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
celiacinseattle
Posted

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
mushroom
Posted

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
FMcGee
Posted

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
Jestgar
Posted

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
mamaw
Posted

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
Amyleigh0007
Posted

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
VioletBlue
Posted

: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
GF avenger
Posted

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
mushroom
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.