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

A Bad Day


celiacinseattle

Recommended Posts

celiacinseattle Rookie

So I was only diagnosed yesterday, though almost two weeks ago my doctor called and said the blood test was positive, and that it might be Celiac. So I've done my best to keep gluten free in the mean time, and figured four gluten-free days before the biopsy weren't going to affect much. I was right, the biopsy was still positive, though starting to feel better after laying off gluten had already told me what the test results would be.

Anyway, so only one day after the official diagnosis and I'm freaking out about it.

The hubby and I have made it a weekly tradition to get sushi on Saturdays.

So we had sushi for lunch today (with gluten-free soy sauce, naturally). I figured rice and fish wouldn't be an issue. I didn't think twice about the eel nigiri I've eaten so often, or it's dubious sauce. I wish I had, or had done more research on the internet beforehand, because my stomach is still wreaking havoc on me.

Oops. :(

So for dinner, I wanted to take it easy, just steak and mashed potatoes. "Where's the steak?" hubby asks, rummaging around in the fridge.

Turns out, I'd left it on the counter after grocery shopping yesterday. Along with the other meat (chicken and pork) we'd gotten from Whole Foods and the bagger had been so kind as to put all in a separate bag so as not to leak on our other groceries.

I got really upset, because between ruining lunch and spoiling all our meat, I feel like I just can't get anything right. I know I'm not going to instantly get everything right, but it's frustrating, especially when I manage to let the majority of our grocery bill go to waste. :(

Fortunately, I have a great hubby who went back to Whole Foods and got more steak while I made the potatoes, and he surprised me with gluten-free chocolate chip cookies to make me feel better. :)

Anyway, I'm just feeling a little down and depressed and frustrated by this whole thing, and needed a place to share. Thanks for listening.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

The first say is always the worst. It does get easier as time goes by. Just take a deep breath, relax, and figure out a plan of attack. Your instincts are right on, about shopping around the outer perimeter of the supermarket; most of the stuff there is naturally gluten free. It is best to stick there for a while, with forays in for rice and gluten free cereal, and, if necessary for you, non-dairy milk; also nuts. Apart from that that is all you have to do for the first week while you come to grips with the concept. Keep it simple at first until you learn about all the places that gluten can hide, and they are really uncountable :( But pretty soon you will become an expert.

Come back and ask as many questions as you want, and good luck on your guten free journey.

FMcGee Explorer

Welcome! I'm just a few weeks in myself, and still making mistakes, but learning. Sushi is also a staple in my household, so I've learned a couple lessons myself: imitation crab has gluten in it, as does miso soup (at least at the sushi places in my town - I know it's possible to find gluten-free miso soup). Tempura (which I never really eat, but my BF does) is sometimes made with rice flour, so it's worth asking.

Good luck! It gets easier, as everyone here will tell you. :)

Jestgar Rising Star

It's OK to stress out about this. It's a huge change, but you will get through it. You'll adopt new habits and new "always safe" foods, and it will just become a part of your life.

mamaw Community Regular

Hi

I just wanted to say I had days like yours way before celiac.....It happens & you may get glutened several times before it all becomes clear. Just don't beat yourslelf up over it!. Usually the dog eats our steaks before we get a chance to cook them!

It will get better but it all takes time, a game plan, & will power.......

It is a great learnng journey you are now embarking on. Take small steps , learn the basics & go from there. One step at a time that way you may not stumble & get discouraged...

blessings

mamaw

Amyleigh0007 Enthusiast

It does get much easier over time. You will become a pro at it and pretty soon you will be giving other "newbies" advice! I remember the first time I went grocery shopping after my son's diagnosis. I stood in the middle of Walmart with tears streaming down my cheeks. I had no idea what I was going to feed my poor child! Now I am in and out of the store so fast!

VioletBlue Contributor

:lol: I'm well aquainted with the "It was there a mininute ago??? DAMN DOG!" scenario. It's a wonder she doesn't think her name is damn dog.

It does get easier, but I won't kid you, the first six months or so are the worst. I would suggest just concentrating on getting the food thing down for now. Don't worry about utentils bowls etc, just learn what's gluten free and what's not. Take reading glasses with you if you have to and read the labels on everything. Doing a search here can be a big help too. The odds are good if it's a product you have a question about, someone here has already asked it and gotten an answer. There's a wealth of knowledge here.

And hey, brain fog is a part of the whole gluten experience. THAT'S what you blame leaving the meat on! You're not responsible, the gluten made you do it :P

Hi

I just wanted to say I had days like yours way before celiac.....It happens & you may get glutened several times before it all becomes clear. Just don't beat yourslelf up over it!. Usually the dog eats our steaks before we get a chance to cook them!

It will get better but it all takes time, a game plan, & will power.......

It is a great learnng journey you are now embarking on. Take small steps , learn the basics & go from there. One step at a time that way you may not stumble & get discouraged...

blessings

mamaw


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



Celiac.com Sponsor (A8-M):



GF avenger Apprentice

It is really hard to wrap your head around the idea that you'll not ever have a food that so common, again! And the healing process may take longer than you like, but you WILL notice positive changes, almost daily. I'm about 9 months along, and I feel so much better... well worth the aggravation of learning about hidden sources of gluten, finding substitutes, watching other people eat...

Incidentally, the sauce used in spicy tuna may also be a problem, as can the wasabi if it comes from a tube. You've already figured out the unagi sauce issue. You might also be leery of the miso soup. Aside from all that (!!), sushi is a great option.

Keep your chin up, and do try to keep a sense of humor. Sooner or later, your sense that the whole world is made of wheat will cede to the fact that nearly the whole world is gluten intolerant!

mushroom Proficient
Sooner or later, your sense that the whole world is made of wheat will cede to the fact that nearly the whole world is gluten intolerant!

Oh, that would be sweet revenge, if the rest of the world had to scrounge around for something that contains gluten :lol: :lol: because they needed their "fix"!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.