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

Had An Awakening Today

confused

By confused
in Coping with Celiac Disease

Recommended Posts

confused Community Regular
confused
Posted

Well earlier i was sitting in the Er waiting room and just looking at everyone that was there, some had strokes, one guy had an brain anyerisium and just a whole bunch of other ailments in there.

The last few days i was starting to feel sorry for myself wtih all my food restrictions and asked myself why me, Why am i going threw all of this. Even today when my parents were here, my mom was having an milkshake and i was crying cause i cant ever have one again. Well not one with real ice cream.

But now i sit here and think, i have life so much better then all of those people in the Er tonight. It was like a sign telling me how lucky i was for having things i can control with diet

Whenever i start to feel sorry for myself im going to think about this day at the Er and i know how lucky i am. Im not sure exactly were i was going with this, but just wanted to share.

paula

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hi Paula,

I had a moment like that today myself. I was down--a combination of the flu and just one of those days.

My husband told me that today, one of his guys at work got a call--the man's wife was found still in bed this afternoon by some family members--she was dead. She's not that much older than I am.

We haven't heard anything further yet--this just happened this afternoon. After hearing about something like this, my little illness, in the great scheme of things, isn't all that important.

I'm grateful to be here, safe at home with my family.

BTW--what are you doing in the ER? Everything ok?

missy'smom Collaborator
missy'smom
Posted

I understand where you're coming from. I can't have dairy either. It's hard. We have a potluck coming up at church this weekend and it's so hard to find something that's Gluten-free Casein-free to bring. I have some good recipies but they're the same things that I eat all the time. I end up eating the same old food and not really socializing and spend most of my time running the kitchen. I am there to serve but at these times I can't help feeling the way I do. Anyway, when I'm feeling like this I remind myself where I was at a year ago and have to be greatful that I'm able to be busy enough to be tired, for the most part, from that and not from gluten and celiac disease.

confused Community Regular
confused
Posted
  • Author
Hi Paula,

I had a moment like that today myself. I was down--a combination of the flu and just one of those days.

My husband told me that today, one of his guys at work got a call--the man's wife was found still in bed this afternoon by some family members--she was dead. She's not that much older than I am.

We haven't heard anything further yet--this just happened this afternoon. After hearing about something like this, my little illness, in the great scheme of things, isn't all that important.

I'm grateful to be here, safe at home with my family.

BTW--what are you doing in the ER? Everything ok?

Omg how scary patti, i feel so bad for the husband. Do they know if she had been sick or anything.

I had the flu last week and i think maybe that is what started the feeling sorry for myself.

Opps i never said why i was there. Well my 3 yr old decided to cut part of her finger off with the dog food can. She was bleeding everywhere and i freaked and we rushed her to the Er. Luckily all they had to do was glue it but it took 2 hours with all the emergencies.

But on the good note, last year when my kids would get hurt i would never take them, hubby would always take them, this is like the first time i have been well enough to be be there with one of the kids and im thankful for that.

paula

jerseyangel Proficient
jerseyangel
Posted

Paula,

I'm glad your daughter is ok. It can be so scary when a little one is bleeding and you can't tell how serious it is. I know that feeling of being grateful just to be able to be there with her--it's times like this that we can take a step back and see that we really have made some progress.

Some days, of course, it doesn't seem quite fast enough :D

Take care :)

blueeyedmanda Community Regular
blueeyedmanda
Posted

Paula,

Dont worry I have been there soo many times. A lot of times it has nothing to do with the celiac and more of the work things going on or when things have not been so well in our marriage. The one thing that helps me is thinking about how worse off I can be. Hope you feel better soon.

Hope your daughters finger is better too.

Amanda

Nina12488 Rookie
Nina12488
Posted

I know exactly what you mean, I had a friend who died two months ago from cancer. But she was one of the most beauitful, inspiring people you would ever meet. She would be in the hospital undergoing chemo sending me care packages of gluten free food! And I would call her and be like thank you so much but really focus on yourself! Let me send you care packages! And she would always protest and start to tell me the new gluten free thing she found.. so in the grand scheme of things, having to pass on cookies isn't so bad. :)

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted
  • Author
Paula,

I'm glad your daughter is ok. It can be so scary when a little one is bleeding and you can't tell how serious it is. I know that feeling of being grateful just to be able to be there with her--it's times like this that we can take a step back and see that we really have made some progress.

Some days, of course, it doesn't seem quite fast enough :D

Take care :)

Thank you, i was so scared just seeing all the blood that was coming out of her hand. and of course she is as calm as can be just looking at me, im like we have to go to the doctor and she is like no i want to go to the grocery store lol. Her pain tolerance is so much like mine i guess. Everyone at the Er was so amazed at her and they callled her a little pumpkin lol.

Nope they dont seem fast enough, but i guess we have to look at the progress we have made. Or think how bad off we would be if we still didnt know we had celiac. Then we could be some of those people in the Er that i seen.

paula

confused Community Regular
confused
Posted
  • Author
I know exactly what you mean, I had a friend who died two months ago from cancer. But she was one of the most beauitful, inspiring people you would ever meet. She would be in the hospital undergoing chemo sending me care packages of gluten free food! And I would call her and be like thank you so much but really focus on yourself! Let me send you care packages! And she would always protest and start to tell me the new gluten free thing she found.. so in the grand scheme of things, having to pass on cookies isn't so bad. :)

She sounds like an wonderful and caring person and you wre lucky to have her in your life. Im so sorry she passed away. Yep i guess giving up cookies is not an bad thing after all, at least we are still alive and getting better all the time.

paula.

confused Community Regular
confused
Posted
  • Author
I understand where you're coming from. I can't have dairy either. It's hard. We have a potluck coming up at church this weekend and it's so hard to find something that's Gluten-free Casein-free to bring. I have some good recipies but they're the same things that I eat all the time. I end up eating the same old food and not really socializing and spend most of my time running the kitchen. I am there to serve but at these times I can't help feeling the way I do. Anyway, when I'm feeling like this I remind myself where I was at a year ago and have to be greatful that I'm able to be busy enough to be tired, for the most part, from that and not from gluten and celiac disease.

Oh i know how you feel, when i had to serve lasagna a couple of weeks ago at a banguet, i was just standing there and looking at it, but thank goodness it was the frozen type that i dont like, so it wasnt as bas as it would have been if it was homemade lol.

My poor kids last night asked me if i was going to let them have real cake for their birthdays this year. One kid turns 8 and one 5 in a 4 day span and i told them of course as long as its not chocolate and im tempted to have some lol.

paula

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact 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.