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

Has Anyone Ever Been Glutened But Had No Idea How?


angel42

Recommended Posts

angel42 Enthusiast

Hi,

I am hoping someone can help. I am generally extremely careful about what I eat. I am probably a little overly cautious about being glutened. I never go out to eat anymore unless it's a gluten free restaurant or a restaurant with a gluten free menu. (I have had too many bad experiences with too many clueless waiters) I either prepare my own food or get lunch at whole foods.

In spite of all of this I seem to be getting sick again. I have not changed my diet at all or eaten anything new but it's unmistakeable, the brain fog, running to the bathroom every ten minutes etc. I have been so careful it really doesn't feel fair. It's not like I went out and had a big plate of pasta. I really don't know what to do. I have such a limited diet to begin with I really don't want to restrict it any more.

Has this happened to anyone? Can anyone help?


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

When you say that you get lunch at Whole Foods, I'm assuming you get salads from the food bar? There is always the possibility of cross-contamination or even though they list ingredients, is it possible that one of the ingredients has hidden gluten in it? Maybe it didn't before but now it does? I used to get salads there but always feel like I'm taking a risk. They use good ingredients but don't promise that they're free of allergens. Also I've noticed that some of the salads are made from leftover veggies from the glass case the day before, like roasted sqashes. This would add to the possibility of cross-contamination because those ingredients are next to breaded items.

angel42 Enthusiast
When you say that you get lunch at Whole Foods, I'm assuming you get salads from the food bar? There is always the possibility of cross-contamination or even though they list ingredients, is it possible that one of the ingredients has hidden gluten in it? Maybe it didn't before but now it does? I used to get salads there but always feel like I'm taking a risk. They use good ingredients but don't promise that they're free of allergens. Also I've noticed that some of the salads are made from leftover veggies from the glass case the day before, like roasted sqashes. This would add to the possibility of cross-contamination because those ingredients are next to breaded items.

I guess it could be cross contamination and I could stop buying lunch entirely and always bring my lunch. I am already at the point where I virtually never go out to eat I don't want to get to the point where I never eat food prepared by anyone else for fear of cross contamination. I honestly don't know what to do.

TinkerbellSwt Collaborator

It has happened to me a few times. I have to say one of the better places always was for me Whole Foods, but you cant be totally sure of no cross contaimination there. They do list all ingredients and hide no wheat or any type of gluten, but you cant trust people. I would go to bringing my own lunch for a while and see if you feel better.

If not, could something else be bothering you? Maybe dairy?? I have heard it happens. It is not uncommon for a celiac to grow a sensitivity to dairy. I am sure someone else with more info on that can chime in on that.

You can also keep a food diary, to help you look back at what your day consisted of. I realized after a while! that I was getting cc from my computer keyboard! Innocently my b/f was using the keyboard and eating Nacho cheese Doritos (yes he loves the only ones we cant have!)

Those are the only suggestions I can come up with, I know others will help.

I hope you feel better soon!!

Stephanie

alamaz Collaborator

Just in my experience, I can't eat at the Whole Foods hot bar or salad bar. Everytime I've been majorally glutened it was coincidentally right after eating there. It might depend on which Whole Foods you go to also.......

Amy

missy'smom Collaborator

" They use good ingredients but don't promise that they're free of allergens. "

I should add the words "that I'm aware of" to the above statement. I don't know what their policy is on deli food.

Maybe just re-evaluate the choices your making with reguards to WF salads. Maybe go in on a day when you're not buying lunch and not feeling emotional or frustrated.

Sorry you're not feeing well. It's frustating and overwhelming sometimes. The lack of convenience is one of the hardest things for me on this diet. If one wants more convienience it is possible if one eats the same thing all the time but to have both convenience and variety I something I've yet to figure out. I need a bigger freezer!

I buy those white corning ware freezer to oven individual dishes with lids and fill when I have leftovers from dinner(like meatloaf, mashed pot.and veg. or mixed variety rices pilaf with some kind of protein) and freeze and take to work when I was working or now that I'm home eat at home. I bought small plastic disposable containers from the restaurant supply store to put my salad dressing in and put them in a larger tupperware container and added the bagged mixed salad greens. Minimal effort.

Hope you are feeling better soon.

happygirl Collaborator

I would try a two-tiered approach:

1. Stop eating out entirely. (I know, no fun). Only eat food prepared by you. See if this "solves" the problem. (I no longer eat out at all, as the only times I were being glutened were then....I finally had to put my foot down and stop it, because I have severe reactions.)

2. If Step 1 does not eliminate your symptoms, then I would recommend trying something else. Either eliminating other foods, or a doctor's appointment to rule in/out other conditions. Also, have your full Celiac panel run at this time, to see if gluten is still part of the problem.

Best of luck, and I sincerely hope that you find answers to your mystery!!!

Laura


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

For a while last summer I was getting symptoms of glutening and couldn't figure out where they were coming from. I soon realized that peanuts give me the same symptoms. I didn't figure this out until 10 months of being gluten-free and 6 months after feeling completely better from going gluten-free. I'd consider other foods. Has your diet changed *at all* in the past few months? The reason why the peanut thing showed up for me when it did was because I moved out of my parents house and started eating peanut butter sandwiches for lunch. I rarely at PB at my parents'.

oceangirl Collaborator
For a while last summer I was getting symptoms of glutening and couldn't figure out where they were coming from. I soon realized that peanuts give me the same symptoms. I didn't figure this out until 10 months of being gluten-free and 6 months after feeling completely better from going gluten-free. I'd consider other foods. Has your diet changed *at all* in the past few months? The reason why the peanut thing showed up for me when it did was because I moved out of my parents house and started eating peanut butter sandwiches for lunch. I rarely at PB at my parents'.

Hi.

I'm sorry you're not feeling well and hope you get to the bottom of it soon. I get glutened OFTEN and OFTEN have no idea where the heck it came from! I NEVER eat out, make almost every scrap of my own food and bring my own meal to every event I go to. I concur with others who recommend making ALL your own food for a bit. If that doesn't work, you should try elimination diet to discern what other foods are bothering you. It is a long and often discouraging process- I am in the middle of going back to this now after 9 relatively positive months. If you are extremely sensitive this may take some time. My heart goes out to you as I know the feeling of wanting to throw your hands up. But, after taking every processed and questionable food out of my diet I have just had a fairly decent three days and nights.

Best of luck!

lisa

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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

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

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748

    JAGAPG
    Newest Member
    JAGAPG
    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

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.