Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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
      131,175
    • Most Online (within 30 mins)
      7,748

    Chels22
    Newest Member
    Chels22
    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

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...