Questions From A Celiac Newbie

[Karen B.]

Dear Karen,

I agree that Emily should eat purer foods when possible. In the beginning, your system is more sensitive. You have to do it a little at a time. I was ecstatic there were things I could have that are not something I have to cook myself! It is exhausting having to make everything if you are like me and on a budget. I must say that if people can buy everything organic, it is best. I would if I could!

Thank you for posting the gluten-free lists for Wendy's and MacDonald's! I do not know if I will ever be brave enough to attempt eating out, though! I am scared to death of cc! I have too violent a reaction to gluten! Unless I can actually stand over the people preparing the food, I don't feel I can trust them! They do not understand the protocol.

Sincerely,

NoGluGirl

When I was first diagnosed, I got stuck on the other side of town, was very hungry, didn't know what I could have and I was so frustrated I was almost in tears. The amount of infomation you have to absorb at first is so overwhelming. (it gets better)

Then, I remembered being told about how McDonalds had re-tooled their line to eliminate the possibility of people cooking McNuggets in the french fry grease and that person had told me about McDonalds grilled chicken breast being gluten free. I pulled into a McDonalds and asked for their gluten free chicken breast. The kid behind the counter didn't know what I was talking about but he knew enough to direct me to his manager. She knew exactly what I was talking about, said they had covered it in manager training and she watched my chicken breast like a hawk to make sure it didn't touch where bread had been. I've since found that not all McDonalds managers are so stellar, but in four years, I haven't had a problem (eat there about once every 3 months). Just make sure you talk to a manager because most of the kids at the register are clueless.

When I was first diagnosed, I was so anemic they were talking about transfusions but thankfully it didn't get that bad. My standard lunch for several months was a Tasty Bites spinach or lentils, mozzarella cheese and brown rice or corn tortillas. It was sky high in iron and I didn't have to think about it.

If you can prepare all your own food, that's great. It's the best way to go. But I think I would have blown a gasket if I'd had to start cooking all my food from scratch at that time. It was a very high stress time before the Celiac diagnosis (10-12 hour days at work and a family member with Alzheimer's) and it didn't lighten up much after. Life doesn't always give you a break when you need one. At first, I relied on prepared food that stated "GLUTEN FREE" and some food prepared from scratch. Now, I've gotten more time to do things like make bread, chebe rolls and so forth.

[grey]

I've definately gotten the feeling that family and friends think I'm being overly paranoid.

But I think that they're also still coping with the diagnosis and the unexpectedness of it. They knew I was sick but I don't think they thought I would even diagnosed with something (nor did I). Secretly, I suspect some of my family members thought I was a hypochondriac, and not really sick at all. I wish we could just be miraculously better! But it is pretty miraculous that food will make us better...

Have you discovered the gluten-free blogs? I really like some of them - Open Original Shared Link for example has some extraordinary food and an amazing attitude towards gluten-free (her earliest 05 posts are about starting gluten-free). She links to other gluten-free blogs on the left. I like the way some of them talk about gluten-free food and eating, they revel in it and it's not about deprivation at all. glutenfreegirl has a book coming out in October that I'm going to buy.

I would be lost without this community, I think. (and I'm so impressed you've gotten to checking your lipstick - I just haven't been wearing any )

It definitely is. It's really helpful to hear that other people are going through the same thing with the same symptoms. Some of my family members are questioning whether or not I have celiac disease since I'm not miraculously better right away. I explain that many others have the same symptoms I do and have been diagnosed and are attempting to be gluten free as well. The advice about how to clean out your kitchen and get rid of hidden gluten in your lifestyle is helpful as well. I think some of my family members don't believe that even a small amount of gluten will cause me to remain sick. I get the feeling that they think I'm overly paranoid since I'm checking my shampoos and lipsticks and hairsprays. It's great to talk with people who understand and can provide helpful advice.

[Karen B.]

It definitely is. It's really helpful to hear that other people are going through the same thing with the same symptoms. Some of my family members are questioning whether or not I have celiac disease since I'm not miraculously better right away. I explain that many others have the same symptoms I do and have been diagnosed and are attempting to be gluten free as well. The advice about how to clean out your kitchen and get rid of hidden gluten in your lifestyle is helpful as well. I think some of my family members don't believe that even a small amount of gluten will cause me to remain sick. I get the feeling that they think I'm overly paranoid since I'm checking my shampoos and lipsticks and hairsprays. It's great to talk with people who understand and can provide helpful advice.

A broken arm doesn't heal right away, a burn doesn't heal right away, why should a damaged gut and immune system be magical? Just because you can make yourself sick with a single meal, it doesn't follow that you can make yourself well with a single meal. Healing always takes more time than getting hurt.

My sister has had a wheat allergy for at least a decade so she "got it" but my Mom didn't understand until she was diagnosed a year later and had a crash course in going gluten-free. My brother will never understand, he thinks you should force your body to deal with it (like that works). People at work, some understand and some are hopeless. My favorite comment from someone that would leave bread crumbs scattered everywhere from her morning toast was "Well, isn't it better to leave them there so you know where they are, instead of cleaning them up?" LOL

Having Celiac is like an instant lesson in the total cluelessness of some people.

[NoGluGirl]

Dear grey, Emily Elizabeth, and lins,

Relatives are not understanding about this much of the time. I tell mine, you can destroy your intestines, but not mine! There are many sources of cross-contamination you need to be aware of. You will need new utensils, pots, pans, and need to check the status on your cleaners and everything else. I found out Brillo Soap Pads are safe! I am happy! The list I gave is basic, but it should be a good start.

Sincerely,

NoGluGirl

P.S. If you have questions, feel free to ask away!

[standyk]

NoGluGirl,

Are the fat free dressings the only gluten-free dressings from Kraft that are safe? I read somewhere that Kraft Ranch

dressing is gluten-free and I have been using it.

Thanks for all your research

Sandy

[grey]

Argh! I never even thought about household cleaners. But *of course* dish soap! And I don't have a dishwasher even. I just checked the bottle and the ingredients mean nothing to me yet. Is there a list somewhere that y'all could point to?

Mine is Ultra Palmolive zesty lemon antibacterial. Palmolive is closed today, of course.

thanks for all the help & support to everybody!

[Emily Elizabeth]

A broken arm doesn't heal right away, a burn doesn't heal right away, why should a damaged gut and immune system be magical?

I love that analogy. I'm going to use that when I try and explain this to people (and to myself!).

[NoGluGirl]

Argh! I never even thought about household cleaners. But *of course* dish soap! And I don't have a dishwasher even. I just checked the bottle and the ingredients mean nothing to me yet. Is there a list somewhere that y'all could point to?

Mine is Ultra Palmolive zesty lemon antibacterial. Palmolive is closed today, of course.

thanks for all the help & support to everybody!

Dear grey,

I use Dawn. All of their dish soaps are safe. The Power Disolver is also! I am also happy to report Brillo Soap Pads are safe! I found out last week!

Sincerely,

NoGluGirl

[loco-ladi]

I also lost weight quickly after becoming totally gluten-free not long ago. My hubby is enjoying having a almost skinny wife back, when we met I was skinny but over the last 6 years had gained so much I didn't even recognise myself! I did find however it wasn't so much weight that I lost only a few pounds in actuallity but I lost many many inches which is GREAT!

Currently I am seeking gluten-free multi vitamins to make sure I am healthy as a gluten-free skinny person.

I missed my cream of wheat and oatmeal and am not expirimenting with new possibilties.... bobs red mill has a "wicked good gluten-free hot cereal" which isnt to bad, kinda a cross between the two, will keep it in the cupboard, hubby even likes it!

[Karen B.]

I also lost weight quickly after becoming totally gluten-free not long ago. My hubby is enjoying having a almost skinny wife back, when we met I was skinny but over the last 6 years had gained so much I didn't even recognise myself! I did find however it wasn't so much weight that I lost only a few pounds in actuallity but I lost many many inches which is GREAT!

Currently I am seeking gluten-free multi vitamins to make sure I am healthy as a gluten-free skinny person.

I missed my cream of wheat and oatmeal and am not expirimenting with new possibilties.... bobs red mill has a "wicked good gluten-free hot cereal" which isnt to bad, kinda a cross between the two, will keep it in the cupboard, hubby even likes it!

Have you tried the Alti Plano Gold instant hot quinoa cereals? I tried a box of Apple Raisin that I picked up at a local health food store and Hubby and I both liked it so much that we ordered a bunch, including a variety pack. I gave some to my Mom to try and we combined our orders this weekend to get free shipping. I like having an instant cereal available again and it tastes great. I will admit to adding a bit of maple syrup to it, maybe a handful of trail mix, sometimes fruit. It's comparable to oats in fiber content.

Open Original Shared Link

[NoGluGirl]

NoGluGirl,

Are the fat free dressings the only gluten-free dressings from Kraft that are safe? I read somewhere that Kraft Ranch

dressing is gluten-free and I have been using it.

Thanks for all your research

Sandy

Dear Sandy,

Others are safe as well. I just use the Fat-free because I have to go low on my fat intake. Many of the regular full-fat versions and light dressings are safe as well. As long as you read the label, and gluten is not mentioned, it is safe! Kraft has been great about labeling for the past 13 years! You are very welcome for the info!

Sincerely,

NoGluGirl

[NoGluGirl]

I also lost weight quickly after becoming totally gluten-free not long ago. My hubby is enjoying having a almost skinny wife back, when we met I was skinny but over the last 6 years had gained so much I didn't even recognise myself! I did find however it wasn't so much weight that I lost only a few pounds in actuallity but I lost many many inches which is GREAT!

Currently I am seeking gluten-free multi vitamins to make sure I am healthy as a gluten-free skinny person.

I missed my cream of wheat and oatmeal and am not expirimenting with new possibilties.... bobs red mill has a "wicked good gluten-free hot cereal" which isnt to bad, kinda a cross between the two, will keep it in the cupboard, hubby even likes it!

Dear loco_ladi,

I was not able to lose a pound before going gluten-free, either! I never had trouble with my weight before. I always could just cut back on the fat and calories, and lose weight. Your body tends to try to protect your organs by filling your abdomen with fluid when you are a Celiac and eat gluten. It is a defense mechanism. The bloating it causes can be so uncomfortable! I got so ill after eating oatmeal, and could not figure out why. I will not ever eat it again!

Sincerely,

NoGluGirl

[NoGluGirl]

Have you tried the Alti Plano Gold instant hot quinoa cereals? I tried a box of Apple Raisin that I picked up at a local health food store and Hubby and I both liked it so much that we ordered a bunch, including a variety pack. I gave some to my Mom to try and we combined our orders this weekend to get free shipping. I like having an instant cereal available again and it tastes great. I will admit to adding a bit of maple syrup to it, maybe a handful of trail mix, sometimes fruit. It's comparable to oats in fiber content.

Open Original Shared Link

Dear Karen,

I think these sound good! Thank you for the link! It is good to have some other options besides eggs for breakfast! You have to watch eating the same things too often, too, because you can develop new allergies. I am checking this out!

Sincerely,

NoGluGirl

[Elaine Allen]

Hi!!

I'm so thankful to have a message board to go to! I was confirmed to have Celiac earlier this week, after blood tests and a biopsy. I've gotten the Gluten-Free for Dummies book and am learning a lot and appreciate her humor. As far as I know, I have been gluten-free since last Friday. And I have some questions if you would be so kind...

I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. )

I know I had more questions swirling around, but am at a loss right now. While the thought of no more pizza from my favorite local joint is a bummer, I can't help but be very excited about feeling better! I was lucky enough to be diagnosed within a month of seeing a doctor, although I waited for over a year before seeking help. Still, I see from research that people suffer for YEARS!

I look forward to the info, and hope I can get to a point where I can offer some advice too. Thanks in advance all!

Lins

[Elaine Allen]

Hi!!

I'm so thankful to have a message board to go to! I was confirmed to have Celiac earlier this week, after blood tests and a biopsy. I've gotten the Gluten-Free for Dummies book and am learning a lot and appreciate her humor. As far as I know, I have been gluten-free since last Friday. And I have some questions if you would be so kind...

I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. )

I know I had more questions swirling around, but am at a loss right now. While the thought of no more pizza from my favorite local joint is a bummer, I can't help but be very excited about feeling better! I was lucky enough to be diagnosed within a month of seeing a doctor, although I waited for over a year before seeking help. Still, I see from research that people suffer for YEARS!

I look forward to the info, and hope I can get to a point where I can offer some advice too. Thanks in advance all!

Lins

[Elaine Allen]

Hi!!

I'm so thankful to have a message board to go to! I was confirmed to have Celiac earlier this week, after blood tests and a biopsy. I've gotten the Gluten-Free for Dummies book and am learning a lot and appreciate her humor. As far as I know, I have been gluten-free since last Friday. And I have some questions if you would be so kind...

I gained weight prior to diagnosis. Have any of you lost weight? Like in just a couple of days?? I could see where I would lose weight what with only eating fruits, veggies, lean meats, ets. But it seems to be making a huge difference very quickly.

Am I detoxing simply by being gluten free? My hair is different and my skin is different.

What's the deal with modified food starch?

Oatmeal is just a bad idea, right?

What good cereals have you tried?? (I miss my cereal. )

I know I had more questions swirling around, but am at a loss right now. While the thought of no more pizza from my favorite local joint is a bummer, I can't help but be very excited about feeling better! I was lucky enough to be diagnosed within a month of seeing a doctor, although I waited for over a year before seeking help. Still, I see from research that people suffer for YEARS!

I look forward to the info, and hope I can get to a point where I can offer some advice too. Thanks in advance all!

Lins

[Elaine Allen]

Welcome to the world without Gluten! I am new at this also. Just been diagnosted as of March 14 of this yr. (I am 61)

I still feel over whaled at times. For me, the toughest thing so far is eating out. We live in a small town in Ky. and I have yet to met another Celiac person.

This forum is wonderful. I can find out answers to almost all your questions here.

I also ordered the Gluten free for Dummies. I am trying to learn how to read labels and be able

to spot the words that indicate gluten. Be patient. After 2 months, I am beginning to feel so much better. BYW, one book that I really have found very good is Celiac Disease, a Hidden Epidemic, by Dr. Peter Green & Rory Jones. (Another is The Gluten Free Diet by Shelly Case)

Feel free is email me. I am new at this also.

BYW, I found the Wild Oats Store to be a great place to shop for gluten free foods.

Hang in there! It does it easier. Elaine

[happygirl]

Hope that this list will help:

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, ConAgra, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hershey, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Smucker, Stokely's, Sunny Delight, T Marzetti, Tyson, Unilever, Wishbone, Yoplait, Zatarain's.

This is a list of companies that will clearly list any gluten ingredients, and won't hide them (in flavors, starch, etc). These companies have a policy that makes it easier to read labels and not worry. Carry this list with you, and when you go to look at something, turn it over to see who it is owned by...you'll be surprised how many are on this list. It makes life a lot easier.

Be careful of relying on "lists of products" that are "safe"---ingredients do change. The # 1 rule/Celic 101 is not to eat anything unless you know what is in it. You ALWAYS have to read the label.

Welcome to all the newbies----we are happy to have you here!!!!!!

[NoGluGirl]

Welcome to the world without Gluten! I am new at this also. Just been diagnosted as of March 14 of this yr. (I am 61)

I still feel over whaled at times. For me, the toughest thing so far is eating out. We live in a small town in Ky. and I have yet to met another Celiac person.

This forum is wonderful. I can find out answers to almost all your questions here.

I also ordered the Gluten free for Dummies. I am trying to learn how to read labels and be able

to spot the words that indicate gluten. Be patient. After 2 months, I am beginning to feel so much better. BYW, one book that I really have found very good is Celiac Disease, a Hidden Epidemic, by Dr. Peter Green & Rory Jones. (Another is The Gluten Free Diet by Shelly Case)

Feel free is email me. I am new at this also.

BYW, I found the Wild Oats Store to be a great place to shop for gluten free foods.

Hang in there! It does it easier. Elaine

Dear Elaine,

Most of my family is from a small town in Kentucky! My grandparents are from Eddyville! There are not a lot of gluten-free places out there, I am sure. I know a place you can get some great cake mixes and candy that is for Celiacs.

Go to www.choclat.com and get some goodies! The Chocolate Emporium has some good stuff!

Sincerely,

NoGluGirl

[Lins]

Thanks a bunch for the safe foods NoGluGirl and HappyGirl! I snagged that list you posted on a different thread, NoGlu, and really appreciate the information.

I am still chugging along, and believe I should invest in the other book everyone is talking about, the "Hidden Epidemic" one. I saw my GI Doc last night for the first time after the biopsy. He told me a little more of the same stuff I'd gathered in chatting with you all and/or found on my own. I thanked him for taking care of this so quickly considering how long many of you have had to suffer. Next stop is the Dietician. We just had our local organic/health food store expand to a much bigger building. I think I may stop over there on my lunch hour. I got some of that Bob's cereal. It wasn't bad. I threw in some Vanilla soy milk and a little Splenda. Ahhh. Everyone has been great about the cereal information too. I tried that Crisped Rice cereal with Mickey Mouse on it. I actually think it bothered me as I was all puffed up and miserable for a couple days. On the other hand, many of you are saying it can take a few months to get to feeling a lot better, so maybe this is just something I have to work through. The hot cereal doesn't seem to bother me and I got some Nutty Rice somethin-or-other cereal last week and I love it. (You'd think I'd remember the brand names so I could share too! Helloooo???) Will try harder, I promise!

I am running into the occasional problem as I also am allergic to tree nuts. But as I read labels more and more, I see I'm certainly not the only one!! Ya'll don't wanna know what happens to me if I crunch down on a walnut. Shudder... Thank goodness I can have peanuts tho!

Thanks again,

Lins

[NoGluGirl]

Thanks a bunch for the safe foods NoGluGirl and HappyGirl! I snagged that list you posted on a different thread, NoGlu, and really appreciate the information.

I am still chugging along, and believe I should invest in the other book everyone is talking about, the "Hidden Epidemic" one. I saw my GI Doc last night for the first time after the biopsy. He told me a little more of the same stuff I'd gathered in chatting with you all and/or found on my own. I thanked him for taking care of this so quickly considering how long many of you have had to suffer. Next stop is the Dietician. We just had our local organic/health food store expand to a much bigger building. I think I may stop over there on my lunch hour. I got some of that Bob's cereal. It wasn't bad. I threw in some Vanilla soy milk and a little Splenda. Ahhh. Everyone has been great about the cereal information too. I tried that Crisped Rice cereal with Mickey Mouse on it. I actually think it bothered me as I was all puffed up and miserable for a couple days. On the other hand, many of you are saying it can take a few months to get to feeling a lot better, so maybe this is just something I have to work through. The hot cereal doesn't seem to bother me and I got some Nutty Rice somethin-or-other cereal last week and I love it. (You'd think I'd remember the brand names so I could share too! Helloooo???) Will try harder, I promise!

I am running into the occasional problem as I also am allergic to tree nuts. But as I read labels more and more, I see I'm certainly not the only one!! Ya'll don't wanna know what happens to me if I crunch down on a walnut. Shudder... Thank goodness I can have peanuts tho!

Thanks again,

Lins

Dear Lins,

I am glad my information was useful to you! It is so important we find things we can have. This can be so frustrating in the beginning. Tree nuts are a problem for many people. Peanuts are legumes. That may be why you tolerate them, but not walnuts.

Sincerely,

NoGluGirl