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

Feeling Really Stupid Right Now


kwylee

Recommended Posts

kwylee Apprentice

I have recently been diagnosed as gluten/casein sensitive, and I can't believe I did this, but I actually purposely ingested something called Whole Grain Biotic, sold by Donna Gates on her Body Ecology Diet website. The reason I thought it was going to be OK is because she said that although there there were 7 ppm of gluten in her liquid probiotic (a fermented liguid that actually had the taste of beer), that 7 ppm was well below the 20 ppm threshold to call it gluten free, and that the fermentation process renders the gluten non-reactive, or somthing like that. In any event the website states that this is the probiotic to take if you are gluten sensitive or intolerant. So I figured, OK I need a probiotic in the mix, so I ordered it.

Luckily I only took a teaspoon as a test. I haven't put ANYTHING in my system (or outside of my body for that matter) in the last few weeks that had any suspicion of containing gluten or casein, only unprocessed non-reactive foods, and my diet has consisted of only 12 foods total. I always do a taste test and wait a few hours when including a new food, I don't care what it is. But within ten minutes of taking the teaspoon, I developed a reaction, and for me, that's dizzy, anxious, & blurred vision. And I had been feeling so great the past couple days. Here it is, an hour later, and while the first reaction was bad only for a couple minutes, I still have that familiar feeling as if my skin is jumping with a bit of a light head. I've had it much worse than this, so I am sure I'll be OK, but like I said, I feel like a bonehead.

I don't know if I am still just super sensitive, being so new into my new way of eating (that I actually love because it makes me feel like I could conquer the world, when before, the world was a scary bother for me with my main overt symptoms being largely neuro-connected.

Of course, I never intend to re-ingest the "Whole Grain Biotic" again, but wanted to let others know in case they were considering it. I know everyone is different. And like I said, perhaps I am super sensitive.

So here's the problem now. I still need a probiotic and also vitamins, preferably LIQUID vitamins, that are gluten free, casein free and even soy free, as I seem to react a bit to that too. I know I need to do something because I need to supplement my sparse diet along with something to help my intestines heal.

Any ideas or comments?


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



Celiac.com Sponsor (A8-M):



tictax707 Apprentice

Unfortunately I don't have any ideas for the liquid probiotics and vitamins, so I apologize for that... But I wanted to say - don't feel stupid! You did your research and made an educated decision. You are being very vigilant about your health. You are being cautious and smart. Beating yourself up over it only serves to make you feel worse. I would like to congratulate you on your extensive research and effots to stay on top of things. That will serve you will in the long run as you get this disease sorted out. :D Regardless, I am very sorry that you are having a negative reaction. :(

I would actually be a bit suspicious of the other ingredients in the mix as well - not that they contain gluten, but that they contain other ingredients that your body doesn't like. It's kind of odd that it hit you so fast - did you take it on an empty stomach? That may also have intensified the reaction to whatever it is.

Again, I am really sorry that you are feeling like crud. I understand that frustration of feeling like you are set back after feeling good. It sucks. Here's wishing you a speedy bounce back!! :)

quincy Contributor

I have recently been diagnosed as gluten/casein sensitive, and I can't believe I did this, but I actually purposely ingested something called Whole Grain Biotic, sold by Donna Gates on her Body Ecology Diet website. The reason I thought it was going to be OK is because she said that although there there were 7 ppm of gluten in her liquid probiotic (a fermented liguid that actually had the taste of beer), that 7 ppm was well below the 20 ppm threshold to call it gluten free, and that the fermentation process renders the gluten non-reactive, or somthing like that. In any event the website states that this is the probiotic to take if you are gluten sensitive or intolerant. So I figured, OK I need a probiotic in the mix, so I ordered it.

Luckily I only took a teaspoon as a test. I haven't put ANYTHING in my system (or outside of my body for that matter) in the last few weeks that had any suspicion of containing gluten or casein, only unprocessed non-reactive foods, and my diet has consisted of only 12 foods total. I always do a taste test and wait a few hours when including a new food, I don't care what it is. But within ten minutes of taking the teaspoon, I developed a reaction, and for me, that's dizzy, anxious, & blurred vision. And I had been feeling so great the past couple days. Here it is, an hour later, and while the first reaction was bad only for a couple minutes, I still have that familiar feeling as if my skin is jumping with a bit of a light head. I've had it much worse than this, so I am sure I'll be OK, but like I said, I feel like a bonehead.

I don't know if I am still just super sensitive, being so new into my new way of eating (that I actually love because it makes me feel like I could conquer the world, when before, the world was a scary bother for me with my main overt symptoms being largely neuro-connected.

Of course, I never intend to re-ingest the "Whole Grain Biotic" again, but wanted to let others know in case they were considering it. I know everyone is different. And like I said, perhaps I am super sensitive.

So here's the problem now. I still need a probiotic and also vitamins, preferably LIQUID vitamins, that are gluten free, casein free and even soy free, as I seem to react a bit to that too. I know I need to do something because I need to supplement my sparse diet along with something to help my intestines heal.

Any ideas or comments?

sorry to hear of your trouble. I know what its like to be doing well for a few days and then get hit by something.

my nutritionist recommended a probiotic that only she can order. if you have a nutritionist ask him/her about that.

also, I just came from my appt at the celiac disease center at columbia univ. and I was told to order a multivitamin called Freedavite. you can go to it online.

hope that helps. oh, if it is ok to mention the probiotic is by Prothera. google there website, but as I mentioned, only a dietician or nutritionist can order it.

kwylee Apprentice

Thanks quincy for the info on the vites and probiotic! That was a tremendous help. I'll check it out.

And thanks tictax707. It always helps to know there is someone I can tell these things to who understands.

I felt really weird for a couple hours, but the rest of the day, I had boundless energy. SO THANKFUL!!!!!

Mari Enthusiast

I'm aso very sensitive to gluten and had to learn that I couldn't even tolerate a trace of gluten. I use goat's milk yogurt - I'm making a batch tonight and get my probiotics that way. I found this at the Specific Carbohydrate Diet website. I have been using the SCD for quite a while now and have been able to add foods back to my diet and get most of my vitamins from the food I eat.

FraggleK Newbie

I'm not aware of them having liquid forms, but Country Life makes an entire line of casein and gluten free vitamins as well as a probiotic. I haven't checked it for soy since that hasn't been suspect for me to date.

ravenwoodglass Mentor

I'm not aware of them having liquid forms, but Country Life makes an entire line of casein and gluten free vitamins as well as a probiotic. I haven't checked it for soy since that hasn't been suspect for me to date.

I take the Country Life and haven't encountered soy in any of the ones I take. Haven't checked them all though.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.