Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Am So Stupid


MJ-S

Recommended Posts

MJ-S Contributor

So, since I went gluten free January 1, here are my KNOWN accidental glutenings:

Soy milk (Edensoy) fortified with BARLEY (realized about 1.5 months in, basically started over at that point)

French fries in a restaurant from fryer that had flour in it (I still had the *testing* mindset - the dangers of negative bloodwork)

gluten-free Bread in regular toaster (newbie mistake 101)

Crabstick in sushi restaurant (and I was so proud of myself for avoiding the soy sauce dry.gif)

Two bites of fish accidentally covered in bread crumbs at Not Your Average Joes (chain in Boston) which was ordered from the GLUTEN FREE menu. ARGGGHHHHHHH

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm still feeling brain foggy/sleepless/gassy/stomach pains/exhausted/white tongue at least once per week. I haven't been able to pin down any other intolerances (besides dairy, which I also can't and don't do) from my food diary.

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Don't forget your vitamin pills, and any meds you might take need to be gluten-free also. Tea and any drinks for that matter need to be gluten-free as well.

jenngolightly Contributor

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

It's a steep learning curve and you've just started the climb. Be kind to yourself and celebrate your successes! Woo hoo, you changed your toothbrush! {{{Hugs}}}

domesticactivist Collaborator

You're not stupid. The sneaky stuff is hiding all over the place!

Here are a few more things you might have missed (I say so only because we missed them at first):

Wood utensils

Cutting boards

Serrated knives

Scratched plastic or teflon (we switched to all stainless, glass/pyrex and (reseasoned) cast iron)

Surfaces from the kitchen that you haven't cleaned since baking (we store our glass jars on top of the cabinets - had to wash all of those and wipe down the surface!)

Condiments you had before going gluten free

Spices you had before going gluten free

Personal care products

Also, it's a good idea to really soak/rinse naturally gluten free nuts, beans, grains, and grain-like things before cooking or eating them.

Good luck, and congrats on noticing the toothbrush :)

Dee777 Rookie

So, since I went gluten free January 1, here are my KNOWN accidental glutenings:

Soy milk (Edensoy) fortified with BARLEY (realized about 1.5 months in, basically started over at that point)

French fries in a restaurant from fryer that had flour in it (I still had the *testing* mindset - the dangers of negative bloodwork)

gluten-free Bread in regular toaster (newbie mistake 101)

Crabstick in sushi restaurant (and I was so proud of myself for avoiding the soy sauce dry.gif)

Two bites of fish accidentally covered in bread crumbs at Not Your Average Joes (chain in Boston) which was ordered from the GLUTEN FREE menu. ARGGGHHHHHHH

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm still feeling brain foggy/sleepless/gassy/stomach pains/exhausted/white tongue at least once per week. I haven't been able to pin down any other intolerances (besides dairy, which I also can't and don't do) from my food diary.

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

Awww you are not stupid, only learning! Almost everything you mentioned I have done too with the exception of the Average Joes, but I WAS glutened at Chili's a couple weeks ago and am still sick as the proverbial dog :(

Don't feel bad about the slip ups, we have so much to learn and it's so overwhelming! I was diagnosed Jan. 25 and am having a terrible time getting used to this too. Keep your chin up!

Dee

modiddly16 Enthusiast

You're not stupid at all, it was and is a learning curve for all of us. Heck, back when I was diagnosed, they were still saying that Rice Krispie treats were gluten free before realizing that malt was on the list of no nos. I regularly ate those and Twizzlers, because honestly, who would've thought there'd be wheat in those!? It was one of those days at a baseball game that I just didn't feel good and I finally happened to look down at the package and saw WHEAT FLOUR. I was super happy about it.

Hang in there, it'll get easier!

WhenDee Rookie

You aren't stupid! I have done far stupid-er things than what you listed here, LOL.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

You aren't stupid. Some of us are sensitive to lower levels of gluten than others. I am one of these super sensitive celiacs. It takes us longer to figure out the gluten free diet since there are more precautions which we have to take. Keeping a food diary will help. Also try not to change more than one thing per week because it can take a few days to notice a reaction. It took me a couple of years to figure out my diet, but in the meantime I did continue to improve. You will get there.

MJ-S Contributor

Thank you for all the support! It's a learning curve and I just need to be patient.

One of the dangers of negative blood work is that I've felt that I couldn't possibly be soo sensitive as to have to throw out my favorite wooden spoons which have been washed multiple times since the kitchen went gluten-free (or could I)?

So after not feeling great last week after I stirred gluten-free pasta with an old spoon, I bit the bullet and put aside all my wood utensils. Am now using only the one new spoon I just bought, and will replace the rest. I think I'm already following all your other suggestions. So far so good.

Loey Rising Star

So, since I went gluten free January 1, here are my KNOWN accidental glutenings:

Soy milk (Edensoy) fortified with BARLEY (realized about 1.5 months in, basically started over at that point)

French fries in a restaurant from fryer that had flour in it (I still had the *testing* mindset - the dangers of negative bloodwork)

gluten-free Bread in regular toaster (newbie mistake 101)

Crabstick in sushi restaurant (and I was so proud of myself for avoiding the soy sauce dry.gif)

Two bites of fish accidentally covered in bread crumbs at Not Your Average Joes (chain in Boston) which was ordered from the GLUTEN FREE menu. ARGGGHHHHHHH

And this weekend, I realized that I was still using the same tip on my Sonicare toothbrush from before going gluten free. OMG. After all the tossing of food and products, this just never occurred to me!

I'm still feeling brain foggy/sleepless/gassy/stomach pains/exhausted/white tongue at least once per week. I haven't been able to pin down any other intolerances (besides dairy, which I also can't and don't do) from my food diary.

I'm paranoid that I'm getting somehow hit at work (food haven around here) but I'm hoping the toothbrush will be a turning point (fingers crossed). Sigh...

You are NOT stupid. We all are learning our way around this illness. I'm pasting below a link to a list of medications that are "supposed" to be gluten-free. Check the labels anyway. Also Triumph Dining has a whole series of grocery books, restaurant locators and dining cards that explain celiac in the language of the restaurant and the in english on the other side. Hope this helps!

Loey

Open Original Shared Link

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.