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Officially Casien Intolerant

SunnyDyRain

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SunnyDyRain Enthusiast
SunnyDyRain
Posted

Today was the final test, I only had gluten-free food prepared by me, and lactaid milk in my coffee, still having digestive problems.

So now i need to take all dairy out....

Where is the hidden sources of dairy I need to look out for?

What is the best subtitues? I know Rice Dream Milk is out, and I've been told Soy is bad for thyroid. (mine is on the low side of normal)

I feel so isolated now, I really really don't think this is going to work. I live on milk, cheese and all that.

And one more question....

Why do they use milk in salt and vinegar chips? GRRR

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AndreaB Contributor
AndreaB
Posted

Ok, I've tried responding to this twice and I've gotten locked up. :angry:

I have posted some recipes from cookbooks I have/had. Please go to my user name and view profile. From there you can scroll through my topics. You're looking for gluten free dairy free soy free (except a couple) egg free.

Keep in mind that you may go through withdrawals but it will get easier.

Also this may be temporary for you (I noticed you are pretty newly diagnosed). You may want to do a challenge in 6 months to a year to see if it's a permanent intolerance or just until you've healed.

I also noticed on another thread that Rice Dream will be going gluten free in the near future so that's something to keep in mind. :)

confused Community Regular
confused
Posted

I had the worst time goign dairy free, i lived on cheese. But i am getting better now, and i hardly miss it. Milk is in odd places so read everything. I had got my kids bomb pops a couple of weeks ago and i wanted one so bad. Then i read in the back that they may contain milk proteins, so i didnt get to have one. I was drinking soy milk, but i know think i have problems with soy milk, so i am just not drinking milk at all. I did try cocounut milk and that was just gross.

paula

NoGluGirl Contributor
NoGluGirl
Posted
Today was the final test, I only had gluten-free food prepared by me, and lactaid milk in my coffee, still having digestive problems.

So now i need to take all dairy out....

Where is the hidden sources of dairy I need to look out for?

What is the best subtitues? I know Rice Dream Milk is out, and I've been told Soy is bad for thyroid. (mine is on the low side of normal)

I feel so isolated now, I really really don't think this is going to work. I live on milk, cheese and all that.

And one more question....

Why do they use milk in salt and vinegar chips? GRRR

Dear SunnyDyRain,

It makes you want to scream, doesn't it? The other day, I got sick from beans! I had eaten them for three days in a row, and was fine. The fourth day, I got sick! I even ate less than I normally did. Go figure! :blink:

There are many hidden dairy ingredients. Anything with caseinate or whey anything is a tip-off. Lactose is another thing to watch for. That is in chocolate candy. I tolerate it in extremely small amounts. I get really sick from yogurt or pudding, but can eat chocolate candy.

As far as substitutes go, soy milk will not necessarily hurt your Thyroid. The soy extracts like soy lecithin actually are bad for the Thyroid. When mine is slow, I reduce my intake of anything with soy lecithin particularly. There are other things the Thyroid needs to work properly. I have Thyroid disease, so I know what works well and what does not when it is slow.

Flouride is deadly to the Thyroid. Tap water is a no-no! Drink bottled water. Aquafina is great! Their flavored ones are delicious, too! Also, sugar and refined carbs slow it down. Transfats kill it. Peanuts, peaches and broccoli have a slowing effect on it. You would never suspect some of these things to bother it.

Some healthful additions if you can tolerate them that helped get my Thyroid working well again (now too well!) are Solaray Rosemary Leaf Extract (1 capsule a day) and Ashwaghanda (Indian Ginseng, 1 capsule a day with the Rosemary Leaf Extract). I also added Virgin Coconut Oil (2-3 Tablespoons daily). You can use it in baked goods, frying, etc. I could not take quite as much as you are supposed to due to having to limit my fat intake because of having my gallbladder out. Eating one serving of fish or beans a day also revs up your Thyroid. Walking for a half our daily six days a week helps, too. The last thing is make sure you use iodized salt (sea salt is best if you can get it) because most salt in prefab foods is not iodized. The Thyroid needs iodine to function. I hope this helps!

Sincerely,

NoGluGirl

SunnyDyRain Enthusiast
SunnyDyRain
Posted
  • Author
Flouride is deadly to the Thyroid. Tap water is a no-no! Drink bottled water. Aquafina is great! Their flavored ones are delicious, too! Also, sugar and refined carbs slow it down. Transfats kill it. Peanuts, peaches and broccoli have a slowing effect on it. You would never suspect some of these things to bother it.

Some healthful additions if you can tolerate them that helped get my Thyroid working well again (now too well!) are Solaray Rosemary Leaf Extract (1 capsule a day) and Ashwaghanda (Indian Ginseng, 1 capsule a day with the Rosemary Leaf Extract). I also added Virgin Coconut Oil (2-3 Tablespoons daily). You can use it in baked goods, frying, etc. I could not take quite as much as you are supposed to due to having to limit my fat intake because of having my gallbladder out. Eating one serving of fish or beans a day also revs up your Thyroid. Walking for a half our daily six days a week helps, too. The last thing is make sure you use iodized salt (sea salt is best if you can get it) because most salt in prefab foods is not iodized. The Thyroid needs iodine to function. I hope this helps!

Sincerely,

NoGluGirl

Wow! So much to take in. I drink about 64 oz of Tap Water a day! I will have to change that. Soy lecithin are in alot of candy isnt' it? Boo. Broccoli is my FAVE veggie! I also love peanuts, but peanut butter is my down fall.

I have been trying to eat more beans, I can now eat Re-fried beans(of course covered in cheese!), and gabonzo beans, and of course green beans... but kidney and all that i'm still wary. Me and fish is a fight, though I have been trying... I'm finding so many things to be careful about. Grr! I will look into those herbs, I'd rather take them then have to get some synthroid.

I am trying coffee-mate in my coffee today.... it's just not the same!

Lets just hope it's temporary! (though with my luck, it's forever!)

NoGluGirl Contributor
NoGluGirl
Posted
Wow! So much to take in. I drink about 64 oz of Tap Water a day! I will have to change that. Soy lecithin are in alot of candy isnt' it? Boo. Broccoli is my FAVE veggie! I also love peanuts, but peanut butter is my down fall.

I have been trying to eat more beans, I can now eat Re-fried beans(of course covered in cheese!), and gabonzo beans, and of course green beans... but kidney and all that i'm still wary. Me and fish is a fight, though I have been trying... I'm finding so many things to be careful about. Grr! I will look into those herbs, I'd rather take them then have to get some synthroid.

I am trying coffee-mate in my coffee today.... it's just not the same!

Lets just hope it's temporary! (though with my luck, it's forever!)

Dear SunnyDyRain,

Yeah, that tap water will do your thyroid in. :( Soy lecithin is in a lot of things besides candy. However, the Chocolate Emporium has some soy-free, casein-free, gluten-free chocolate chips.

Go to www.choclat.com to see what they have! You will be pleasantly surprised!

I love broccoli as well. I love Chinese. I could live off of it. I have a terrible peanut butter addiction. I try not to overeat it, but I love it so much! It is bad for the Candida I have, so I need to cut it out.

Beans have made me ill recently. I am unsure as to why. Fish is kind of difficult for a lot of people to eat. I like it, but mercury poisoning is a concern. Stick to small fish, because they have lower levels of mercury. It is annoying finding how all of these things needs to be considered. It would be nice to be able to go to McDonald's and get a Big Mac and Fries without having to give it a second though. The herbs are great. Withing two weeks, I was losing weight (the thyroid meds did not help with that) and felt better with more energy. It was amazing! The medication had side effects that were less than pleasant. I had heart palpitations, could not sleep and was jittery. The herbs did not have that with them at all.

Sincerely,

NoGluGirl

hathor Contributor
hathor
Posted

You might find a rice milk you can tolerate. I happen to like the flavor of almond milk better, myself.

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tarnalberry Community Regular
tarnalberry
Posted

I find dairy free harder than gluten free. There is no good cheese substitute, even with soy, and no good yogurt substitute w/o soy.

There are lots of milk alternatives: various rice milks (Rice Dream is far from the only one out there), almond milk (also a number of brands), potato based milk, and hemp milk, to name a few. There are even butters you can have - I use Earth Balance for things like popcorn, but olive or canola oil for everything else.

There's lots of Gluten-free Casein-free chocolate (though you'll have to acquire a taste for dark chocolate), and a few kinds of which are soy free as well. (Though I didn't think you need to worry about soy lecithin in those sorts of small quantities for mild thyroid issues. Of course, I'm not very knowledgeable about thyroid issues, so what do I know! :) )

My recipe thread ("As Promised, A Few Recipes") has a number of Gluten-free Casein-free recipes (most are free of other major allergens as well), and you'll probably find some useful things in raw foods cookbooks (like a ranch dressing made from raw cashews that has no dairy).

Hang in there!

KarenDianne Newbie
KarenDianne
Posted
I find dairy free harder than gluten free. There is no good cheese substitute, even with soy, and no good yogurt substitute w/o soy.

There are lots of milk alternatives: various rice milks (Rice Dream is far from the only one out there), almond milk (also a number of brands), potato based milk, and hemp milk, to name a few. There are even butters you can have - I use Earth Balance for things like popcorn, but olive or canola oil for everything else.

There's lots of Gluten-free Casein-free chocolate (though you'll have to acquire a taste for dark chocolate), and a few kinds of which are soy free as well. (Though I didn't think you need to worry about soy lecithin in those sorts of small quantities for mild thyroid issues. Of course, I'm not very knowledgeable about thyroid issues, so what do I know! :) )

My recipe thread ("As Promised, A Few Recipes") has a number of Gluten-free Casein-free recipes (most are free of other major allergens as well), and you'll probably find some useful things in raw foods cookbooks (like a ranch dressing made from raw cashews that has no dairy).

Hang in there!

Yikes! More questions after reading (for an hour!) all this stuff...! What's this about not drinking tap water?? Also about not eating butter?? and what about someone talking about eating chocolate?? Where do I find chocolate I can eat that's gluten-free?? and what about the talk about yogurt? I think I read there are kinds of yogurt that I can eat that don't have dairy (I'm also lactose intolerant, for the most part)?? I also have thyroid disease... Thanks so much for addressing my questions - anyone...please...and THANK YOU! KarenDianne

tarnalberry Community Regular
tarnalberry
Posted
Yikes! More questions after reading (for an hour!) all this stuff...! What's this about not drinking tap water?? Also about not eating butter?? and what about someone talking about eating chocolate?? Where do I find chocolate I can eat that's gluten-free?? and what about the talk about yogurt? I think I read there are kinds of yogurt that I can eat that don't have dairy (I'm also lactose intolerant, for the most part)?? I also have thyroid disease... Thanks so much for addressing my questions - anyone...please...and THANK YOU! KarenDianne

The tap water is because of concern over fluoride affecting the thyroid issues she already has.

Butter is derived from milk, and has casein, and hence is off the list if you are casein intolerant.

The majority of chocolate (even many dark chocolates) have a milk product (be it whey, milk powder, milk fat, or something else) in them, and hence are out if you are casein free. Gluten isn't the main issue, though there are a hand-full of pure chocolates that have gluten (such as the wheat syrup in Green&Blacks mint flavor).

Yogurt - cows milk based yogurt - is dairy based, so it has casein, and can't be had if you're casein intolerant. While yogurt is low in lactose (the milk sugar), that is entirely independent of its casein (the milk protein) content. There are some soy based yogurts available, but the original poster noted that she was avoiding large quantities of soy.

I hope that helps on the first issues. There's more about foods to avoid - like cruciferous vegetables, if I recall correctly, if you have thyroid issues.

SunnyDyRain Enthusiast
SunnyDyRain
Posted
  • Author
I find dairy free harder than gluten free. There is no good cheese substitute, even with soy, and no good yogurt substitute w/o soy.

There are lots of milk alternatives: various rice milks (Rice Dream is far from the only one out there), almond milk (also a number of brands), potato based milk, and hemp milk, to name a few. There are even butters you can have - I use Earth Balance for things like popcorn, but olive or canola oil for everything else.

There's lots of Gluten-free Casein-free chocolate (though you'll have to acquire a taste for dark chocolate), and a few kinds of which are soy free as well. (Though I didn't think you need to worry about soy lecithin in those sorts of small quantities for mild thyroid issues. Of course, I'm not very knowledgeable about thyroid issues, so what do I know! :) )

My recipe thread ("As Promised, A Few Recipes") has a number of Gluten-free Casein-free recipes (most are free of other major allergens as well), and you'll probably find some useful things in raw foods cookbooks (like a ranch dressing made from raw cashews that has no dairy).

Hang in there!

2 days off casien completely (thursday I screwed up hidden dairy.. whoops!) and I feel great. 2 days with Solid BM (sorry if TMI, i'm just excited!)

I went to a carshow today and didn't even break down as I checked out every food vendor to just find nothing on that fairgrounds I could eat! Boo on them!

Tonight I got some rice milk, it's the store brand, labeled as gluten free and lactose free, but also vegan... so I'm assuming that means casien also. i wish they used Dairy free instead of lactose free! I'm still slightly worried.

I also got soy delcious icecream in chocolate and peanutbutter flavor, they said it is dairy free with no milk warning.. so I hope the chocolate doens't screw it up! I just had some... yummy! I am wary of the careegean that some say can cause an upset stomach it's self. So far...so good. EDIT: NOPE! Not tolerated by me :( Boo... I wanted Ice Cream!

I got mi-del's chocolate chip cookies, they said dairy free, and k-toos that looks like they don't contain a thing!

I feel better now... I will try my k-toos's dunked in rice milk tomorrow for breakfast and see how things feel!

Now if i could just find the money to buy water instead of tap!

I can do this! Thanks for all your help!

NoGluGirl Contributor
NoGluGirl
Posted
2 days off casien completely (thursday I screwed up hidden dairy.. whoops!) and I feel great. 2 days with Solid BM (sorry if TMI, i'm just excited!)

I went to a carshow today and didn't even break down as I checked out every food vendor to just find nothing on that fairgrounds I could eat! Boo on them!

Tonight I got some rice milk, it's the store brand, labeled as gluten free and lactose free, but also vegan... so I'm assuming that means casien also. i wish they used Dairy free instead of lactose free! I'm still slightly worried.

I also got soy delcious icecream in chocolate and peanutbutter flavor, they said it is dairy free with no milk warning.. so I hope the chocolate doens't screw it up! I just had some... yummy! I am wary of the careegean that some say can cause an upset stomach it's self. So far...so good. EDIT: NOPE! Not tolerated by me :( Boo... I wanted Ice Cream!

I got mi-del's chocolate chip cookies, they said dairy free, and k-toos that looks like they don't contain a thing!

I feel better now... I will try my k-toos's dunked in rice milk tomorrow for breakfast and see how things feel!

Now if i could just find the money to buy water instead of tap!

I can do this! Thanks for all your help!

Dear SunnyDyRain,

My brother got a PUR water filter that is attached to your sink. He really likes it. I am not sure about filters though. You have to watch some of them, because they have charcoal, which can contain gluten. The bottled water that is probably the least expensive is Aquafina. I like the Berry Splash flavor a lot!

Sincerely,

NoGluGirl

P.S. Go to www.choclat.com for some delicious gluten-free, dairy-free, soy-free goodies!

eLaurie Rookie
eLaurie
Posted
...Tonight I got some rice milk, it's the store brand, labeled as gluten free and lactose free, but also vegan... so I'm assuming that means casien also. i wish they used Dairy free instead of lactose free! I'm still slightly worried.

I also got soy delcious icecream in chocolate and peanutbutter flavor, they said it is dairy free with no milk warning.. so I hope the chocolate doens't screw it up! I just had some... yummy! I am wary of the careegean that some say can cause an upset stomach it's self. So far...so good. EDIT: NOPE! Not tolerated by me :( Boo... I wanted Ice Cream!

I got mi-del's chocolate chip cookies, they said dairy free, and k-toos that looks like they don't contain a thing!

I feel better now... I will try my k-toos's dunked in rice milk tomorrow for breakfast and see how things feel!

Now if i could just find the money to buy water instead of tap!

I can do this! Thanks for all your help!

Good to see you're doing well! Casein free was much harder for me than gluten, although I'm adapting (5 months now). And yes, it's aggravating that casein isn't better labeled. You're safe with vegan, though.

Coconut milk has been a lifesaver for me in recipes because I like creamy. It makes wonderful bread pudding. Just substitute gluten free bread and use coconut milk for the regular milk. I'm excited about experimenting with some cool coconut milk treats this summer. My mom used to substitute melted ice cream for the cold water when making jello and it was yummy. I'm going to try that with coconut milk and lime jello ...maybe mix in some coconut flakes, canned crushed pineapple, walnuts.

My brother got a PUR water filter that is attached to your sink. He really likes it. I am not sure about filters though. You have to watch some of them, because they have charcoal, which can contain gluten.

If anyone knows for certain about this, please correct me. I think cooking charcoal (which is sometimes bound together into the brickette shapes by gluten grain products) is the only charcoal to worry about. I don't think the charcoal used in filters (activated charcoal, I think?) is a problem. I hope not, because I use one of the fridge pitcher filters!

My recipe thread ("As Promised, A Few Recipes") has a number of Gluten-free Casein-free recipes (most are free of other major allergens as well), and you'll probably find some useful things in raw foods cookbooks (like a ranch dressing made from raw cashews that has no dairy).

Please link!!! Sounds like a wonderful recipe thread. :)

AndreaB Contributor
AndreaB
Posted
If anyone knows for certain about this, please correct me. I think cooking charcoal (which is sometimes bound together into the brickette shapes by gluten grain products) is the only charcoal to worry about. I don't think the charcoal used in filters (activated charcoal, I think?) is a problem. I hope not, because I use one of the fridge pitcher filters!

As far as I know you are correct. Brickette's have gluten but the filters for water are coconut.

tarnalberry Community Regular
tarnalberry
Posted
If anyone knows for certain about this, please correct me. I think cooking charcoal (which is sometimes bound together into the brickette shapes by gluten grain products) is the only charcoal to worry about. I don't think the charcoal used in filters (activated charcoal, I think?) is a problem. I hope not, because I use one of the fridge pitcher filters!

Please link!!! Sounds like a wonderful recipe thread. :)

yep, that first one is true.

as for the link, you can always get to it through the search, but here it isOpen Original Shared Link

NoGluGirl Contributor
NoGluGirl
Posted
Good to see you're doing well! Casein free was much harder for me than gluten, although I'm adapting (5 months now). And yes, it's aggravating that casein isn't better labeled. You're safe with vegan, though.

Coconut milk has been a lifesaver for me in recipes because I like creamy. It makes wonderful bread pudding. Just substitute gluten free bread and use coconut milk for the regular milk. I'm excited about experimenting with some cool coconut milk treats this summer. My mom used to substitute melted ice cream for the cold water when making jello and it was yummy. I'm going to try that with coconut milk and lime jello ...maybe mix in some coconut flakes, canned crushed pineapple, walnuts.

If anyone knows for certain about this, please correct me. I think cooking charcoal (which is sometimes bound together into the brickette shapes by gluten grain products) is the only charcoal to worry about. I don't think the charcoal used in filters (activated charcoal, I think?) is a problem. I hope not, because I use one of the fridge pitcher filters!

Please link!!! Sounds like a wonderful recipe thread. :)

Dear eLaurie,

I heard water filters were a concern as well. I did not even know they used charcoal! That was a huge surprise for me. If they are safe, it would be great if some others could confirm. Right now, I am drinking bottled flavored waters.

Sincerely,

NoGluGirl

NoGluGirl Contributor
NoGluGirl
Posted
yep, that first one is true.

as for the link, you can always get to it through the search, but here it isOpen Original Shared Link

Dear Tiffany,

Can you recommend a filter? Do you have Brita or PUR filter? I was wondering, because our Culligan broke in our refrigerator. It would be nice to have water without the chlorine and chemicals in it for my coffee. I do not need any other unhealthy things in my system!

Sincerely,

NoGluGirl

NoGluGirl Contributor
NoGluGirl
Posted
As far as I know you are correct. Brickette's have gluten but the filters for water are coconut.

Dear Andrea,

I am glad you posted this. It seems I do not have to be paranoid now! :) I would like to get a Brita filter. That would really help. I miss our Culligan! It died! I do not need to drink tap water, because my body already seems to have too many toxins in it!

Sincerely,

NoGluGirl

AndreaB Contributor
AndreaB
Posted
Dear Andrea,

I am glad you posted this. It seems I do not have to be paranoid now! :) I would like to get a Brita filter. That would really help. I

We were using Brita before we purchased a unit that would take care of fluoride as well.

SunnyDyRain Enthusiast
SunnyDyRain
Posted
  • Author

Yeah casien is annoying... I was using Coffee mate it was labeled as "dairy free" and "lactose-fee"! So today as I was sitting at work I was reading it just becasue I was bored, it has Sodium Casienate in it! Grr.. I know I haven't been reacting to it, I only use 1 tsp once a day, but it's annyoing because it said DAIRY free!

I know I don't like the rice milk... I don't usally like coconut, so i'm hesitant to try that. I really should just try soy... i'm just fighting it for some unknown reason... maybe because I assoicate soy with soy sauce and mike and soy sauce don't mix?

Who knows, but on the plus side, i'm feeling great!

NoGluGirl Contributor
NoGluGirl
Posted
Yeah casien is annoying... I was using Coffee mate it was labeled as "dairy free" and "lactose-fee"! So today as I was sitting at work I was reading it just becasue I was bored, it has Sodium Casienate in it! Grr.. I know I haven't been reacting to it, I only use 1 tsp once a day, but it's annyoing because it said DAIRY free!

I know I don't like the rice milk... I don't usally like coconut, so i'm hesitant to try that. I really should just try soy... i'm just fighting it for some unknown reason... maybe because I assoicate soy with soy sauce and mike and soy sauce don't mix?

Who knows, but on the plus side, i'm feeling great!

Dear SunnyDyRain,

I did not realize that about Coffee Mate! :o I have not used it since going gluten-free anyway. I handle extremely small amounds of lactose, but I do not want to overdo it. It is better to err on the side of caution than put yourself through the misery. I mostly drink my coffee with just a little sweetener in it, anyway, and that is all! This is so frustrating dealing with some of these things. It is so annoying that they sneak things into every food! I got some soy cheese at the health food store that had casein in it! :angry: I unfortunately did not realize it until I got it home.

Sincerely,

NoGluGirl

StrongerToday Enthusiast
StrongerToday
Posted
Yeah casien is annoying... I was using Coffee mate it was labeled as "dairy free" and "lactose-fee"! So today as I was sitting at work I was reading it just becasue I was bored, it has Sodium Casienate in it! Grr.. I know I haven't been reacting to it, I only use 1 tsp once a day, but it's annyoing because it said DAIRY free!

Some things say "non-dairy" but actually have casein in them - non-dairy creamers and Cool Whip too! Just another reason to keep reading those labels. Also, check your medications - a lot of them have lactose too.

Glad you're feeling better!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
We were using Brita before we purchased a unit that would take care of fluoride as well.

What unit takes care of fluoride as well?

I've been using a Pur, which I liked better than the Brita I used to use, but I don't think it takes care of fluoride.

NoGluGirl Contributor
NoGluGirl
Posted
Some things say "non-dairy" but actually have casein in them - non-dairy creamers and Cool Whip too! Just another reason to keep reading those labels. Also, check your medications - a lot of them have lactose too.

Glad you're feeling better!

Dear StrongerToday,

It is odd that I can tolerate some dairy and not others. I can apparently handle a small amount of lactose. I can have a dab of Cool Whip, a slice of cheese, or a milk chocolate bar. I cannot eat yogurt or pudding, though. It is so strange.

Sincerely,

NoGluGirl

AndreaB Contributor
AndreaB
Posted
What unit takes care of fluoride as well?

I've been using a Pur, which I liked better than the Brita I used to use, but I don't think it takes care of fluoride.

It's called the kitchen defender. The system he sells is based on what you need. He would need you to read the water "ingredients" (from the water company) and would recommend the system you would need. We have a 3 stage defender. He also sells whole house systems.

Go to the following website to check it out. I've been very pleased with this and the customer service of the owner (James McMahon).

Open Original Shared Link

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      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
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