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

My Stupid Mistakes - Not Because The Gluten Was "hidden" Because This Is Hard!

lucia

Recommended Posts

lucia Enthusiast
lucia
Posted

I've been working on cutting gluten out of my diet now for 5 weeks. The impact of a gluten-free diet is immediate. My GI symptoms clear up entirely after 5 days.

But, I keep accidentally eating food with gluten. I recognize my mistakes as soon as I realize the stomach cramps and pain are back. In retrospect, the mistakes seem so stupid, but I'm still making them. Partly, this is a result of "brain fog". But, I still feel stupid and frustrated.

List of my mistakes:

1. Cafix: a coffee substitute made of barley. I was a week into the new diet. I pretty much stopped eating much of anything during that week. I didn't realize that barley, as well as wheat, had gluten. The worst part is that I turned

2. Ice cream. I read that ice cream was okay. After being glutened, I searched online and found that not all ice cream brands are okay.

3. A superfoods bottled juice drink. It contained wheat grass and barley grass. It turns out that these can be contaminated with wheat and barley seeds. Especially frustrating since the drink was all-organic, super-healthy, blah, blah, blah.

4. Hot chocolate from a cafe. I make this at home, and my hot chocolate doesn't have gluten. I left my keys in my apartment last night and had to wait for my husband to come home. I waited in a cafe down the block. I had to order something. They must have used a mix. Next time, I guess my drink of choice will have to be herbal tea.

Argh!

It's hard to imagine this as a thing of the past. I can't believe that a single mistake like this will keep me on the couch for 5 days at a time.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Hey, I'm sorry you keep getting glutened - as you found out, it is very easy to do. Word of caution: I have even found gluten in herbal tea :blink: It was one of the Celestial Seasonings teas. Now doesn't that just make your day? :lol:

Midwest Newbie
Midwest
Posted

Yeah, I was bitten by the ice cream too. I checked the ingredients and it looked safe. Later I realized I was glutined and that was the only food I knew was different from my routine. I checked the labeling again and in small print at the bottom was the disclaimer about cross contamination possibilities with wheat. Lesson learned on reading *everything* on the packaging.

For me, I got hit with some hidden gluten in prescription-strength codeine cough syrup. I checked the Walgreens bag info (the bottle itself is just that generic brown, plastic bottle) and there was no ingredient list. So I figured it must be safe as it couldn't possibly have G in it. The next morning I was sluggish and the crappy feeling is still hanging in there... I suppose they used it to thicken the syrup which I heard does happen.

(Which flavor of tea? I thought all C.S. herbals were gluten-free! Scary...)

mushroom Proficient
mushroom
Posted

(Which flavor of tea? I thought all C.S. herbals were gluten-free! Scary...)

I'm sorry, I can recall the flavor now or I would have mentioned it. It was just a heads up to read ALL labels.

jackay Enthusiast
jackay
Posted

I'm sorry, I can recall the flavor now or I would have mentioned it. It was just a heads up to read ALL labels.

Celestial Seasonings lists on their website and on the packaging if the tea is gluten free. The boxes have a star with a K in the middle and also say gluten free. My boxes are old so maybe the symbol has changed.

lucia Enthusiast
lucia
Posted
  • Author

Thanks for checking in about my message. It's depressing that I can't even count on herbal tea to be gluten free. I remember now that many teas have barley.

It sounds like you all are scrupulous about checking labels, checking brands, writing to manufacturers about products, talking to waitstaff at restaurants. I guess that's what it takes to stay healthy.

I've never been very good at advocating for myself. (I didn't grow up in a family or situation where that was encouraged.) Maybe a positive thing about this condition for me is that I'll be forced to learn how to do that.

Skylark Collaborator
Skylark
Posted

The diet takes a lot of research and practice. You will get better at it!

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

Celiac.com Sponsor (A8-M):


drloots Newbie
drloots
Posted

sorry to hear that. What I found to work is reading about what is safe and isn't in general then as your shopping read labels and keep track of what you can eat. Google is another great way to see what is gluten-free b4 you shop. If you have an iphone there is an app called is that gluten-free which has a bunch of everyday products. Cheers! Jason

Juliebove Rising Star
Juliebove
Posted

I learned the hard way to read every label, every time. And at a restaurant, never assume it is safe. Always ask. Daughter will only drink water now in a restaurant. She knows that is safe.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.