Jump to content

  • 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

Officially Casien Intolerant

SunnyDyRain

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,134
    • Most Online (within 30 mins)
      7,748
    Driver
    Newest Member
    Driver
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.