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

Am I Really Being Gluten-Free?


june27

Recommended Posts

june27 Apprentice

I have been gluten free for 5 months (starting with my celiac diagnosis). The first thing that I did was to clean out my kitchen (including replaced cutting boards, and plastic/wooden spoons with new ones, and getting rid of any food that either had gluten, or was unknown). I also went through all of my medicines, and cosmetic products.

For the first few months, I ate exclusively at home (or meals I had prepared at home) - so I think I have pretty good control of those meals. I have recently started to eat out occasionally (not more than once a week, unless I am away from home for the weekend, and even then I try to choose wisely). I do try to do my homework and choose the places that I eat at wisely, but I am not good about giving cross-contamination instructions to restaurant staff.

Unlike many people in this forum that suffered with digestive issues for a long time, I was diagnosed after going to a naturopathic doctor for allergies. I did have one 'issue' a couple of months into being gluten-free where I think I may have glutened myself. (I used a bottle topper on a soda that may not have been washed well after the previous use on a beer bottle - after 3 sips of soda on day 2 (day 1 had no issues), it went right through me and my stomach was off for 2 or 3 days. Nothing debilitating, but lots of belching and my stomach generally was just not happy. I am guessing that I glutened myself, but am not 100% sure)

My question is - how do I know if I am being good enough (relative to gluten-free) when I am eating something that I did not prepare myself? If I am not reacting, can I assume that I am not having CC issues?


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

If you were not having digestive symptoms prior to diagnosis, you may not have reactions. Perhaps you have/or will become more sensitive to gluten the longer it has been removed from your diet and will be able to identify when you accidentally ingest.

Were you diagnosed via bloodwork? If your tTG IgA was positive, repeating it could be helpful in monitoring for unwanted gluten.

Good Luck!

Adalaide Mentor

I react swiftly, violently, and in a way that screams "this restaurant staff is never to be trusted again!" It is horribly painful and I am quite lucky has only happened to me once away from home. At first I felt sorry for myself over this, I now consider myself lucky and feel bad for you and those like you who have little or no reaction who are left wondering.

Saying things like, "no croutons, don't put them on and be like right, she didn't want any and take them back off. That isn't safe for me. Just don't put them on. And try not to be a moron." is probably not a good explanation of how to do my salad. Frankly though, if that's how I feel that I need to speak to my waitress I just leave because she sure as heck won't understand CC. When I go out to eat, whenever possible I always try to be the one to choose where to go and usually choose the same few places that have been safe for me. When I can't pick where to go, if it is somewhere I know I can't eat safely I will simply bring my own food. I did this for my best friend's graduation and used it as an excuse to stop by my favorite gluten free bakery for a sandwich. Never be embarrassed by this. Never. If questioned simply look the server straight in the eye and say "multiple food allergies" and keep eating. Yes, it's a lie but they'll shut up fast so you can all enjoy your meal.

I can't tell you that yes, if you aren't seeing a reaction then you aren't having any CC problems. You may be one of the unfortunate few who will not know. But it's possible that the bloating you saw was a reaction and that you aren't having problems and are doing everything just right also. I don't eat out at "real" restaurants particularly frequently but I do happen to eat at Wendy's pretty often and they've never made me sick.

june27 Apprentice

I think I jinxed myself by posting this thread a few days ago...

I went out for dinner last night, to a place I have been before a few times. (I don't go out more than 3 or 4 times a month, so I wouldn't say that I have been any one place "a lot"). Anyway, I ordered off the gluten-free menu, but got steak tips instead of the salmon that I have gotten in the past. Tummy felt a little off after eating, but nothing terrible. Woke up at 4am with C, which quickly changed to D. When I got up at 7, had bloating/belching, and 5 hours later things are still not back to normal.

Here's my question -

I forgot to say no butter on the tips with mushrooms/onions/peppers that I ordered. I have given up dairy for the past 5 months as well as gluten. I have never noticed any issues with dairy or lactose in the past. I am curious if there is any way to distinguish based on my symptoms if I was glutened, or if it was just some dairy doing bad things. I did do a dairy 'challenge' 2-3 months ago, and ate hard cheese/yogurt for a week. I had no digestive issues, but my allergies were terrible, so decided to remain dairy free for longer.

Any thoughts?

GottaSki - I was diagnosed via bloodwork. I had read before that it sometimes takes a while for the gluten/antibodies to get out of your system, but maybe I will ask for the bloodwork again the next time I see my doc.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Nancy N Rosen
    Newest Member
    Nancy N Rosen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.