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

I Know, I'm Just Whining


lc1333

Recommended Posts

lc1333 Apprentice

ugh...before i figured out that gluten is my nemesis i ate out all the time.  now, there's nowhere that has fast food that i can eat...i ate at subway yesterday morning, I've always had good luck with them...they get out the meat from the bottom of the stack, same with the cheese and all that...yesterday i went to subway for breakfast.  last night by 10 pm the cramping started...then the hot flashes and the sweating...the cramps were so bad i thought i was going to have to go to the hospital...worst episode in over 2 years...then i was stuck in the bathroom for 2 hours dying...needless to say, there was nothing left in my system - anywhere!  it was so bad...and i can't think of anything i ate that wasn't gluten-free other than if the subway was cross-contaminated...i'm so bummed...i like eating out, and today, i'm still queasy, my gut is still grumbly, had to leave work early...

 

i know i'm whining, but damn i hate this!  i want to go back to eating whatever the hell i wanted and not knowing what was causing all of my symptoms...i'm pouting...

 

thanks for listening


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

It sucks. It really does suck. And most of us totally get that. If you have a Wendy's in your area they're a much safer bet. None of us should ever even consider eating anything from a Subway ever because of risk of CC. It just isn't safe. I worked at one once, and when you get to the bottom of the meat and cheese containers they always have crumbs. Always. If you google Wendy's on the forum though you'll find lots of suggestions about how to order there safely. :) I've had success there, and since it's summer you'll be able to get Frostys too. Not sure where you are, but In N Out is also a great place to go. I've never had issues there. While we have to gently guide people at Wendy's, we can just tell the person at In N Out that it's a wheat allergy (I know it isn't but they list it as an "allergy burger" on the slip) and bam! just like that you get a safe meal. Maybe they're the reason I'm still fat and not my baking habit. :ph34r::lol:

 

When this was all new I cried in grocery stores in the bakery aisle. I cried in parking lots in fast food places. I'd cry when my husband ate junk no one should be eating anyway that I couldn't have. It does get better. Today I stopped in a new gelato restaurant (seriously, 5 blocks away from my house... how cool is that!!!) to talk to them about what I could eat there. I didn't intend to get anything when I walked in because I'm sick as a dog right now but my husband decided to get a watermelon gelato that was not gluten free. Other than the smallest pang of jealousy that it was HOTHOTHOT and he had an icy treat that I couldn't even taste, it didn't bother me. And, the owner has a bunch of food allergies and was super helpful and they'll email me back with what I can eat soon. You'll find, that while it may not be fast food, you'll find lots of small business owners like this who are very accommodating and just want to help make sure that we can all have a safe experience. So when you're ready to have a sit down meal, take the time to talk to some of your local places you used to love and see if they can work for you.

luvs2eat Collaborator

I understand your pain and frustration! Last night my daughter made the most delicious beef stew and the whole time I was enjoying it, all I could think of was that there were no good old Bisquick dumplings floating in it (tried the gluten-free Bisquick... it wasn't good). Been gluten-free for more than 10 years and every once in a while I get so sad about food memories I'll never have again. I've cried in stores too... but in the very end it's all good. Wallowing is allowed!!

lc1333 Apprentice

Thanks, y'all,

 

I'm feeling better today.  It's really hard to completely change your lifestyle around food, I know that everyone here has had to do just that.  It's frustrating how pivotal food is in our lives...and demoralizing when we can't participate in our lives the way we used to.  I wish I was raised and used to the whole "just don't eat anything processed" lifestyle, but I wasn't, I was raised in a McDonald's practically, so this shift, while good for me, is really hard.

 

Thanks for your sympathy, it helps...

 

Linda

NatureChick Rookie

I personally love the threads that start off with someone venting because we can all relate.

Archived

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

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

    • Total Members
      133,194
    • Most Online (within 30 mins)
      7,748

    Eliana123
    Newest Member
    Eliana123
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.