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

Fragile

Guest Libbyk

By Guest Libbyk
in Coping with Celiac Disease

Recommended Posts

Guest Libbyk
Guest Libbyk
Posted

Hi all-

I got some sort of contamination (could it be bacon? fresh sliced at an upscale grocery?) yesterday, and never got nauseaus, just the inescapable (for me) reaction of the runs and exhaustion and being really emotional. Nothing is really wrong, I am just a little lonely (all loved ones far away for a couple of weeks) and SO TIRED.

I have been bursting into tears since last night, and when I tried to lift my spirits by going for a run, a walk was all I could manage. I just feel like sucha big, freakin BABY. I have been gluten-free for 5 months now, and on the whole, life is wonderful. But these setbacks are are much more difficult more me emotinally than physically.

Have you found any tricks for keeping your head on straight? All I have figured out so far is to lie low and hide until I don't feel crazy anymore. I could use some ideas on how not to become so damn useless for 1-3 days after getting something...

Lib

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

Not a lot... Mostly sticking to a routine, and hopefully, when your family returns, if they're understanding, they can help.

Donna F Enthusiast
Donna F
Posted

Don't get yourself down - everyone has their days! I know I've had mine!

This probably sounds wierd, but when I get down on myself about something, I find that if I do something for someone else, I fell better - maybe it's the shift from thinking about me to thinking about someone else? Not sure really, but I know it works for me.

And if you feel too lousy to get out and DO something for someone, go on-line and help someone here! Or call an old friend, or make something for someone you love while you're stuck at home anyway.

Hope you're having a better day today!

Smile! :D

donna

KAthyB Newbie
KAthyB
Posted

I definitely see a link between moodiness and anxiety in my celiac teen and potassium. She has had trouble maintaining electroltyes for years and just recently was diagnosed celiac. Along with moodiness she gets terrible leg pains. I am not sure if she has trouble absorbing the potassium because of the celiac disease but if I sneak her some exta OJ, cantalope or ohthe potassium rich foods her mood improves.

Can't hurt! Good luck!

Kathy

mannabbe Newbie
mannabbe
Posted

Libby,

I think that for many of us, the emotional toll of gluten ingestion is unavoidable. A woman doctor friend of mine told me that she considers gluten to behave as a "neurotoxin" for many of us. I've been gluten-free for 3 years, and if I have a bit of gluten accidently, I'll be on the verge of tears for 24 hours. The woman who sits next to me a work has celiac and she has the exact same experience.

It helps me to know that it's the gluten doing it - it's not my life or my job or my relationships. It's just the dumb gluten. I always drink lots of water on those days , and if it's a work day, I start out the day with caffeine - which seems to counter the dull headedness of gluten.

take care and know you aren't alone!

Laurie

kvogt Rookie
kvogt
Posted

After an accidental poisoning, I sometimes get really iritable like snapping at people or prone to rage at what are otherwise small annoyances. Gluten can seriously effect my nervous system.

dana-g Newbie
dana-g
Posted

On Thursday I accidently ingested gluten, and by Friday morning I had my typical reaction, which is the worst headache imaginable, which does not respond to migraine medicine, and violent vomiting every 15-30 minutes, even water, both of which last for 48 hours, like clockwork, very predictable. I did not get out of bed until Sunday, and felt like I had been run over by a rather large truck (probably a gluten containing bread truck) and I still feel pretty bad. I've been gluten-free for 6-1/2 months and every gluten accident is worse than the one before, but this I know: These episodes are only a reminder of how horrible my pre-Dx life used to be, of all the things I missed out on in my kids' lives, of the needless guilt I felt for "making" myself sick, on and on. Except for these occasional lapses, I am the healthiest person I know--full of vitality , strong and happy. And I will be damned if I will let this disease take anything more away from me--a gluten accident is just that, an accident! I just pretend I have the flu and move on. My happy life started the day I went gluten-free!

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

Celiac.com Sponsor (A8-M):


Guest LilKLJ
Guest LilKLJ
Posted

Hey all... I'm a 'new' diagnosee.... been learning to go gluten-free since April 1.

I knew about this board when I was going through all my testing ... and kind of scanned over it a few times... but have recently been changing jobs and getting ready to go back to school in the fall (yikes, it's been almost 5 years!)... so I kind of forgot about it...

I was having a bad morning... (well, last 48 hours or so) and somehow found my way back here...

And I just wanted to say, THANK YOU!!!

To each and every one of you who posts on here... I'm a member of a local support group, but haven't found as much emotional connection to any of them as I have to all of you on here...

Sometimes, it feels like I'm reading something I would have written myself... and right now would probably be a messy bundle of tears, if I wasn't sitting at work. ;)

I'm this strong, independent woman... who's overcome a lot in life... but for some reason... this disease is really hard for me to cope with... I know it could be a lot worse... and I know it's a 'simple' treatment plan... which is what I tell everyone (including my BF who's been a dream through all of this)... when I put on my brave face and my best smile and tell everyone it's not that bad...

But for the most part... when I'm alone and don't have to pretend anymore... I'm scared. And I have the most uncontrollable moodiness... and I'm an emotional wreck.... I just feel so 'not me'. :(

But it's good to know, that I'm not alone.

Guest Libbyk
Guest Libbyk
Posted

thanks for all of your thoughtfull responses. Lil klj, you wrote out my mind. I as well like to consider my self active, robust and energetic, but when I get sideswiped, it all goes to s@#$!@#t.

I don't mind being celiac, feeling crummy was just part of life, so knowing how to change that was nothing but positive. BUT, I get really resentful of these setbacks, because I am trying so hard. I feel like, if I am doing everything right, shouldn;t I feel as great as I want to? All the time? forever?

Lib

Guest NitaB
Guest NitaB
Posted

Lib and everyone!

I certainly feel for you, and understand a bit of what you're going through. It is so hard to understand, when we are trying to be gluten-free, and something catches us off guard! I'm so in the learning process still, so know I'll make more mistakes.

My biggest problem is family gatherings. They know and seem to understand, and try to help with food products for me. But, it seems as there is a barbecue, meal out, picnic, or other all day activity every weekend, and is posing more challenges than I am good at yet. I know it's because it's summer, and everyone wants to get together, but is so hard for me.

I end up either eating something cross contaminated, or maybe even with dairy, that I'm yet unsure of. I haven't gotten sick, but I end up so tired for a couple of days after. Maybe I'm lucky I'm not so sick, like some of you, but no one understands how tired and down feeling I am. After father's day breakfast out today, I was so tired I wanted to nap at 10:30! I dozed a bit, then took a 1 1/2 hour nap in the afternoon. I would've slept longer, but set an alarm!

I'm beginning to think I'm nearly asymptomatic, as only got very sick after some stress at work. Anyone have any ideas about this??? I finally go to a dietician on Tues. I sure hope she can help me a lot!

Anyone else have much help with a dietician?

gf4life Enthusiast
gf4life
Posted

I can totally relate to the mood changes during a gluten accident. I got some gluten accidently during my sons birthday dinner on the 10th. He chose the restaurant from our list of "safe" choices, and I tried something that should have been gluten-free (at least by ingredients) and the waiter seems very confident that my meal would be safe. I figured it must have gotten contaminated somewhere in the kitchen, and ended up sick for the whole weekend. It was awful, since I am an absolute grouch when I get contaminated. I feel awful and end up making everyone else miserable by yelling and complaining all the time. I can't believe I used to feel like that all the time! How did my family ever put up with me?

I had to take off a few days from being here online, since I tend to be a little incoherant and make mistakes when trying to do my moderator duties. I am still dealing with the left over DH rash and the occasional sudden bathroom stops, but my head is starting to clear and the fatigue is starting to let up a little bit. The worst part about it was that I had to continue my life as if nothing had happened, since I had responsibilities and also an extra child for the week. I just tried to pare my daily activities down to the minimum and only do the fun activities I had promised the kids. They ended up running wild around the house while I layed on the bed or couch and the house ended up very messy! I am still not caught up on the laundry or housecleaning. :rolleyes:

I hope the rest of you are feeling better.

God bless,

Mariann

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748
    Sally Garber
    Newest Member
    Sally Garber
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.