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Sometimes I Can Tolerate Carrageenan, Sometimes I Can't?

Pyro

By Pyro
in Coping with Celiac Disease

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Pyro Enthusiast
Pyro
Posted

Emphasis on CARRAGEENAN because it took me 5 minutes to learn how to spell! And I still don't get it.

Sometimes I can drink something like say pacific hazelnut milk and have no problems. It will make me feel kind of full but that's to be expected. But then I'll go and drink something like Silk or pacific almond milk and my stomach will instantly bloat and cramp.

What's with that?

Right after I posted this, I read the health concerns found here:

Open Original Shared Link

Hmmmm... Still I wonder why we do fine with it at least some of the time.

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jnclelland Contributor
jnclelland
Posted
Emphasis on CARRAGEENAN because it took me 5 minutes to learn how to spell! And I still don't get it.

Sometimes I can drink something like say pacific hazelnut milk and have no problems. It will make me feel kind of full but that's to be expected. But then I'll go and drink something like Silk or pacific almond milk and my stomach will instantly bloat and cramp.

What's with that?

Maybe your problem is soy? Pacific's almond milk contains soy lecithin, but their hazelnut milk doesn't.

Jeanne

sickchick Community Regular
sickchick
Posted

I can't tolerate soy lecithin OR carageenan... and it makes me crazy! :) HAHAHA

Pyro Enthusiast
Pyro
Posted
  • Author
Maybe your problem is soy? Pacific's almond milk contains soy lecithin, but their hazelnut milk doesn't.

Jeanne

Wow, maybe! Though soy sauce, soy ice cream, tofu, and lechitin don't seem to bother me.

mslee Apprentice
mslee
Posted

I'm wondering about these too.

Seems like they both cause problems, I've been using rice milk and it seems ok

this is so weird, really we just experiment with all these things until we can tell what exactly is the problem ingredient???

I tried making an allergist apt and they had never heard of celiac, the lady wanted to know if it was something they put in food. They other office I called said they had never heard of it either and that if any of my allergy tests came back neg. my insurance would not cover them.

guess I have more phone calls to make.

Is there any other option???

RiceGuy Collaborator
RiceGuy
Posted

There's also the possibility of CC, which can vary from batch to batch. So one time it might bother you, and the next time not.

But anyway, if you have a blender, you can make your own nut/rice/soy milks. It'll save you money, and you get to choose the ingredients. Some xanthan gum or guar gum works fine in most cases. I've done this many times.

  • 2 years later...
Austin Guy Contributor
Austin Guy
Posted

I got glutened this morning and paid the price in the bathroom, but started feeling better more quickly than usual. Then I had canned soup late in the day that contained carrageenan, which I knew nothing about. I was in the bathroom several times within 25 minutes just as if I had been glutened again.

I have had the same soup when feeling non-glutened a couple of weeks ago and was fine. Is my reaction to this stuff perhaps turned up a notch because of accidental gluten ingestion? Can getting glutened make people more sensitive to other food products? Seems like it would.

Still so very new to this - some adventure!

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
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      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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