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Please Help?!?!

Zook

By Zook
in Coping with Celiac Disease

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Zook Newbie
Zook
Posted

Hi everyone. I haven't posted here in about 7 months, since I discovered that hidden MSG was the main source of my problems. I forget who it was here that mentioned it, but I couldn't be more thankful.

So here's the deal. Currently, MSG holds a status of GRAS (generally recognized as safe) by the FDA. This puts it in the category of salt and pepper. Right now we have the opportunity to be heard by the FDA, but unless they receive enough comments on the petition, they will not even consider it.

There is a citizen's petition at: Open Original Shared Link, which I urge anyone to at least read. Click on the document by John Edward Erb - Citizen Petition. Then you can review the pdf document and (I hope) click on the comment balloon and enter your comments to support that the GRAS status be removed from MSG.

I really do hope you'll help. Getting the word out to your friends and family would be helpful too.

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Rachel--24 Collaborator
Rachel--24
Posted

Even without a noticeable reaction MSG can be damaging to our health. We are also getting PLENTY of it in most processed foods. Most of the MSG we consume is not labeled in the ingredients since they have found ways to "hide" it by processing it into other "safer sounding" ingredients.

Its another neurotoxin that we are constantly exposed to unnecessarily. Its cheap, it allows food manufacturers to use lesser quality ingedients in their product, it enhances the flavor of the food and it affects the part of our brain which tells us when we're full. We eat more and in the end the only poeple benefiting are the ones who are making a profit by adding this neurotoxin into our food.

Zook Newbie
Zook
Posted
  • Author

Thanks for adding that Rachel. :P It's a refreshing response from the ones I normally get (i.e., MSG is a great flavor enhancer and it's totally safe...).

ps. I think it was you who lead me to the MSG connection. Thanks!

Zook Newbie
Zook
Posted
  • Author

I have a question about dairy and Celiacs. Can those with Celiacs tolerate it? If not, has anyone tried raw milk? It's not the same product as milk destined to be pasteurized (picture cows standing around in a small cramped area full of feces and not cared for vs. cows on lush green pastures that are treated as part of the family). It's even safer than pasteurized milk, no thanks to the biased studies and bad rap from industrialized dairy. Anyway, I thought I throw that out there since many people who can't tolerate dairy can tolerate raw dairy (though it should be called real dairy).

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  • Recent Activity

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      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
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    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Pain in the right side of abdomen

      By Scott Adams · Posted

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    • knitty kitty
      Pain in the right side of abdomen

      By knitty kitty · Posted

      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      1 Year Elimination Diet journey

      By Aretaeus Cappadocia · Posted

      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
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