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gluten-free One Year And Crazy

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I am new to this board. I have been gluten-free for one year now and I am so sick of this disease. I want to eat food like everyone else. I have lost 50 pounds in a year and am at 98 pounds now shopping in the pre-teen section. I know most of the celiac stores to go to but I hate most of the food. I am trying to gain weight but it doesn't work. Can someone please tell me this has happened to them? I look like crap and am hungry. I just want to eat food again. I know that will never happen but....how do I deal with this??????

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I am new to this board. I have been gluten-free for one year now and I am so sick of this disease. I want to eat food like everyone else. I have lost 50 pounds in a year and am at 98 pounds now shopping in the pre-teen section. I know most of the celiac stores to go to but I hate most of the food. I am trying to gain weight but it doesn't work. Can someone please tell me this has happened to them? I look like crap and am hungry. I just want to eat food again. I know that will never happen but....how do I deal with this??????

I dropped down to 93 pounds, so I definitely know how you're feeling.

What kind of foods are you buying? What do you normally eat in a day?

The thing I found to cause the biggest problem with weight loss was not eating enough protein. Some nutritionist back when I was first diagnosed told me to eat 3,000 calories a day... But she failed to mention what to eat that would get me up to 3,000 calories. So, I went more than a year not having a clue what to eat and I just doubled up on Starbucks Frappuccinos, thinking those would help me gain weight. Instead, they made me lose it.. I was getting glutened from cross-contamination. Sooooo, once I cut the frapps out and got some excellent advice from a knowledgeable Nutritionist, I was finally on track. I was given the protein information 3 weeks ago... I've already gained 5 pounds.

The other thing to watch out for... the overly processed gluten-free food. God bless the companies for trying, but honestly the options that are pre-made are just downright discouraging and nasty. I've resorted to cooking a lot of my food and have really enjoyed the food since I made the switch.

Let me know if any of this helps.. and I know how you feel about having to buy stuff from the preteen or teen sections. Frustrating. Oh and then everyone thinks your anorexic... Fun stuff :P

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Good advice for all of us! I really find the freedom of cooking my own simple foods so liberating. You must have sufficient proteins to make it. Eat meats at every meal, if you are a meat eater. If not, there are vegans here that can give you good advice. Simply cooked meats, start with salt and pepper, rice and potatoes with the side dishes that are your favorites and gluten-free. Corn tortillas are a great help. I put them in the toaster just like they are bread or in the skillet with butter and cheese melting in the middle. Don't starve... cook and regain your good health!

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Hi Debbie, I'm in Portland, too. There is a support group that meets the 2nd Saturday of the month at Legacy Meridian Park hospital. I haven't attended a meeting yet, but am planning to go soon. Maybe meeting some other Celiacs might help you feel less alone. That's what I'm hoping for. I'm still new to all of this, and definitely still grieving. I actually had a mini meltdown at the beach over the weekend just from hearing some people talk about how to make s'mores. :angry:

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I am also underweight now and trying to gain. I'm trying to get up to 98! I really need new pants but I'm trying not to buy any until I get back up to a certain size! Not doing dairy has caused me to loose alot.

Can you find time to make and freeze things in batches? If I do a make and freeze even one dish a week or every other week I end up with a nice stash of stuff for busy days. It doesn't have to take alot of time. I use an icecream scoop to scoop and plop portions of meatloaf mixture into a muffin pan for individual portions. Doing things assembly line style makes quick work of a task. Dividing a recipe into parts to be done on different days helps too and can sometimes make it seem like less of a chore. Mix up your flours one day, bake another etc.

For the first year or more I felt that there were so few ready made things that I could buy. Eventually I learned that there are alot of things out there that are gluten-free, and things that I like. E-mail companies. Make a few phone calls and check websites of stuff that you used to buy or would like to buy. It seems like so much extra work and is frustrating at first but it's worth it in the end.

I go through ruts every now and then where I'm tired of the same stuff and don't have the mental energy to come up with something new. I've been in those times and ended up just not eating much but with my recent weight loss, I'm just taking my food like medicine and saying"this too shall pass" and know that eventually I'll get some inspiration again. I also tell myself that I just have to eat and that there will be many other meals and some of them will be enjoyable. Not every meal has to be a passionate experience and in many countries, people eat fairly repetitive meals. OK, now I'm sounding like that parent that you don't want to listen to. But we are so influenced by advertising and our culture that I have to redirect my thinking in this way.

Honestly, often I just don't enjoy eating, there are things that I like but they don't have that same kind of enjoyment like foods used to, but I want to grow old and be healthy. I'm trying to find pleasure in other things and savor it when I find it.

If there are specific foods that you'd like let us know and we can help with recipes or product recommendations.

Another thing I do to cope is to make and bring my own to functions and many times it's better than what others have because it's all natural and fresh, this weekend I made a dish that most people these days use a chemical laden mix for but I made it the old-fashioned way and it looked and tasted great and I was proud of myself. Some, who don't know about my food issues looked at me like I'm an overachiever, but that's ok. I got to eat it. Of course I feel left out sometimes, I'm human but it really helps to have my own stuff. That way I just relax and eat and not worry about CC etc. Either way there is some inconvienience to us but I'd rather do the extra work ahead of time and then just relax and enjoy the event with everyone else.

Hang in there, we've been there and are there with you.

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They are right. Protein is very important. I am up nearly 7 pounds from pre gluten-free days (as of this morning). I was way too skinny for my bone structure. I should be curvy and I just looked like bones. I feel more feminine now. :) My boobs no longer look like empty gym socks. :P

I dont like meat for breakfast, so I have nuts and fruit. I eat meat for lunch and dinner. I also eat eggs for snack sometimes.

You will get there.....

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We eat really well around here. I'm not a Celiac, but I eat gluten-free 99% of the time and I am far from starving. What helped me a lot when we first started last December was making a big list of all the food I knew how to make (I wasn't much of a cook pre-diagnosis). Then I went through to see what was still OK and what needed adjusting. You asked what we were eating. Well here's some of our regulars that are easy to make, great as leftovers and pretty fattening :D :

Meatloaf, mashed potatoes, mixed veggies (frozen kind), applesauce

Turkey, mashed pototaes, any cooked vegetable, canned fruit

Grilled chicken (sprinkled with Lawrys seasoning salt, marinated in Wishbone Ital., or a big favorite around here - use skin on, bone in chicken, put apple slices under skin, brush with olive oil, sprinkle with Lawrys - OH YUM!), grilled veggies (I marinate for a couple minutes in Wishbone Italian dressing and people rave like they're some gourmet thing. Our favorites are portabella mushrooms, Roma tomatoes, zucchini, yellow squash, asparagus, bell peppers - use whatever you can find fresh.)

Roast with potatoes, carrots, mushrooms, and beans - leftovers are great as is, but you can also take some of the liquid from the roast, add a little cornstarch to thicken it up a bit, cut the veggies in chunks, mix it all together and you have stew. This is a good time saver - make the roast on night one, on night two use your cooking time to make a loaf of bread or muffins and serve it with the stew you made the night before while you cleaned up the kitchen.

Chicken and noodles

Spaghetti

Tacos

And I know it's not healthy, but we really like cookies (Whole Foods 365 brand chocolate chip mix or Gluten Free Sensations are our favs) and cake (Kinnikinnick).

I can't speak for those who have multiple food issues, but gluten free does NOT mean you have to give up good food. We eat so much better now than before. When my husband and I go out to a restaurant I am usually so disappointed in the taste of the gluten food. Case in point - I went out to my old favorite pizza place last weekend and after two bites of my pizza I said, "I'm making good pizza later this weekend." That would be gluten free good pizza! I have become a food snob!!

Hang in there and don't settle for not enjoying eating! It's true, you should eat to live, but you can have a little fun while you're doing it! :)

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How about some home made fruit smoothie thingie made with REAL full fat Hagen Daz vanilla bean ice cream ! Yummo !

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Hi Debbie,

I am so sorry to hear how unhappy you are. I am only gluten-free for 3 months and I'm still pretty sad, too. My problem, however, has always been being overweight and that has not changed from giving up gluten. I guess we are all different in the way this disease affects us.

Anyway, just sending some encouragement your way.

Carin

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I dropped down to 93 pounds, so I definitely know how you're feeling.

What kind of foods are you buying? What do you normally eat in a day?

The thing I found to cause the biggest problem with weight loss was not eating enough protein. Some nutritionist back when I was first diagnosed told me to eat 3,000 calories a day... But she failed to mention what to eat that would get me up to 3,000 calories. So, I went more than a year not having a clue what to eat and I just doubled up on Starbucks Frappuccinos, thinking those would help me gain weight. Instead, they made me lose it.. I was getting glutened from cross-contamination. Sooooo, once I cut the frapps out and got some excellent advice from a knowledgeable Nutritionist, I was finally on track. I was given the protein information 3 weeks ago... I've already gained 5 pounds.

The other thing to watch out for... the overly processed gluten-free food. God bless the companies for trying, but honestly the options that are pre-made are just downright discouraging and nasty. I've resorted to cooking a lot of my food and have really enjoyed the food since I made the switch.

Let me know if any of this helps.. and I know how you feel about having to buy stuff from the preteen or teen sections. Frustrating. Oh and then everyone thinks your anorexic... Fun stuff :P

I want to thank you for the laugh about the pre-teen section...yeah, it's true!!! I have been trying to eat anything and everything but no luck. I will try even more protein...thanks! Someone I kinda know seen me last week and yells out" Would you eat something already!" and I felt like (well, first hitting him) saying "I would if I could you jerk!!!

Anyway, have a good day.

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Hi Debbie, I'm in Portland, too. There is a support group that meets the 2nd Saturday of the month at Legacy Meridian Park hospital. I haven't attended a meeting yet, but am planning to go soon. Maybe meeting some other Celiacs might help you feel less alone. That's what I'm hoping for. I'm still new to all of this, and definitely still grieving. I actually had a mini meltdown at the beach over the weekend just from hearing some people talk about how to make s'mores. :angry:

I believe I called legacy and the group no longer meets. There are some chapters of the "Gluten Intolerence Group" that meet around here though. Thank you for the reply. I love (loved?) smores! ;)

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I am also underweight now and trying to gain. I'm trying to get up to 98! I really need new pants but I'm trying not to buy any until I get back up to a certain size! Not doing dairy has caused me to loose alot.

Can you find time to make and freeze things in batches? If I do a make and freeze even one dish a week or every other week I end up with a nice stash of stuff for busy days. It doesn't have to take alot of time. I use an icecream scoop to scoop and plop portions of meatloaf mixture into a muffin pan for individual portions. Doing things assembly line style makes quick work of a task. Dividing a recipe into parts to be done on different days helps too and can sometimes make it seem like less of a chore. Mix up your flours one day, bake another etc.

For the first year or more I felt that there were so few ready made things that I could buy. Eventually I learned that there are alot of things out there that are gluten-free, and things that I like. E-mail companies. Make a few phone calls and check websites of stuff that you used to buy or would like to buy. It seems like so much extra work and is frustrating at first but it's worth it in the end.

I go through ruts every now and then where I'm tired of the same stuff and don't have the mental energy to come up with something new. I've been in those times and ended up just not eating much but with my recent weight loss, I'm just taking my food like medicine and saying"this too shall pass" and know that eventually I'll get some inspiration again. I also tell myself that I just have to eat and that there will be many other meals and some of them will be enjoyable. Not every meal has to be a passionate experience and in many countries, people eat fairly repetitive meals. OK, now I'm sounding like that parent that you don't want to listen to. But we are so influenced by advertising and our culture that I have to redirect my thinking in this way.

Honestly, often I just don't enjoy eating, there are things that I like but they don't have that same kind of enjoyment like foods used to, but I want to grow old and be healthy. I'm trying to find pleasure in other things and savor it when I find it.

If there are specific foods that you'd like let us know and we can help with recipes or product recommendations.

Another thing I do to cope is to make and bring my own to functions and many times it's better than what others have because it's all natural and fresh, this weekend I made a dish that most people these days use a chemical laden mix for but I made it the old-fashioned way and it looked and tasted great and I was proud of myself. Some, who don't know about my food issues looked at me like I'm an overachiever, but that's ok. I got to eat it. Of course I feel left out sometimes, I'm human but it really helps to have my own stuff. That way I just relax and eat and not worry about CC etc. Either way there is some inconvienience to us but I'd rather do the extra work ahead of time and then just relax and enjoy the event with everyone else.

Hang in there, we've been there and are there with you.

Thank you for the great idea of cooking and freezing stuff. I am just starting to cook now. I have been using the pre-made stuff that is gluten-free in the stores because I have other health issues and have little energy. I think I have 2 friends who might be willing to help a little so that is a relief. I also am lactose intolerant but found some pills at K-mart I take once a day which seems to deal with that problem. It opened up the door for me on so many other foods. I appreciate you taking the time to write back. ;)

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How about some home made fruit smoothie thingie made with REAL full fat Hagen Daz vanilla bean ice cream ! Yummo !

IS HAAGAN DAZ gluten-free????????????????????????????????????? PLEASE TELL ME YES!!!!!!!! :blink:

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I totally understand about not having energy. I was undiagnosed for 8 years and it has taken a while to feel better and get my energy back. Right around two years into this now I can say that I feel pretty normal everyday. I think that as you are able to cook more, you will find that food is much more enjoyable. The gluten-free products help out but homecooked is much better and you may feel better and more energetic eating homemade too.

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IS HAAGAN DAZ gluten-free????????????????????????????????????? PLEASE TELL ME YES!!!!!!!! :blink:

I'm sure it is--- it only has about 4 ingredients ------ milk, sugar, eggs, vanilla bean, etc.

and it is to die for ! :lol:

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They are right. Protein is very important. I am up nearly 7 pounds from pre gluten-free days (as of this morning). I was way too skinny for my bone structure. I should be curvy and I just looked like bones. I feel more feminine now. :) My boobs no longer look like empty gym socks. :P

I dont like meat for breakfast, so I have nuts and fruit. I eat meat for lunch and dinner. I also eat eggs for snack sometimes.

You will get there.....

Thank you, you look great!

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Hay everyone!

I can relate to the weight issue also. I struggle to reach 80. Have no fear I have been this weight for years. I only passed 80 when I was pregnant.

I have a lot of nut butters as my calories and protein. I enjoy a variety that includes Brazil, Macadamia, Hazelnut and pecan as well as the usual almond, cashew, and peanut butter.

As long as I keep the calories up I maintain. Should my calories dip I loose. Another thing that I eat and really like is dried fruit, pineapple is my favorite.

Hope this helps.

Susan

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Lots of good advice thus far. I will add that it is possible that something you're eating is keeping your weight down. I don't know if you drink coffee, but it is a diuretic. Not only does it cause you to lose nutrients, but water. Also, it is entirely possible that lactose isn't the only trouble with dairy for you. I'm sure you don't want to hear it right now, but it is true for many of us. So it's just good to be certain one way or the other.

Truly, there's no reason to feel restricted on a gluten-free diet. I can honestly say I have WAY more variety than I used to before going gluten-free. I find it a lot of fun to explore new foods and flavors. There's nothing boring about it. And this is with more foods off my list than I had before. I prepare all my foods from scratch, and it's a lot of fun. Besides gluten, the other things I avoid include all animal products (meat, poultry, fish, dairy, eggs, etc), sugar (also honey, molasses, syrups, etc), yeast (no yeast breads, mushrooms, etc), vinegars (no mayo, ketchup, etc), most corn, raw apples, nightshades (tomatoes, potatoes, peppers, eggplant, paprika, etc), and canola. Occasionally I discover more, but there are always yummy alternatives. We just need to look for them instead of what we've left behind. I'm not saying it's easy for everyone. It's obviously not, but I think it's more about breaking out of the cultural box than anything else.

For a nutritious high protein breakfast, consider teff. Just 1/4 cup has 12 grams of protein. By comparison, an egg has only 7 grams. Teff IMO makes a yummy hot cereal, not to mention that teff flour is suited for baking all sorts of things. Amaranth is another high protein grain.

Some supplements can also help give your body the tools it needs to utilize the food you eat. It may be that certain nutrients just aren't getting absorbed well enough. Probiotics can help boost the digestive process too.

Maybe it would help to list some of the things you generally eat. I'm sure you'll get even more great tips.

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I agree with others here. I don't find the gluten-free prepared foods very palatable, other than a few cookies. But I found some things to bake that are really good.

Cakes, such as carrot cake are wonderful. My non gluten-free friends think it tastes wonderful. Flax seed bread (my version is based on Lorka's bread recipe adjusted for what is available to me) is really good especially fresh.

Nuts, cashew cheese (sounds really weird but is quite tasty) makes a great milk free snack on veggies or crackers or even in place of cheese in some dishes.

Are you in a place where some family members could help you with cooking for awhile until you start to feel more energetic?

Also some supplements might help your energy, very likely you are missing some nutrients due to malabsorption.

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Thanks for mentioning the supplements and probiotics Riceguy. I stopped taking mine in the same time period that my weight dropped off quite a bit. That particular formula and brand worked for well me for years but were bothering me and I felt better without them but I just need to get out and buy another one and start again and see if that helps.

Debbie, I highly recommend supplements also. I really needed them and they helped alot. I took a powdered form for a long time as it was more easily digested and absorbed. Some take liquid for the same reason.

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I actually contacted Haagen-Daz early on and they have many gluten-free flavors. They mailed me an info sheet in response to my phone query and some coupons, too. :)

The flavors that DO contain gluten (in the superpremium category) are:

Caramel Cone

Cookie Dough

Cookies and Cream

Sticky Toffee Pudding

The rest are fine. The light version is fine except for Caramel Cone.

If you have a specific flavor in mind, I'll look on my sheet for you. But if you call the company, maybe you'll get coupons!

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Lots of good advice thus far. I will add that it is possible that something you're eating is keeping your weight down. I don't know if you drink coffee, but it is a diuretic. Not only does it cause you to lose nutrients, but water. Also, it is entirely possible that lactose isn't the only trouble with dairy for you. I'm sure you don't want to hear it right now, but it is true for many of us. So it's just good to be certain one way or the other.

Truly, there's no reason to feel restricted on a gluten-free diet. I can honestly say I have WAY more variety than I used to before going gluten-free. I find it a lot of fun to explore new foods and flavors. There's nothing boring about it. And this is with more foods off my list than I had before. I prepare all my foods from scratch, and it's a lot of fun. Besides gluten, the other things I avoid include all animal products (meat, poultry, fish, dairy, eggs, etc), sugar (also honey, molasses, syrups, etc), yeast (no yeast breads, mushrooms, etc), vinegars (no mayo, ketchup, etc), most corn, raw apples, nightshades (tomatoes, potatoes, peppers, eggplant, paprika, etc), and canola. Occasionally I discover more, but there are always yummy alternatives. We just need to look for them instead of what we've left behind. I'm not saying it's easy for everyone. It's obviously not, but I think it's more about breaking out of the cultural box than anything else.

For a nutritious high protein breakfast, consider teff. Just 1/4 cup has 12 grams of protein. By comparison, an egg has only 7 grams. Teff IMO makes a yummy hot cereal, not to mention that teff flour is suited for baking all sorts of things. Amaranth is another high protein grain.

Some supplements can also help give your body the tools it needs to utilize the food you eat. It may be that certain nutrients just aren't getting absorbed well enough. Probiotics can help boost the digestive process too.

Maybe it would help to list some of the things you generally eat. I'm sure you'll get even more great tips.

Thanks for writing. I find I have the most in common with your diet as I cannot eat too much protein or sugar for other health reasons. I would like to know more of what you eat to work around that if you wouldn't mind. I can't drink caffeine of any nature so that's not a problem for me. I have been eating alot of prepared gluten-free foods due to me feeling too crappy to cook. I eat alot of gluten-free Rice Crispies w/o sugar, gluten-free banana bread and cream biscuits, some gluten-free meal bars, some fruit when I can handle that sugar( I have Parkinsons) and asparagus. I also eat the gluten-free mac and cheese. Really, that's about it.Alot of things upset my stomach and I am waiting on the results of my food allergy test my doctor ran as we speak. I am always in abdominal pain it seems and am even seeing a chronic pain specialist for it because it is unbearable. If you had any suggestions I would sure love to hear them.

Thanks so much,

Debbie

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I agree with others here. I don't find the gluten-free prepared foods very palatable, other than a few cookies. But I found some things to bake that are really good.

Cakes, such as carrot cake are wonderful. My non gluten-free friends think it tastes wonderful. Flax seed bread (my version is based on Lorka's bread recipe adjusted for what is available to me) is really good especially fresh.

Nuts, cashew cheese (sounds really weird but is quite tasty) makes a great milk free snack on veggies or crackers or even in place of cheese in some dishes.

Are you in a place where some family members could help you with cooking for awhile until you start to feel more energetic?

Also some supplements might help your energy, very likely you are missing some nutrients due to malabsorption.

I wish I had some family right now! I have one friend who is pretty busy himself but tries when he can. I am having trouble with abdominal pain and the supplements are hurting. I am waiting on results of my food allergy test. Thank you for writing.

~Debbie

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Thanks for writing. I find I have the most in common with your diet as I cannot eat too much protein or sugar for other health reasons. I would like to know more of what you eat to work around that if you wouldn't mind. I can't drink caffeine of any nature so that's not a problem for me. I have been eating alot of prepared gluten-free foods due to me feeling too crappy to cook. I eat alot of gluten-free Rice Crispies w/o sugar, gluten-free banana bread and cream biscuits, some gluten-free meal bars, some fruit when I can handle that sugar( I have Parkinsons) and asparagus. I also eat the gluten-free mac and cheese. Really, that's about it.Alot of things upset my stomach and I am waiting on the results of my food allergy test my doctor ran as we speak. I am always in abdominal pain it seems and am even seeing a chronic pain specialist for it because it is unbearable. If you had any suggestions I would sure love to hear them.

Thanks so much,

Debbie

Sure, I don't mind at all, and I'm glad to help if I can.

You mentioned supplements and abdominal pains. What supplements are you currently taking? What areas are the pains centered in?

If you have Parkinson's, I'll suggest fava beans (one of the most effective Parkinson's drugs is actually a substance found in fava beans called levodopa). In fact, fava flour is one of my favorite gluten-free flours. It works well in many recipes. I'd also highly recommend a magnesium supplement. The reasons are many, including the fact that magnesium is a cofactor for hundreds of enzymes, some of which are involved in fatty acid synthesis, protein synthesis, and glucose metabolism. Magnesium is also critical for energy production, nerve impulse transmission, muscle contraction, and more. It also strengthens the blood/brain barrier, helping to keep toxins out of the brain.

I think I'd also suggest avoiding dairy, as lactose may not be your only dairy-related problem. Have you tried rice or almond milk? Coconut milk is also good for many things.

Many of the foods you listed are sweetened and/or highly processed. Though not as bad as candy, there are better choices, especially given the way you've been feeling. If you're beginning to cook your own meals, that's great, and it is likely you'll feel better as a result. Until your allergy test results come in, you may not know all the foods to avoid, but millet is one of the least allergenic grains known, and is very nutritious. It works as a hot cereal, and can be used like rice or couscous. There is also millet flour, which can be used in all sorts of things. But grain is far from the only staple food available. It just depends on what your body can work with, and needs most.

Veggies are perhaps the most important foods we have, and the more variety you can eat, the better. The only veggie you mentioned is asparagus, but I hope you're eating many others besides that. Meal preparation need not be a chore though. For instance, you can make a tasty stew with little work. Use frozen veggies for the convenience, and add them once the stew base is done.

Feel free to PM me if you have specific questions, but of course there are many others on the board who are always happy to offer their knowledge and experience.

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I actually contacted Haagen-Daz early on and they have many gluten-free flavors. They mailed me an info sheet in response to my phone query and some coupons, too. :)

The flavors that DO contain gluten (in the superpremium category) are:

Caramel Cone

Cookie Dough

Cookies and Cream

Sticky Toffee Pudding

The rest are fine. The light version is fine except for Caramel Cone.

If you have a specific flavor in mind, I'll look on my sheet for you. But if you call the company, maybe you'll get coupons!

Oh Please let me know if "Dulce De Leche" is gluten-free???? I would love to eat my favorite ice cream again.

Thanks so much!

Debbie

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    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023