Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


F.deSales

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,294
    • Most Online (within 30 mins)
      7,748

    Dianr
    Newest Member
    Dianr
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
×
×
  • Create New...