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

How Often Do You Get Glutened?


Crayons574

Recommended Posts

Crayons574 Contributor

On average, how often do you get glutened? (This includes being careful about CC, etc.)


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



Celiac.com Sponsor (A8-M):



NorthernElf Enthusiast

These days I am so careful that I rarely get glutened. However, once in awhile - probably every few months or so - I get hit. I do live in a gluten household, although I have specific counters and cookware for myself. Sometimes I don't realize I've been hit until a couple of days afterwards. I'm just getting over a glutening right now. My symptoms were extreme fatigue, extreme crabbiness :angry: (I just wanted to be left alone), a night of stomach cramps (should have been the tip off), and some bathroom issues. :P I am a fitness instructor and I almost passed out in one of my classes - got very light headed and had to stop moving for a few minutes and just tell the class what to do. Never happened to me before !

One of two things got me - I made my chocolate chip cookies with M&M baking bits (safe) and Great Value brand butterscotch chips...might have been the GV chips but they usually say gluten in the ingredients if there is any. More likely the culprit was the hard candy I nibbled on at work...it was hommade and looked to be all sugar but was probably made in a gluteny pan. Those kind of risks are what usually get me - I usually avoid anything homemade unless I made it. I am usually super careful - my downfall is when I am hungry. I never intentionally gluten myself - it's so not worth it. I guess one should assume nothing is safe unless it is labelled gluten-free or confirmed gluten-free online.

tarnalberry Community Regular

Once or twice a year, usually from contamination at a restaurant (though I got out to eat more like once a month).

LDJofDenver Apprentice

I'm kind of like NorthernElf -- I'm careful, but something sneaks in and gets me every couple of months. Usually not at home, as we're pretty on top of things in the homestead (I'm gluten free, my husband is not). Last time was at a friend's house, she was sure she made something "safe" (a crock pot dish with rice, chicken, squash and other vegetables). Either was some spice she used, or brand of chicken broth, or perhaps she'd previously made something with flour or pasta in the crock pot and traces remained. Oh well, I took the risk - and didn't want to scrutinize every container and spice bottle she used - so I paid the piper. Time before that was at a restaurant that reportedly had a gluten free menu -- something obviously cross-contaminated in the kitchen or handling.

I'm pretty careful, but in spite of that it happens once in a while. I guess if we never ate out anywhere or at anyone's house I could eliminate even that but, hey, you've got to live. For all the times we eat out, contamination really is a pretty rare occurrence.

lizard00 Enthusiast

My last glutening was a couple of months ago from a restaurant... which is usually where it happens. Our house isn't totally gluten-free, but anything that has gluten is prepackaged. Nothing that has gluten in it gets cooked here. That significantly cuts down the risk off CC.

maile Newbie

right now, too often. I also live in a mixed household and am careful but occasionally get glutened. I'm not sure what did it this time, but this week was horrible, D, bloating, cramps, nauseau, cranky, anxious. I cut down to rice and vegetables for 2 days to try and clear my system, think I'll go another couple of days <_<

plus I also found out there's a good chance that this drug I take for cystic acne is NOT gluten free in the 100mg size...annoying

oceangirl Collaborator

More often than I'd like-probably once or twice every two months. Often I cannot trace the culprit but I think it might be linked to the rare occasions my spousal equivalent eats gluten.(He usually doesn't) He is incredibly careful, brushes and flosses afterward, but I think that cakes or cookies or bread is difficult to free yourself of somehow. To speak plainly, if we are intimate after he's eaten gluten, there is a strong correlation in a glutening- excellent incentive for him to avoid it.

We live in a gluten-free house, RARELY eat out and make almost all our food from whole ingredients so it is frustrating at times. I will add that I am HIGHLY sensitive which will teach me to have silently scoffed at the thought of such miniscule (sp?) CC when I was first diagnosed. I still keep a food log and that is still helpful at times. I HATE gluten- it scares me because the symptoms are so intense and persistent.

lisa


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

More often than I care to admit at this stage of the game. :ph34r:

Seriously though, it is usually when I am careless in reading a package, want an item so bad that I don't check on 'natural flavors' before I eat it or when I eat something that is 'processed on a shared line with...' (those don't get me all the time so it's like playing roulette). So a lot depends on how much processed foods I have been eating.

peacebwu Rookie

These days I am so careful that I rarely get glutened. However, once in awhile - probably every few months or so - I get hit. I do live in a gluten household, although I have specific counters and cookware for myself. Sometimes I don't realize I've been hit until a couple of days afterwards. I'm just getting over a glutening right now. My symptoms were extreme fatigue, extreme crabbiness :angry: (I just wanted to be left alone), a night of stomach cramps (should have been the tip off), and some bathroom issues. :P I am a fitness instructor and I almost passed out in one of my classes - got very light headed and had to stop moving for a few minutes and just tell the class what to do. Never happened to me before !

One of two things got me - I made my chocolate chip cookies with M&M baking bits (safe) and Great Value brand butterscotch chips...might have been the GV chips but they usually say gluten in the ingredients if there is any. More likely the culprit was the hard candy I nibbled on at work...it was hommade and looked to be all sugar but was probably made in a gluteny pan. Those kind of risks are what usually get me - I usually avoid anything homemade unless I made it. I am usually super careful - my downfall is when I am hungry. I never intentionally gluten myself - it's so not worth it. I guess one should assume nothing is safe unless it is labelled gluten-free or confirmed gluten-free online.

peacebwu Rookie

Fairly new to this, from your post it sounds like you really know what your doing on the "what to eat" end.....can you give us all a list of what you eat each da/week...or some ideas???? Anyone else have any suggestions on eating what?????? Just trying to find something that agrees??? Thanks! d

WW340 Rookie

I rarely ever get glutened anymore. If I do it is from eating in an unfamiliar restaurant, which I totally try to avoid. I know which restaurants I can trust locally, and they know me. I cook everything fresh at home, and my family eats what I cook. They have their bread, crackers and cereal, but that is it. I take food with me to friend and family gatherings, so I don't have to worry about eating there.

mattathayde Apprentice

at home basically never (any issue i have seems to be from other stuff), at school (in my own apartment) i get sick more often but i am not sure if its really gluten or just stress and other sensitivities (i eat a lot of peppers and onions at school and i think i am going to try to lay off them when i go back). when i eat out, i have probably a 10% rate with it but i also have other stuff i think that causes me illness.

my symptoms are so unspecific its hard to tell (lower GI issues) and if i have eaten gluten more than once i get a little bit of brain fog and slight depression

ive been home for a month from school and the only time ive been glutened was after going to outback i think

-matt

chatycady Explorer
Fairly new to this, from your post it sounds like you really know what your doing on the "what to eat" end.....can you give us all a list of what you eat each da/week...or some ideas???? Anyone else have any suggestions on eating what?????? Just trying to find something that agrees??? Thanks! d

Here is what I eat. I haven't been glutened in a year or more.

eggs boiled, poached or scramble in butter - no milk.

all fresh or frozen fruit without sugar or syrup.

home made yogurt with honey.

pork steak, chops or roast

beef roast, steak or hamburger

chicken - be careful - chicken is tricky as it's injected with "stuff" (gluten?)

orange roughy - my favorite fish

shrimp

all fresh and frozen veggies, except potatos sweet and regular, and yams(too starchy)

fresh baked goodies made with almond flour only.

olives, pickles, carrots, celery, - satisfies me when I get the munchies.

Does that give you some ideas? It's all regular food and doesn't cost an arm and a leg, except the almond flour. It's not cheap.

I pretty much shop on the outside asiles of the grocery store. Produce, meat, dairy aisles is where I hang out! I do drink a diet 7-up once in awhile. The key to this gluten free diet is to stock up on food you can eat. If you have something handy you might not feel sorry for yourself and say "There is nothing here for me to eat!" Boo Hoo! It works for me.

Hope this is helpful. Remember it's only food! No big deal.

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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.