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Need some advice.

Christory77

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Christory77 Rookie
Christory77
Posted

So this is all new to me. Had an endoscopy done. Showed inflammation, some biopsies were taken etc. researching going gluten free and I'm completely baffled. What I've read says even a trace of gluten can be "poisonous"( sorry for the dramatics) to a person with celiac, yet gluten free doesn't mean 0 gluten. How is that supposed to provide any peace?  Someone said to get rid of even appliances that had gluten in them due to contamination. How is it that crumbs in a toaster are worse than gluten in supposedly gluten free food? The diet itself doesn't scare me. I've actually found comfort in all the gluten free options. Baking mixes, doughs, pasta, pizza crusts, etc. I was very pleased that I could maintain eating what I like with relatively minor adjustments. The concern being that even doing this, there's still a possibility of consuming gluten just makes me feel like I'm never going to get ahead with this. Any advice?

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Ennis-TX Grand Master
Ennis-TX
Posted
30 minutes ago, Christory77 said:

So this is all new to me. Had an endoscopy done. Showed inflammation, some biopsies were taken etc. researching going gluten free and I'm completely baffled. What I've read says even a trace of gluten can be "poisonous"( sorry for the dramatics) to a person with celiac, yet gluten free doesn't mean 0 gluten. How is that supposed to provide any peace?  Someone said to get rid of even appliances that had gluten in them due to contamination. How is it that crumbs in a toaster are worse than gluten in supposedly gluten free food? The diet itself doesn't scare me. I've actually found comfort in all the gluten free options. Baking mixes, doughs, pasta, pizza crusts, etc. I was very pleased that I could maintain eating what I like with relatively minor adjustments. The concern being that even doing this, there's still a possibility of consuming gluten just makes me feel like I'm never going to get ahead with this. Any advice?

Everything with the gluten-free certification must be below 20ppm in a lab test. THAT is much much less then a crumb. Toasters are cheap just get a new ones. If you eat whole foods only your chances are much much less of getting CCed. We normally suggest no gluten-free processed foods (dough, mixes, chips, crackers. breads etc) for the first few months only eating whole foods to boost your healing also remove dairy and oats as they can be hard to process with the initial damage (Diary requires the enzyme lactase which is produced by the tips of the villi in the intestines which are the most damaged).   To make it much easier clean our your microwave really goods, put down some paper towels in the bottom when you use it and get some nordicware microwave cook ware, a new mixing bowl. measure cup, spatula, and some basic eating and cooking utensils and you can start fixing stuff that way starting off without worry. I love steamed veggies, omelettes, etc done this way so tender and easy to digest.  I might also suggest using freezer/butcher paper for a clean prep surface starting off also makes clean up a breeze since you just trash it when done.  You can get the rest of you appliances, pots, pans and everything else changed over later. And this makes it simple to get started....PS crockpot liners are a life saver and making huge pots of stew, or roast in them from raw ingredients is super simple and you can eat on it for days.

RMJ Mentor
RMJ
Posted

Many celiacs can eat 10- 20 mg of gluten per day (10-20 ppm in one kilogram of food) without adverse effects.  That is roughly equivalent to 1/16-1/8 teaspoon flour.  More than a trace, but still a small amount.  Some of us cannot handle that amount.

Christory77 Rookie
Christory77
Posted
  • Author

Thanks. Still figuring it all out. 

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

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      Contact them.
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