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
      131,955
    • Most Online (within 30 mins)
      7,748
    AnnaLousGFBakery
    Newest Member
    AnnaLousGFBakery
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.