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What Do I Thow Out, What Do I Do, Will I Get Better?


F.deSales

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F.deSales Rookie

I am completely lost in all of this. I don't know what I should be doing. I am spending hours on end in my "office" (the rest room) I have been trying to be gluten free for about one month now but don't seem to be getting better. I have lost 20lbs in the past two months. I am tired all the time. I drop things all the time. I can't remember the names of simple things when I look at them. Words come out wrong ... How long will it take for me to get better?

Do I have to really throw out all my kitchen utensils, pots & pans, bread machine, plastic cups and plates? How strict do I have to be? I am really sensitive. I also have allergies to soy, eggs, dairy (all forms).

My husband and son have no allergies. Will their consumption of gluten products bother me? If I make something with gluten for them do I have use a different pot etc ...

OK, I guess you all can tell I am not handling this all very well. With all the other medical problems I have I just am overwhelmed that now I have to deal with this. :unsure:

Is there a book that out there that can help me with out overwhelming me? All this internet researching is getting me very depressed. :blink:

Thanks for letting vent. :rolleyes:

F.deSales


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Eriella Explorer

Hello,

First of all, it does get better and easier. It sounds like you aren't getting the right combination of foods and that you are getting glutenated from the surrounding gluten in your kitchen. You can't eat anything that has touched gluten and you should have separate pots and wooden spoons. Also, you need to make sure that you don't use the same toaster, clean up any crumbs, and wash your hands throughly after touching gluten. Also, you can't use the same bread machine because there is no way to adequately clean it.

What I would do is buy one separate pot and pan, for now, and use them to cook staple foods until you heal: rice, meat, fruits, and vegetables. Live off of those for a month or two and see how you feel. Don't put your pans in the same cabinet as anyone else and make sure you don't consume anything that could have gluten in it or that has touched it. If you are 100% gluten free for a month and don't see any improvement, talk to your doctor.

As far as books, Gluten Free for Dummies and Dr. Green's, Celiac: the hidden epidemic (or something like that), seem to be favorites.

Good Luck!

JennyC Enthusiast

You have to be very careful with cross contamination. Most people replace toasters, waffle irons, cutting boards, wooden spoons, pasta strainers, non-stick pots & pans, all cast iron, and anything that is scratched. Replace anything that you think would be difficult to clean thoroughly. I replaced everything...slowly. Everything that I had was old hand me downs anyway. It made me realize that you can cook with less, you just have to do dishes more often. :P I replaced everything because I didn't want to always worry if my son's tummy ache was because of the pan I used. If you are preparing gluten you should handle it like poison. You could wear plastic gloves so you don't have to worry about gluten getting under your fingernails. You should never put gluten or any glutened utensil directly on any surface and you should wash your hands constantly or change your gloves. I also wash my gluten free dishes first. Have you made sure that all of your higiene products are gluten free, like shampoo and conditioner, lotions, TOOTHPASTE, mouthwash, hair products, etc.? My son was having occasional symptoms and I realized that it was his toothpaste. (Stay away from Oral-B/Zooth!)

I hope you feel better.

zkat Apprentice

It does get easier, but only after it gets harder. I was one who thought I would never mourn gluten foods, because they always made me so sick. But-there is something about telling me I can't that makes me want! ;) I mourned Pizza, spagetti, sandwhiches, you name it. Now I have found my gluten free substitutes and I am happy.

I love the Gluten Free Bible. It is very informative and she has a great sense of humor! She was diagnosed in the early 80's when no one ever heard of Celiac (less than now anyway)

Welcome to the board!

Kat.

GFhopeful Rookie

i was still getting sick for a couple weeks after going gluten-free and then went way back to basics for foods and have beenfeeling much better - if i can wash it and peel it myself, then i can eat it. i figure i have a lifetime to add in more foods but for now it's chicken, rice, potatoes, veggies, and fruits. and it hasn't been that bad at all. i'm surprised how little i crave when i eat healthy like this. and i've totally maintained my weight for the past month (had lost 20 lobs in less than 2 months but now it's stabilized). oh yeah, avocados and olive oil are a couple of high-calorie healthy choices.

is there any way you can talk your family into having a gluten-free kitchen at home? that made me feel alot better, having just products that are gluten free, even though i don't even eat them yet i know that they are not getting into my food, i.e. Lay's Stax are supposedly gluten-free, don't know if i react to them but my husband can have his snack and i'm not paranoid. i found lots of snacks for my kids that are gluten-free too and it makes me feel a little less like the whole world is assaulting me. i figure they can go out places and get all the gluten they want but i would like a place to feel safe at home. and we've all never eaten more meals together as a family so it's been a positive. just a thought. good luck and hope you feel better soon.

noglutee4kt Newbie

Don't worry! It will get easier I Promise! when I was diagnosed (Oct.06) I was completely overwhelmed. In fact I sat at my kitchen table every night for the first 2 weeks and cried. I had about 10 gluten free books and felt so confused. It hasn't been a full year yet and I am starting to get the hang of it. Definitely get the gluten free for dummies book and Dr. Green's book, they are both so informative. Just take it day by day, or meal by meal. My bf (is awesome) and helps me every day to remember that this diet will help me live a longer and healthier life. I know it's hard to find the positive in it some days, but it will get easier. Also- have you met with a nutritionist? I found it very helpful. Good luck!!!! :)

Adelle Enthusiast

Yes it gets easier. But it takes adjustment!! I didn't buy ALL new pans, I replaced anything scratched or really old. And I replaced my utensils. And almost all of my cooking "gear".

I also made my house entirely gluten-free. I knew if I didn't I'd cheat. Knowing what I know now about CC, I'm sure I'd have never healed. Plus, you deserve the right to feel safe and unpoisoned in your own home. I told my husband that he could have a gluten PARTY outside the house, but since I buy, prepare, and cook the food, I'm not buying or handling gluten. In a couple of weeks, HE noticed all of his "mysterious" health issues dissapeared off gluten too!! Turns out we BOTH have it!!

But even if one of us could "magically" eat it again, we would NOT. No regrets.

I KNOW it sucks buying new kitchen stuff (at the time we were WAY under the poverty line and in debt. DH worked overtime and we borrowed $ to replace stuff) and I KNOW it feels bad asking people not to eat poison in your home. But they'll live. Just picture in your brain gluten is arsenic. If an arsenic covered fork touched your food, would you eat it anyway? I've been gluten-free for 11 months and that has REALLY helped me. I have no cravings for gluten anymore.

Now, it's second nature. Easy as (well, not pie, I never liked pie......) Spinach salad (my favorite!).

Nixing gluten in the house might make ur fam grumpy at first. Sure they'll complain. But guess what having a healthy (and alive) mom/wife is the MOST important thing. They'll get over it!!


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cookie22 Newbie

i suggest keeping gluteny snacks for the rest of the family (it's not realistic to make them all gluten-free, it's really not, your famiy cares about you, but they are not sick, you are and it won't hurt you if they eat a kitkat), and cook all meals gluten-free.

sfm Apprentice
I am completely lost in all of this. I don't know what I should be doing. I am spending hours on end in my "office" (the rest room) I have been trying to be gluten free for about one month now but don't seem to be getting better. I have lost 20lbs in the past two months. I am tired all the time. I drop things all the time. I can't remember the names of simple things when I look at them. Words come out wrong ... How long will it take for me to get better?

Do I have to really throw out all my kitchen utensils, pots & pans, bread machine, plastic cups and plates? How strict do I have to be? I am really sensitive. I also have allergies to soy, eggs, dairy (all forms).

My husband and son have no allergies. Will their consumption of gluten products bother me? If I make something with gluten for them do I have use a different pot etc ...

OK, I guess you all can tell I am not handling this all very well. With all the other medical problems I have I just am overwhelmed that now I have to deal with this. :unsure:

Is there a book that out there that can help me with out overwhelming me? All this internet researching is getting me very depressed. :blink:

Thanks for letting vent. :rolleyes:

F.deSales

I have been gluten free - mostly, except for contamination - since November 2006. It took me awhile to realize how important it was to keep everything from being near anything with gluten. I'm a single mom with two kids who are not gluten free - we now have separate toaster ovens (and I use "mine" to cook quite a bit), and the counter where my toaster oven sits is STRICTLY gluten free. My kids have gotten used to that - I prepare all of their food on the other end of the counter, where it is nowhere near "my" counter.

I use a lot of paper or plastic plates and cutlery to avoid the possibility of contamination (this is not for everyone, I know). I do keep separate pots and pans (in a different cabinet) and I have a separate spatula for frying. I will use metal spoons and other cooking utensils - but I am beyond thorough when it comes to washing them.

My children have grown use to and extremely supportive (they've seen how sick I get). My daughter will remind me to wash my hands, etc., after I've come in contact with gluten. It's less complicated than it seems at first - just a big old learning curve, and then it becomes easier.

The other thing to consider is other food intolerances. I am also casein (milk protein) intolerant, and have recently found that I have a sensitivity to corn, and tree nut allergies which also cause digestive problems. Until I eliminated other things, I wasn't feeling all better - a little better, but not enough.

Good luck - it does get easier with time!

Sheryll

kbtoyssni Contributor
that made me feel alot better, having just products that are gluten free, even though i don't even eat them yet i know that they are not getting into my food, i.e. Lay's Stax are supposedly gluten-free, don't know if i react to them but my husband can have his snack and i'm not paranoid.

Lays Stax are made on dedicated gluten-free equipment so you'd probably be ok.

F.deSales Rookie
You have to be very careful with cross contamination. Most people replace toasters, waffle irons, cutting boards, wooden spoons, pasta strainers, non-stick pots & pans, all cast iron, and anything that is scratched. Replace anything that you think would be difficult to clean thoroughly. I replaced everything...slowly. Everything that I had was old hand me downs anyway. It made me realize that you can cook with less, you just have to do dishes more often. :P I replaced everything because I didn't want to always worry if my son's tummy ache was because of the pan I used. If you are preparing gluten you should handle it like poison. You could wear plastic gloves so you don't have to worry about gluten getting under your fingernails. You should never put gluten or any glutened utensil directly on any surface and you should wash your hands constantly or change your gloves. I also wash my gluten free dishes first. Have you made sure that all of your higiene products are gluten free, like shampoo and conditioner, lotions, TOOTHPASTE, mouthwash, hair products, etc.? My son was having occasional symptoms and I realized that it was his toothpaste. (Stay away from Oral-B/Zooth!)

I hope you feel better.

Hi Jenny,

Wow. I had no clue that my life has to change so much. I guess this weekend I will have my Husband clean out the kitchen. I will wash the hands and wear gloves when I clean the kitchen or prepare gluten foods for my husband and son. It just blows away that I have to be so careful. It could be in my shampoos, lotions, HAIR PRODUCTS TOO? How do I find out about those products? I guess I could google my make up & stuff. WOW.

Has the rest of your family had to change their habits in order to help out your son's CS.? How is he handling all this?

It is going to be quite an adventure. My friends are not really understanding all this but they are very supportive. My husband is really stepping up and helping me find stuff. He does not even blink that we have to travel 1 1/2 hours each way to get to Whole Foods.

Thanks for responding. It is nice not to feel alone. I am still a bit sick but I know it will take time for my guts to heal.

I hope your son is doing well. :D

Angie

F.deSales Rookie
Hello,

First of all, it does get better and easier. It sounds like you aren't getting the right combination of foods and that you are getting glutenated from the surrounding gluten in your kitchen. You can't eat anything that has touched gluten and you should have separate pots and wooden spoons. Also, you need to make sure that you don't use the same toaster, clean up any crumbs, and wash your hands throughly after touching gluten. Also, you can't use the same bread machine because there is no way to adequately clean it.

What I would do is buy one separate pot and pan, for now, and use them to cook staple foods until you heal: rice, meat, fruits, and vegetables. Live off of those for a month or two and see how you feel. Don't put your pans in the same cabinet as anyone else and make sure you don't consume anything that could have gluten in it or that has touched it. If you are 100% gluten free for a month and don't see any improvement, talk to your doctor.

As far as books, Gluten Free for Dummies and Dr. Green's, Celiac: the hidden epidemic (or something like that), seem to be favorites.

Good Luck!

Thank you very much for responding! I am now realizing how careful I have to be. I did not know how easy it can be to be contaminated. I am very sensitive! I am trying to eat bland until I heal. I am one of those slow healers

This sounds like all this is going to put a bigger dent in our food budget. We have to already shop at Whole Foods because I need to eat organic (other medical problems & and allergies) I have just spent ton of money and only got a few things. Its hard to know what staples you need at the beginning.

Gluten Free for Dummies?! :lol: I will go and it and Dr. Green's, Boaders perhaps.

Thank you again for your advice and your support. Right now it seems like an impossible life to lead.

Angie

F.deSales Rookie
Hello,

First of all, it does get better and easier. It sounds like you aren't getting the right combination of foods and that you are getting glutenated from the surrounding gluten in your kitchen. You can't eat anything that has touched gluten and you should have separate pots and wooden spoons. Also, you need to make sure that you don't use the same toaster, clean up any crumbs, and wash your hands throughly after touching gluten. Also, you can't use the same bread machine because there is no way to adequately clean it.

What I would do is buy one separate pot and pan, for now, and use them to cook staple foods until you heal: rice, meat, fruits, and vegetables. Live off of those for a month or two and see how you feel. Don't put your pans in the same cabinet as anyone else and make sure you don't consume anything that could have gluten in it or that has touched it. If you are 100% gluten free for a month and don't see any improvement, talk to your doctor.

As far as books, Gluten Free for Dummies and Dr. Green's, Celiac: the hidden epidemic (or something like that), seem to be favorites.

Good Luck!

Thank you very much for responding! I am now realizing how careful I have to be. I did not know how easy it can be to be contaminated. I am very sensitive! I am trying to eat bland until I heal. I am one of those slow healers

This sounds like all this is going to put a bigger dent in our food budget. We have to already shop at Whole Foods because I need to eat organic (other medical problems & and allergies) I have just spent ton of money and only got a few things. Its hard to know what staples you need at the beginning.

Gluten Free for Dummies?! :lol: I will go and it and Dr. Green's, Borders perhaps.

Thank you again for your advice and your support. Right now it seems like an impossible life to lead.

Angie

F.deSales Rookie
It does get easier, but only after it gets harder. I was one who thought I would never mourn gluten foods, because they always made me so sick. But-there is something about telling me I can't that makes me want! ;) I mourned Pizza, spagetti, sandwhiches, you name it. Now I have found my gluten free substitutes and I am happy.

I love the Gluten Free Bible. It is very informative and she has a great sense of humor! She was diagnosed in the early 80's when no one ever heard of Celiac (less than now anyway)

Welcome to the board!

Kat.

Hi Kat.

Thank you for your welcome and advice! I am already soy, egg and dairy free ... for years now. I use to cheat on those items but I get the impression that I can't at all with gluten.

Where is the best place to find substitutes? I tried corn pasta and YUCK! I am Italian and pasta is like part of life. I had to give up cheese ... now no real pasta! I will try to remember that it will get better. Now it seems like there in no joy in food land.

Thanks again. I know I will be bugging you all with more later! :unsure:

Angie

F.deSales Rookie
i was still getting sick for a couple weeks after going gluten-free and then went way back to basics for foods and have beenfeeling much better - if i can wash it and peel it myself, then i can eat it. i figure i have a lifetime to add in more foods but for now it's chicken, rice, potatoes, veggies, and fruits. and it hasn't been that bad at all. i'm surprised how little i crave when i eat healthy like this. and i've totally maintained my weight for the past month (had lost 20 lobs in less than 2 months but now it's stabilized). oh yeah, avocados and olive oil are a couple of high-calorie healthy choices.

is there any way you can talk your family into having a gluten-free kitchen at home? that made me feel alot better, having just products that are gluten free, even though i don't even eat them yet i know that they are not getting into my food, i.e. Lay's Stax are supposedly gluten-free, don't know if i react to them but my husband can have his snack and i'm not paranoid. i found lots of snacks for my kids that are gluten-free too and it makes me feel a little less like the whole world is assaulting me. i figure they can go out places and get all the gluten they want but i would like a place to feel safe at home. and we've all never eaten more meals together as a family so it's been a positive. just a thought. good luck and hope you feel better soon.

Thank you for sharing what you have gone through. I guess I need to go back to the pure basics. I am already eating some organic I guess I will have to do more. I will try to get my family to work with me on keeping the kitchen gluten-free. Where can I find kid snacks. If I can find some good ones I know that they won't mind. Right now I feel as the whole world does not get what this does to us.

How do you handle going out to eat. I am depressed that I might have to give up my nights out with the girls. Last time we had one I go sick. Thought I ordered well, LongHorn plain steak and a plain sweet potato ...

Thanks again for taking the time to respond.

Angie

GFhopeful Rookie

I haven't eaten outside of the house yet, too scared! I've been gluten-free for 2 months but if iI were to go out to a restaurant, I would probably eat at home first and then order a drink and just socialize. Tha'ts what I've done at family parties and friends' houses where there is fodd that I can't have - or brought my own that is safe that everyone can share. It's lame, I know, but I just want to get healthy. I'll gain confidence but I just can't stand another week in bed if I get gluten in my system. As far as kids snacks, I have really young kids so it's easier for me as they don't know any different (3 year old and 15 month old) so their snacks are fruits, fruit snacks, raisins, string cheese, carrot sticks etc. It would be harder if you have older kids, I'll have to say. Read messages on this board as they have lots of regular type food suggestions for snacks for older kids. But I was thinking that there really isn't anything I can't have, I just have to make it myself. I have tried some gluten-free brownie mixes at home and they are really good, honestly - no joke. Hope today you feel better than yesterday and so on.

Adelle Enthusiast

I am really anti eating out, but if you really want to you could call the restraunt ahead of time and see if they have any bottled/canned drinks. That way there isn't any CC risk at all.

If they just plop the steak on the same grill they use for pancakes, salisbury steak, or the like THAT'S why u got sick. You could also call the manager and see if they'll put foil down, train the staff on gluten-free stuff etc. There's one restraunt here that's not a gluten-free type of place, but they'll use separate bowls/utensils, cook separate stuff. I never got sick there. Worth a try.

If u have non gluten-free snacks (that are grab and go, no prep needed) that probably won't make u sick.

Stick with it!! It gets soooo much easier!

gfpaperdoll Rookie

You might want to take a B12 everyday

You will need to learn to bake gluten free, you do not need to be doing anything with wheat flour as the stuff poofs up & gets on everything. I have a gluten-free house & bake for my office - they love everything!! Banana bread is easy to convert & I have a carrot cake recipe posted here & lemon bars turn out nice & cookies are easy. Your family will like it & it is cheaper than buying premade whether regular or gluten free. I cannot eat this stuff however, since I also share your allergy problems.

For starting out just take your food to restaurants. Most all restaurants put a "grill Base" on the meat which contains gluten - they usually do not remember to tell you this...

I would only cook gluten free, a couple of my friends started out with a mixed kitchen & then have since switched to all gluten free & their husbands ended up healthier!!!!

For Pasta there are several that people like - I do not eat it, I just use rice. But deBoles Lasagne noodles are nice, I used to make that for the whole family when I could have cheese :)

For the first 6 months, I think it is best not to eat the gluten free breads & pastas etc, better to stick to your whole foods, you will feel loads better, also I hope that your food allergies get better like mine did. Not knowing about celiac I battled them for 50 years... & they only get worse as you get older, but now mine are better now that I am gluten-free & DF.

F.deSales Rookie
I haven't eaten outside of the house yet, too scared! I've been gluten-free for 2 months but if iI were to go out to a restaurant, I would probably eat at home first and then order a drink and just socialize. Tha'ts what I've done at family parties and friends' houses where there is fodd that I can't have - or brought my own that is safe that everyone can share. It's lame, I know, but I just want to get healthy. I'll gain confidence but I just can't stand another week in bed if I get gluten in my system. As far as kids snacks, I have really young kids so it's easier for me as they don't know any different (3 year old and 15 month old) so their snacks are fruits, fruit snacks, raisins, string cheese, carrot sticks etc. It would be harder if you have older kids, I'll have to say. Read messages on this board as they have lots of regular type food suggestions for snacks for older kids. But I was thinking that there really isn't anything I can't have, I just have to make it myself. I have tried some gluten-free brownie mixes at home and they are really good, honestly - no joke. Hope today you feel better than yesterday and so on.

I had to laugh at your comment about the good brownies ... I need to find something that does not make me gag! I have tried cookies, "chocolate mousse", cereal and raisin buns ... gag! The worst was corn pasta! I will have to check what older kids eat, I have a 15yrld son. He does not eat to many sweets but he loves pizza, pancakes and Ritz crackers ... which make a gluten mess! :blink:

I have not gone out much since all this. I still feel like a cheese grater is partying in my insides. I doubt I will set foot in a restaurant for a long time!

I hope that when we both are feeling better we will have the courage to eat but eat healthy! I hope you are feeling well today and tomorrow!

Thank you for taking the time to reply to this scared Glutenite! :huh: :huh:

F.deSales Rookie
Don't worry! It will get easier I Promise! when I was diagnosed (Oct.06) I was completely overwhelmed. In fact I sat at my kitchen table every night for the first 2 weeks and cried. I had about 10 gluten free books and felt so confused. It hasn't been a full year yet and I am starting to get the hang of it. Definitely get the gluten free for dummies book and Dr. Green's book, they are both so informative. Just take it day by day, or meal by meal. My bf (is awesome) and helps me every day to remember that this diet will help me live a longer and healthier life. I know it's hard to find the positive in it some days, but it will get easier. Also- have you met with a nutritionist? I found it very helpful. Good luck!!!! :)

A million thanks for your pep talk! I have spent many nights crying in my hubby's arms while he ate Oreo's ;o)

Your bf sounds like a keeper! This is tough on our loved ones too. I know that it will take time but sometimes when you think I will never be able to eat ... ya get down. I have to remember that if I don't I will not live long. I am being to sent to a medical collage UVA and they will help me with the proper nutritionist.

Thanks again.

F.deSales Rookie
Yes it gets easier. But it takes adjustment!! I didn't buy ALL new pans, I replaced anything scratched or really old. And I replaced my utensils. And almost all of my cooking "gear".

I also made my house entirely gluten-free. I knew if I didn't I'd cheat. Knowing what I know now about CC, I'm sure I'd have never healed. Plus, you deserve the right to feel safe and unpoisoned in your own home. I told my husband that he could have a gluten PARTY outside the house, but since I buy, prepare, and cook the food, I'm not buying or handling gluten. In a couple of weeks, HE noticed all of his "mysterious" health issues dissapeared off gluten too!! Turns out we BOTH have it!!

But even if one of us could "magically" eat it again, we would NOT. No regrets.

I KNOW it sucks buying new kitchen stuff (at the time we were WAY under the poverty line and in debt. DH worked overtime and we borrowed $ to replace stuff) and I KNOW it feels bad asking people not to eat poison in your home. But they'll live. Just picture in your brain gluten is arsenic. If an arsenic covered fork touched your food, would you eat it anyway? I've been gluten-free for 11 months and that has REALLY helped me. I have no cravings for gluten anymore.

Now, it's second nature. Easy as (well, not pie, I never liked pie......) Spinach salad (my favorite!).

Nixing gluten in the house might make ur fam grumpy at first. Sure they'll complain. But guess what having a healthy (and alive) mom/wife is the MOST important thing. They'll get over it!!

I freaked out and bought all new stuff. I even gave away my beloved bread machine. We charged everything too. We will selling more stuff on ebay to pay for this extra pure life style.

The family is agreeing to help me out. Hubby works at home, his office is in the basement and that is where we will be moving the gluten poison. Then we are going to get an island for the kitchen to put the toaster on becsue of the toxic mess it makes on my counter-top. I think CC is the reason that I am having troubles healing. I have lost so much weight and the doc is getting worried.

A BIG thank you for your support and advice! I would be a mess if I did not have this support!

F.deSales Rookie
i suggest keeping gluteny snacks for the rest of the family (it's not realistic to make them all gluten-free, it's really not, your famiy cares about you, but they are not sick, you are and it won't hurt you if they eat a kitkat), and cook all meals gluten-free.

Thanks for your advice! I plan on making the nice guy friendly finished basement the gluten zone for my hubby and son. All meals I cook will be gluten free. I can't see making them live with out Oreos!

F.deSales Rookie
I have been gluten free - mostly, except for contamination - since November 2006. It took me awhile to realize how important it was to keep everything from being near anything with gluten. I'm a single mom with two kids who are not gluten free - we now have separate toaster ovens (and I use "mine" to cook quite a bit), and the counter where my toaster oven sits is STRICTLY gluten free. My kids have gotten used to that - I prepare all of their food on the other end of the counter, where it is nowhere near "my" counter.

I use a lot of paper or plastic plates and cutlery to avoid the possibility of contamination (this is not for everyone, I know). I do keep separate pots and pans (in a different cabinet) and I have a separate spatula for frying. I will use metal spoons and other cooking utensils - but I am beyond thorough when it comes to washing them.

My children have grown use to and extremely supportive (they've seen how sick I get). My daughter will remind me to wash my hands, etc., after I've come in contact with gluten. It's less complicated than it seems at first - just a big old learning curve, and then it becomes easier.

The other thing to consider is other food intolerances. I am also casein (milk protein) intolerant, and have recently found that I have a sensitivity to corn, and tree nut allergies which also cause digestive problems. Until I eliminated other things, I wasn't feeling all better - a little better, but not enough.

Good luck - it does get easier with time!

Sheryll

Thanks Sheryll. I did not even think of using paper or plastic plates! I am very sensitive and doing that with gluten laden stuff is a great idea.

I have a ton ot other food intolerances. I go soon to be retested since I have gotten so bad. They want to make sure that I have not developed any new ones.

Thanks for taking the time to write!

F.deSales Rookie
I am really anti eating out, but if you really want to you could call the restraunt ahead of time and see if they have any bottled/canned drinks. That way there isn't any CC risk at all.

If they just plop the steak on the same grill they use for pancakes, salisbury steak, or the like THAT'S why u got sick. You could also call the manager and see if they'll put foil down, train the staff on gluten-free stuff etc. There's one restraunt here that's not a gluten-free type of place, but they'll use separate bowls/utensils, cook separate stuff. I never got sick there. Worth a try.

If u have non gluten-free snacks (that are grab and go, no prep needed) that probably won't make u sick.

Stick with it!! It gets soooo much easier!

OK, plug your ears ... I MISS EATING OUT! I MISS SAYING TO MY FAMILY HEY I DON'T FEEL LIKE COOKING LETS EAT OUT!!!!!!!

With all the luck I have had with eating out and my other allergies, I think my eating out days are over. :(

Thanks for posting and letting me feel sorry for myself!

Karen B. Explorer
I had to laugh at your comment about the good brownies ... I need to find something that does not make me gag! I have tried cookies, "chocolate mousse", cereal and raisin buns ... gag! The worst was corn pasta! I will have to check what older kids eat, I have a 15yrld son. He does not eat to many sweets but he loves pizza, pancakes and Ritz crackers ... which make a gluten mess! :blink:

I have not gone out much since all this. I still feel like a cheese grater is partying in my insides. I doubt I will set foot in a restaurant for a long time!

I hope that when we both are feeling better we will have the courage to eat but eat healthy! I hope you are feeling well today and tomorrow!

Thank you for taking the time to reply to this scared Glutenite! :huh: :huh:

One of the drop-dead yummiest cookies I've made since going gluten-free was with Namaste Spice Cake mix. My (non-Celiac) office gang ate way too many of them during the holidays. Just follow package directions EXCEPT don't add the water it calls for. It makes a crispy cookie but I add walnuts and ground flax seed to mine for extra crunch (and fiber). I've reached the point where I don't tell my co-workers when I have these in my lunch unless I bring enough to share. Otherwise, all morning long I get offers for "help" in exchange for a cookie. LOL, they don't know the cookies are actually healthy for you.

If corn pasta was the worst, have you tried Tinkyada?

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    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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