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gluten free overseas

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gluten free overseas Apprentice
gluten free overseas
Posted

I think I was glutened really badly. I bought some buckwheat flour--the same flour I've bought in the past. It looked different, but I bought it anyway. I made bread and pancakes with it and am in really bad shape now.

I get immobilizing anxiety, I feel like I'm losing my mind. Along with vomiting and pain in my back too. I'm so discouraged. After about 5 hours, I'm able to breathe enough to sit in a chair and watch TV or check email.

I'm having flashbacks of being in the hospital and being in so much pain and the doctor saying he couldn't do anything else. I thought I was dying back then. I know I'm not dying now, but it feels like it.

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rosetapper23 Explorer
rosetapper23
Posted

I'm so very sorry you were "poisoned." Gluten seems to act like poison with so many of us with celiac. I wish there were something I could say to make you feel better....but I know that you just have to get through the worst of it before that can happen.

I fully understand what you're going through...and I hope you start feeling better soon.

Keep thinking, "Better times ahead...."

eatmeat4good Enthusiast
eatmeat4good
Posted

God, I hate that feeling of going downhill when you know you have been glutened. I wish I only had the gastrointestinal problems, but I have full on neurological problems...anxiety and despair set in and it seems it will never go away. It is horrifying. I know what you are going through. Sorry you have to go through it. I was lost completely when Dr.'s said they couldn't help....so I know the despair of that feeling too. Hopefully this will pass quickly and you will be ok soon. At least we do know these episodes are temporary in spite of how horrifying they can be. hang in there.

gluten free overseas Apprentice
gluten free overseas
Posted
  • Author

Thank you for the encouraging words. I helps me a lot. I woke up today, and I couldn't open my eyes--my whole face had just sagged. And I couldn't feel my hands, and I couldn't breathe very well. I get really down on myself for freaking out and like losing my mind, but you know, that does feel a little bit like you are dying. So I'm doing a bit better. It'll probably be a couple of days.

AVR1962 Collaborator
AVR1962
Posted

Try to be patient with yourself. I do understand exactly what you are saying. I get so depressed when I get glutened. My speach and balance are affected and I too feel like I am losing my mind and do crazy dumb things like leaving on burners and buying food for a planned meal twice. I sometimes wonder if I am ever going to figure it out but then when I get to feeling better I realize I have just got to be careful. Part of it is learning what works and what doesn't and forgiving ourselves for our mistakes and moving on.

Juliebove Rising Star
Juliebove
Posted

Sorry to hear that. Gluten isn't an issue for me. But I do have an egg allergy. A couple of weeks ago I stupidly ate a bite of the gluten-free bread on my daughter's sandwich, totally forgetting that the wrapper listed egg in the ingredients. And then I paid for it. It happens.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for the encouraging words. I helps me a lot. I woke up today, and I couldn't open my eyes--my whole face had just sagged. And I couldn't feel my hands, and I couldn't breathe very well. I get really down on myself for freaking out and like losing my mind, but you know, that does feel a little bit like you are dying. So I'm doing a bit better. It'll probably be a couple of days.

Unless these are regular glutened symptoms for you it would be a good idea to visit the doctor or even the ER. We tend to forget that not all symptoms are gluten related and you could have something else going on. The not being able to open your eyes and sagging has me a bit concerned. Do give us an update on how you are doing.

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gluten free overseas Apprentice
gluten free overseas
Posted
  • Author

I'm doing better today! Thanks everyone. I am still lying around, but I've definitely turned a corner. Raven, is that a picture of your new dog? She is so cute.

I wonder if I ought to get counseling.

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm doing better today! Thanks everyone. I am still lying around, but I've definitely turned a corner. Raven, is that a picture of your new dog? She is so cute.

I wonder if I ought to get counseling.

Glad to hear you are doing better. That picture is of my little Pooh Bear when he was a couple years old. I have got to try again to get a picture of Maggie, she is a Blue Merle Dapple Doxie and adorable also. I have trouble resizing pics and the ones I have taken so far are too big. Thats my task for today.

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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