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In Desperate Need Of Encouragement

Jai

By Jai
in Coping with Celiac Disease

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Jai Rookie
Jai
Posted

My title says it all. I'm new here. Have been helped a lot by reading for the pat few months and finally decided to join. Here's my too-long story. I apologize in advance. I'll make it point-form!

-March randomly fainted...followed by a week of dizzy spells

-March - June continued to have random dizzy spell, felt faint, light headed, had migraine with aura for 1st time ever, caught every cold, flu, bug going around.

June got sick. Couldn't get out of bed for 2 weeks kind of sick, loss of appetite, diarrhea, fatigue, weakness, dizziness, lost 10lbs in 1 week Bad. Went to ER, found nothing, but clued in that my mom has celiac and I had the exact same symptoms that she had before diagnosis. So, did the blood test, went home and immediately went gluten-free. Took over 2 weeks for results in which time I was very slowly but also very definitely improving. Results were "inconclusive" and I postively refuse to eat gluten to do biopsy!

Digestive symptoms improved quickly, but took all summer to get any sort of strength/energy back and get rid of brain fog. Don't work in summers and it's a good thing. No way I could have worked.

End of August started back to work (home daycare) which was extremely difficult and caused me to have anxiety/ sleeping problems. I overcame it within a few weeks realizing that I can do it!

mid Sept had a set back of abdominal pain. The Dr's guess was gastritis or ulcer caused by Advil. Took about a month to finally start seeing an improvement. Again, just when I though I was overcoming that I had a major bout of diarrhea last night like I've never had in my life! Today I'm left weak, exhausted and wondering where the light at the end of the tunnel is.

In 2 weeks I'm seeing a gastro for the 1st time in all of this! Gotta love our health care system here in Canada. Don't have colon cancer, so I'm not much of a priority...as I was actually told in emerg!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board and sorry you are having such a hard time.

You mention starting up a home daycare. Do you also the kids in the day care to consume gluten in the house? If you do that may account for your setback. We even need to be careful with stuff like Playdoh and paints for the kids as those can be an issue for us.

Eat as much whole unprocessed food as you can and be careful to avoid cross contamination and hopefully you will be feeling better soon. We can have real ups and downs for a bit. Some of us will develop other intolerances with soy and dairy being the most common. If you consume either you may want to drop them for a bit and see if that helps.

Jai Rookie
Jai
Posted
  • Author

Thanks. I initially eliminated dairy, and successfully reintroduced small amounts, although every time I have a setback I cut it out again. I also eliminated soy as it made my throat itchy when drinking soy milk....

The daycare eats a regular diet, and I believe that I am careful with their food and PlayDoh.....

Maybe last night was just a `fluke` who knows... I feel like it`s always a guessing game.

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  • Posts

    • 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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