if a GF diet was possible on a budget. I got a few suggestions, but I also heard from people saying that I had to completely disinfect my kitchen, buy a new toaster, and throw out anything containing gluten to prevent contamination. How in the heck is my DH supposed to eat, then?

Then someone else said that, since I'm hypothyroid, I should also avoid broccoli, cabbage, cauliflower, corn, flax, garlic, horseradish, kale, lima beans, millet, peaches, peanuts, pears, peas, potatoes, radishes, spinach, strawberries, sweet potatoes, turnips, wasabi, and watercress. A lot of this GF stuff is based on corn, I've noticed, so what to do if I can't have corn? I love garlic, peaches, pears, potatoes, and strawberries. This is just seeming impossible right now. I'm at the point where I won't have a diet left if I start avoiding all these foods.

A few other people suggested I give up dairy, too. All the best stuff has cheese, for goodness sake! My doc did test me for dairy intolerances, and everything came back fine. He hasn't told me to avoid anything due to being hypo. Actually, I wish I were lactose intolerant instead so I could pop a Lactaid and eat whatever I wanted. Why can't something like that be invented for people with wheat intolerances, anyway?

I am a super picky eater and I just have to have good tasting items to replace my usual food which hopefully doesn't cost an arm and a leg. I love to cook, so that's no problem.

I have eaten a GF diet for 4 days now and feel no different. I very rarely had stomach problems in the first place. Could I just eat regular, gluten containing food, and cut my consumption in half? That I am willing to do. Eating (and paying dearly for) this nasty tasting stuff I can't do. I nearly threw up a couple of times while eating it. My doc told me to avoid stress, but I am completely stressed over this. I can't sleep and I've cried quite a bit over the past few days, which is not like me. TIA in advance for reading and for any assistance!

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