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.

  • 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
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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

    • 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.