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When Does The Craziness End?

Lexi

By Lexi
in Coping with Celiac Disease

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Lexi Enthusiast
Lexi
Posted

So, I have had this crazy Celiac Disease for about 4 years now. I have been through SO MANY ups and downs. I get better - I get worse - I get better - I get worse! I also can't tolerate dairy or soy, and I am always looking for new options for milk and my very FAVORITE food in the whole world - ICE CREAM. Rice Dream makes me TOTALLY SICK. I can't do soy milk or soy ice-cream. My body freaks out, for some ODD reason, when I drink coconut milk. All I want is something to put on my cereal and a bowl of ice-cream!!!!!! I decided to try Hemp milk. I was so excited - I LOVED the taste, and I loved the Tempt Hemp Milk Ice Cream. I mean really LOVED it!! After using this product for a few months, my hair turned to straw and started falling out, and I looked totally malnourished AGAIN. WHY? I just can't figure it out. This product is Gluten, Dairy, and Soy Free!!! Now, I am using Good Karma rice milk, but I'm still feeling Sick A Lot. What the heck??? ANY IDEAS???

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Hamster101 Rookie
Hamster101
Posted

It's going to really suck, but maybe you are allergic to soya products too? I'm not so sure about the Rice Dream, because I have never had it so do not know what it is made up of, but the rest seems to fit with the issue of an intollerance to soya.

.-. I'm sorry.

mushroom Proficient
mushroom
Posted

Okay, I have no idea why you react to hemp milk, but lots of people react to Rice Dream because it is processed with barley at some point in its life. Have you tried any other brands of rice milk?

weluvgators Explorer
weluvgators
Posted

I dropped hemp milk after getting all positives for every gluten home test that I ran on it. It was when I first started testing, and I couldn't believe it! So I ran several tests on same and different boxes in disbelief. I later tried another brand of hemp milk with the same results - positive for gluten. One of the manufacturers did share that their hemp farmers also farm barley. I couldn't understand how it was possible, but my health improved after declaring a "no hemp milk" policy in our home.

It took me some time, but I was finally able to track down a bulk bag of hemp seeds that tested negative for gluten. It is a great food to be able to enjoy!

RiceGuy Collaborator
RiceGuy
Posted

Since you had been using the hemp milk for months, without a specific gluten-type reaction, I'm not so sure it has much to do with your hair and apparent malnutrition. Many of us find it necessary to take nutritional supplements in order to make decent progress. A search will locate numerous threads on the subject.

As for the coconut milk, and other non-dairy milk products, it wouldn't surprise me if it is another ingredient, such as cane sugar, or maybe even xanthan. As was stated, Rice Dream milk does have gluten.

What happens when you eat ordinary unsweetened shredded coconut? If that is ok, you might try one of the coconut ice cream products on the market, such as Open Original Shared Link, or Open Original Shared Link, both of which are made with agave, not cane sugar. Coconut milk is also available unsweetened, and you can use Stevia, agave, or whatever sweetener suits you.

Ever try making your own nut or rice milk?

sa1937 Community Regular
sa1937
Posted

So, I have had this crazy Celiac Disease for about 4 years now. I have been through SO MANY ups and downs. I get better - I get worse - I get better - I get worse! I also can't tolerate dairy or soy, and I am always looking for new options for milk and my very FAVORITE food in the whole world - ICE CREAM. Rice Dream makes me TOTALLY SICK. I can't do soy milk or soy ice-cream. My body freaks out, for some ODD reason, when I drink coconut milk. All I want is something to put on my cereal and a bowl of ice-cream!!!!!! I decided to try Hemp milk. I was so excited - I LOVED the taste, and I loved the Tempt Hemp Milk Ice Cream. I mean really LOVED it!! After using this product for a few months, my hair turned to straw and started falling out, and I looked totally malnourished AGAIN. WHY? I just can't figure it out. This product is Gluten, Dairy, and Soy Free!!! Now, I am using Good Karma rice milk, but I'm still feeling Sick A Lot. What the heck??? ANY IDEAS???

Are you only lactose intolerant or do you react to both lactose and casein? If only lactose intolerant, Breyers makes lactose-free ice cream.

DaffodElle Newbie
DaffodElle
Posted

Lexi- I totally feel your pain!! I've been at this over 3 years and still the ups and downs.

The only thing I can suggest, and you might hate me for this, is to stop with the milk subs for a few days and see how it goes. I know for a fact that I do WORSE with milk subs than actual milk, at least with gluten-related sx. Cow's milk totally kills my stomach, but that's over in a few hours, vs. days with gluten.

I think a lot of the "milks" have CC issues if you really look into it. Even the GFCO products may be produced on the same lines as gluten-containing products sometimes. Just because something tests at less than 10 or 20 ppm doesn't mean that none of us will react to it.

I've only recently been doing better by cutting out ANYTHING processed. It sucks. But it also gives me hope!

On a brighter note, however, I did try a small amount of So Delicious coconut milk yesterday. I don't feel awesome, but I don't feel horrible... so maybe try that? Warning, though, it does contain carrageenan.

Good luck!

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mamaw Community Regular
mamaw
Posted

You are reacting to the other non-gluten ingredients. It is common to become sensitive to products other than gluten ones.I too love coconut products but I react to it.Nightshade vegetables also make some sick.

We like almond breeze for our cereal & none of us have reacted to it. For each person it is a trial & error to see what we react too beside the gluten....

hope you feel better soon.....

T.H. Community Regular
T.H.
Posted

Yeah, the Rice Dream uses barley during the processing, but since it's not an added ingredient they don't have to mention it. But I've heard many anecdotal accounts of reactions to it.

We had a lot of problems with pre-made non-dairy milks, too. They were gluten free, but not gluten free enough for us, sadly. The good news, though, is that it's actually really easy to make it yourself! There are recipes all over the web for homemade rice milk, soy milk, almond milk, etc... It sometimes takes a little time, but very little effort as long as you have a big pot and a blender.

There is even a machine that makes it even easier. It's called a soy milk maker - this one was recommended to me, although I haven't tried it myself:

Open Original Shared Link

However, it will make milk from beans, grains, and nuts. So you could make rice milk, soy milk, etc... Heck, a friend made quinoa milk on it to see if she could do it. :-)

You just add in a little oil and sweetener, and whatever else catches your fancy, and you're good to go. Often, the homemade stuff is more concentrated than the stuff at the store, so you can dilute it until you like the flavor.

We've done it with rice, almonds, and pistachios - just ourselves, not a machine - and it's worked great. We used the pistachio milk to make ice cream out of, too. It ended up kind of like pistachio sorbet - very interesting. But tasty.

Oh - you can make your own coconut milk, too, if you have shredded coconut. There are recipes for that on the web, too.

Hope that might help? :)

sandiz Apprentice
sandiz
Posted

So, I have had this crazy Celiac Disease for about 4 years now. I have been through SO MANY ups and downs. I get better - I get worse - I get better - I get worse! I also can't tolerate dairy or soy, and I am always looking for new options for milk and my very FAVORITE food in the whole world - ICE CREAM. Rice Dream makes me TOTALLY SICK. I can't do soy milk or soy ice-cream. My body freaks out, for some ODD reason, when I drink coconut milk. All I want is something to put on my cereal and a bowl of ice-cream!!!!!! I decided to try Hemp milk. I was so excited - I LOVED the taste, and I loved the Tempt Hemp Milk Ice Cream. I mean really LOVED it!! After using this product for a few months, my hair turned to straw and started falling out, and I looked totally malnourished AGAIN. WHY? I just can't figure it out. This product is Gluten, Dairy, and Soy Free!!! Now, I am using Good Karma rice milk, but I'm still feeling Sick A Lot. What the heck??? ANY IDEAS???

Chapman Ice cream has gluten free flavors and are very good.

kayo Explorer
kayo
Posted

Have you been tested for SIBO? how about fructose malabsorption?

Turns out that was the source of so many of my issues. I am lactose and soy free and used coconut milk for my milk sub. I began to react to it too. After being treated for SIBO and sticking to a low fructose/fructan diet I'm able to tolerate more foods that use to give me grief (though I had to give up some other foods like onion, garlic, various fruits, etc.) I now also use Hemp milk. I can have Coconut Bliss icecream in small amts. I can even tolerate lactose free cheese and yogurt. They used to give me terrible pain but now that pain is gone.

Lexi Enthusiast
Lexi
Posted
  • Author

Thanks for the replies! It's definitely weird - I quit eating the hemp milk and hemp milk ice-cream, and a week later my hair was already getting softer, and I was feeling a little better. I just don't understand WHY I would react to hemp like that. I started using Good Karma milk, but still don't totally trust them. They say that their vanilla milk is soy free, and one of the ingredients is soy lechithin. I have written to them several times, and never get a response. Their ice-cream also does not agree with me, but it definitely contains soy. As for the coconut milk and ice-cream - if I eat it, I have the same reaction as I do with gluten. But, I'm starting to wonder if maybe it has something to do with my candida problem. However, I just got off of a 30 day dose of 200mg of diflucan. Crazy!!

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