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. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    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

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • 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.