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gluten-free One Year And Crazy


Debbie-in-the-warp

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Debbie-in-the-warp Newbie

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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Crystal Brown Rookie
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

ang1e0251 Contributor

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!

Hummingbird4 Explorer

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:

missy'smom Collaborator

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.

ShayFL Enthusiast

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.....

CeliacMom2008 Enthusiast

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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MyMississippi Enthusiast

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

CCR Newbie

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

Debbie-in-the-warp Newbie
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.

Debbie-in-the-warp Newbie
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! ;)

Debbie-in-the-warp Newbie
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. ;)

Debbie-in-the-warp Newbie
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:

missy'smom Collaborator

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.

MyMississippi Enthusiast
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:

Debbie-in-the-warp Newbie
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!

Piccolo Apprentice

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

RiceGuy Collaborator

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.

mftnchn Explorer

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.

missy'smom Collaborator

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.

CCR Newbie

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!

Debbie-in-the-warp Newbie
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

Debbie-in-the-warp Newbie
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

RiceGuy Collaborator
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.

Debbie-in-the-warp Newbie
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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      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
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