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

Glutened... But No Idea How And When?


shimo

Recommended Posts

shimo Rookie

Hi there,

I guess I've been glutened because my symptoms have somewhat restarted lightly (D, few cramps and big time irritability).

I haven't had anything new, really. I have been extra careful with everything I eat.

The only things I have added to my diet are cookies from Schar, and also a few other things from them such as pasta (I used Glutano only until now and was feeling fine).

Any idea? I did not have anything not gluten free, seriously. Actually I do not have anything at home that is not gluten free. I got rid of everything. Plus I do not eat out at all. I only drink coffee outside.

My doctor also prescribed me a few vitamins and as he believes I might also have bacterial overgrowth, I'm taking pills to oxygenate the whole digestive system, digestive enzymes and a few others that I really do not know what they are for (i take 8 pills per meal total). Now I presume he knew what he was doing, most of those pills say they are fine for celiacs and those that have no information on that whatsoever say that they are free of allergens...

Can one of those pills be doing this?

What has been the most stupid anti-gluten reaction you have had? I heard we can get a reaction without even eating it, is this true? I just want to know what to avoid...

Thanks a lot!


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



Celiac.com Sponsor (A8-M):



wowzer Community Regular

It wouldn't hurt to check the medication and make sure that it is gluten free. The pharmisist can do it for you or you can check www.glutenfreedrugs.com

loco-ladi Contributor

I would check the pills yes, but also concider even if you only are drinking coffee outside home that still poses some risk, those little doughnut crumbs that everyone else left go everywhere. Also check shampoo, hand cream, lotions, toothpaste........ you may have done this before however someone may have changed their "recipe" I would concintrate on any "new" bottles you have opened recently.

FootballFanatic Contributor

I'm going to have to half-disagree with what wowzer said. Don't call your pharamacist, sure, some may go out of their way to call the manufacturer, but I called my pharmacist who said everything I was taking was gluten free, I have found out in the past week that 2 of those drugs are for sure not gluten free but only from calling the manufacturer.

I am about to make a posting about this in the "Post-Diagnosis" section....Since it's the weekend the pharmacutical companies and the doctor's offices are closed (so I have to wait for tomorrow to find an alternative for mine) I'm feeling crappy due to not taking it, but I know it's not safe so I'm calling first thing in the morning.

darlindeb25 Collaborator

I had a pharmicist tell me he had no idea what gluten free was and that he didn't have the time to bother finding out. His boss reprimanded him for that attitude and told me from now on I would never have trouble with him again, yet now, I do not trust him. I will never use that pharmacy again. I would never trust him to actually find out if the product was safe for me. I have a different pharmacy now and he is very good with me, always very helpful, yet I do always research the medicine myself first. It is our responsibility to take care of ourselves and if we truly want to be safe, then we need to check with the maker of the drug. It's sad, but sometimes people will tell you anything, just to get you to pay and leave, they just do not understand the seriousness of the situation. Even your doctor probably has no idea if the medicine he is giving you is safe, unless he is a celiac doctor.

wowzer Community Regular

I have had great luck with my pharmacist checking. I had her check 2 different ones. They told her they couldn't guarantee they weren't gluten free on one which I quit taking. The other was a cream that I was using for the itching and they said it wouldn't matter being a cream. The pharmacist checked further and did find out that it was safe to use.

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. - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    2. - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

    3. - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

    4. - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

    5. - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

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

    • Total Members
      133,091
    • Most Online (within 30 mins)
      7,748

    Condon
    Newest Member
    Condon
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
×
×
  • 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.