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Finally Getting Somewhere!

Ox on the Roof

By Ox on the Roof
in Coping with Celiac Disease

Recommended Posts

Ox on the Roof Apprentice
Ox on the Roof
Posted

So, I don't have an official diagnosis, and my IgG and IgA blood work was negative. But why else would I be doing so well when I am cooking gluten-free at home - for a month now - and then get sick every time I eat out and make "educated guesses"?

After reading a bunch of stuff about McDonald's fries, I decided to give them a go. Within an hour, I started with the upper GI symptoms. I sound like Buddy the Elf after he drank the soda! Pepto Bismol is my friend. (A big THANKS to whoever gave me that suggestion!) Of course, I also had the Bacon Ranch salad with no chicken. So I am not sure exactly what the culprit was, but it was definitely something I ate.

Official diagnosis or no, gluten intolerance or Celiac, WHATEVER...I cannot eat gluten! It's a good feeling to finally get a clue as to what's been wrong with me for almost two years. Now, if I can just learn how to eat out without getting sick!

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mushroom Proficient
mushroom
Posted

Well, can you try not eating out for a while, until you master the diet and learn all the hidden sources of gluten first? Then you can start figuring out how the restaurants can cross-contaminate you :P

GFinDC Veteran
GFinDC
Posted

Sounds like you are getting somewhere with your diet changes at home. It doesn't matter a whole lot what it's called, celiac or gluten intolerance, if it makes you sick then staying away from it is the right thing to do. Congrats on getting some food traps figured out! :)

Skylark Collaborator
Skylark
Posted

I've given up on making educated guesses eating out. Either the restaurant has a gluten-free menu or I don't go there.

Ox on the Roof Apprentice
Ox on the Roof
Posted
  • Author

mushroom, I am starting to think that's the best way to go. My family usually eats out once a week with my in-laws. It's like Russian roulette! My family is very supportive, but I've been sick for so long that I hate imposing on them. But my new thought is that it isn't imposing on ANYONE to just have something to drink and maybe a plain baked potato, then eat when I get home.

gluten-free - thanks! It's WONDERFUL to feel better! Today marks one month gluten-free, and after tomorrow I will have survived the two biggest holidays (Thanksgiving was day one).

Skylark - I hear ya! With McD's, well...I don't even like that place, but they have an indoor playground, which is nice for my kids when it's freezing outside. I checked their website before I left and thought I was doing good, but my first bite of French Fry tasted weird to me. After about six fries, I realized that they tasted like McNuggets! I think they were fried together. At least it only lasted that night.

tea-and-crumpets Explorer
tea-and-crumpets
Posted

I've given up on making educated guesses eating out. Either the restaurant has a gluten-free menu or I don't go there.

I'm pretty much the same way. I have found that I trust chains (PF Changs, Biaggi's) more than I do local places, though -- I ate off the gluten free menu at a local place and got really sick. I feel like chains are more afraid of legal action so they really train their staff. I might be crazy, but it has worked for me so far.

Juliebove Rising Star
Juliebove
Posted

We do eat out a lot, but... We eat at the same places. We have food allergies, not celiac. We try to find places that cook the food from scratch (for the most part anyway). We tell them of our food allergies and they cook special meals for us. Often we order side dishes that we know are safe (except perhaps for cross contamination) such as canned or fresh fruit, bacon, cottage cheese, Hormel chili (not scratch, but safe) or in the case of a place like McDonalds, only the prepackaged items like the apple slices.

We do also eat at places with gluten-free menus.

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

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    • 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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