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

Feeling Frustrated Today...


spinsterwitch

Recommended Posts

spinsterwitch Rookie

I suppose it doesn't help that I have a cold.

I've been doing the gluten-free diet for about a month, and I am planning to convince my doctor to go forward with testing. The past couple of weeks, I've gotten glutened 3-4 times. Today, I realized that it had happened again.

I'm pretty sure that I know what it was (which is sad because I really like these particular California Rolls :( ), but feeling sick brings up another issue for me. I don't like to cook when I'm sick. But it's almost impossible, when I've just been glutened, to imagine how I would get food otherwise that might not be cross contaminated. I live alone, so the con of that is that there is no one to cook for me. (The pro is that I don't have to worry about that CC.)

How do people cope with this?

Also, when you are glutened, do you find that you react immediately? I know I haven't had anything with gluten today, so I'm assuming that it was food I ate last night, but I didn't feel sick until this afternoon. I know this may vary, but it would be reassuring to hear the variations.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

California rolls can contain artificial crab meat, which is not gluten free. Most soy sauces contain gluten, except LaChoy and Wheat Free Tamari.

Peoples reaction time varies widely, for almost immediate to several days. You just h ve to feel your way through it. Mine is about 24 hours.

GFqueen17 Contributor

yeah sushi is tricky...sometimes it has gluten, sometimes not. i used to love this one japanese restuarant but i kept getting sick whenever i ate their sushi...so i finally asked how it was made and apparently they used some sort of vinegar on the rice that had gluten...idk...but some foods are weird like that.

a good thing that you could make pretty easily when your sick is Thai Kitchen soup bowls...theyre kinda like gluten-free ramen...just put them in the microwave.

wschmucks Contributor

Hi there,

First thing-- you need to go to a Dr who will give you the blood panel test and the endoscopy. If you're Dr wont agree, go to a new Dr. THEN you will have to go back on eating Gluten for about 6 weeks to get a positive test (this part sucks...try to look at the good-- eat whatever ur favorite gluten food is, cause you'll never have it again). I think its really important to get diagnosed.

After I was diagnosed (it hasnt been long-- 2 months), I refuse to eat out, and most Celiacs eat out maybe once in a blue moon. I want to give my body the best opportunity to recover. If i do not personally make my food I will not eat it, cause you really don't know whats in it or what has touched it. Its SO easy to get glutened especially when you first start cause it's really every where. I continue to get glutened even though I only eat food i make, i keep finding it hidden or some sort of cross contamination, and eating out just cause more confusion (Sushi-- really!? see what i mean).

If you dont feel like cooking, then grab a bowl of Rice Chex cereal or some fruit etc. We all know how frustrating this is, thats why this board is as popular as it is. We are here to support each other because other people just dont understand. My advise would be to get diagnosed and then stick to whole food that you have been in complete control over during the cooking process. Good Luck and I hope you feel better soon!

spinsterwitch Rookie

Thanks, ya'll. This board is very helpful. I actually think that my sickness today might have been both the sushi from last night and the TJ Organic Mayo (which isn't on their gluten free list). If that's the case, I was feeling it like 10 minutes after I ate it.

I live in the Bay Area, so I feel a bit lucky. We have a great gluten-free bakery really close to my house and work. There's a pizzeria that makes a gluten-free crust (although I know that CC will probably be an issue there). And of course there's Whole Foods.

I can't imagine how people did this before the internet!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748

    Kimmber
    Newest Member
    Kimmber
    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

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. 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
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.