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Still Have Active Coeliac Disease

Mack the Knife

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TimothyRyan Rookie
TimothyRyan
Posted

wait. how old are you? Xanax is an anti-anxiety. It is very effective, but also addictive. And for me, it works wonders on calming me down during gluten times. Or any stomach/intestinal related issues.

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ravenwoodglass Mentor
ravenwoodglass
Posted

What is Xanax?

Xanax is similiar to Valium and the name brand is not gluten free. It is an antianxiety med. I take the generic form, alprazolam, made by sandoz. It is addictive and a controlled substance. Your doctor can prescribe it if there is a need. Be aware that with long term use it can be hard to get off of and you should not stop it cold if you have been on it awhile. Acupuncture, excersize and psychotherapy may be helpful if your anxiety levels are high and a short term issue they can help alot. You might want to consider trying those before going to a med.

Mack the Knife Explorer
Mack the Knife
Posted
  • Author

wait. how old are you? Xanax is an anti-anxiety. It is very effective, but also addictive. And for me, it works wonders on calming me down during gluten times. Or any stomach/intestinal related issues.

I'm 36 and no, I haven't heard of it. But it might possibly be sold under another name here.

I've never suffered from anxiety though. Besides the GI issues, my neuro symptoms are brain fog, dizziness, exhaustion, finger numbness and occasional vision issues (ie seeing weird flashes and patterns of light). Does it work for symptoms besides anxiety?

  • 3 weeks later...
Mack the Knife Explorer
Mack the Knife
Posted
  • Author

I just thought I'd post an update.

I did end up cutting our all grains and flours (except for a bit of white rice) from my diet about three weeks ago. And for the last week and a half I have been feeling really good. My energy is up, my bowels are starting to behave themselves, I am less constipated that I have been in ages and my sex drive has suddenly seen a flicker of life.

So I am hopeful that contaminated flours were my problem and that is resolved now.

I think I'll try re-introducing certified gluten free products back into my diet and see how that goes.

starrytrekchic Apprentice
starrytrekchic
Posted

Glad you're doing better. One thing I didn't see mentioned was pet food--I've cc'd myself with catfood, so if you have pets, check their food ingredients.

Also, things like instant and flavored coffee can be a problem.

Mack the Knife Explorer
Mack the Knife
Posted
  • Author

Glad you're doing better. One thing I didn't see mentioned was pet food--I've cc'd myself with catfood, so if you have pets, check their food ingredients.

Also, things like instant and flavored coffee can be a problem.

Hmmm. I do have cats. I had better check their food.

dilettantesteph Collaborator
dilettantesteph
Posted

Glad you are doing better. Something I have done with grains. Buy whole, sort and remove suspicious looking grains. Wash, dry and grind. It's a pain, but seemed to work. Unfortunately certified didn't work for me. The allowed levels seem to be too high.

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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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