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

Do You Ever Start To Think...

Natlay

By Natlay
in Coping with Celiac Disease

Recommended Posts

Lymetoo Contributor
Lymetoo
Posted
never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

It was severe pain that finally made me search the internet to see what was wrong. Now I remember several other occasions over the years where I was in so much pain I just laid on the bathroom floor between spells with the potty. Sometimes I had diarrhea, sometimes couldn't pass gas to save my life! That was worse than anything else!!

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

Celiac.com Sponsor (A8-M):


Guest ~jules~
Guest ~jules~
Posted
never, not with the stomach pain I get..I wish I could die its so bad

I don't think other celiacs get severe pain like i do, at least I don't see much talk about it

One of my symptoms was horrible stomach cramps. Sometimes so bad I felt like I was locked up in pain, and that I might pass out. Were yours like that too?

elonwy Enthusiast
elonwy
Posted

Ah the pain. Maybe we talk about it less because we block it out?

Severe stabbing, wrenching, gut twisting, burning pain. Pain with cold sweats that have left me so incapaciatated I've spent days and nights lying in bed, there is always one strange position, usually on my side, that feels slightly better. Pain so bad I would lie there and cry, not sob, cause that would hurt to bad, but just leak tears for hours, and stare at the wall cause the pain was so bad I couldn't even concentrate on TV.

Pain so bad I would take drugs to make me sleep just so I didn't have to be awake.Fun bit is, if I eat an egg, I get the same thing.

Yeah, don't really miss that pain at all.

If celiac doesn't cause it, why is it gone?

Elonwy

ebrbetty Rising Star
ebrbetty
Posted
Ah the pain. Maybe we talk about it less because we block it out?

Severe stabbing, wrenching, gut twisting, burning pain. Pain with cold sweats that have left me so incapaciatated I've spent days and nights lying in bed, there is always one strange position, usually on my side, that feels slightly better. Pain so bad I would lie there and cry, not sob, cause that would hurt to bad, but just leak tears for hours, and stare at the wall cause the pain was so bad I couldn't even concentrate on TV.

Pain so bad I would take drugs to make me sleep just so I didn't have to be awake.Fun bit is, if I eat an egg, I get the same thing.

Yeah, don't really miss that pain at all.

If celiac doesn't cause it, why is it gone?

Elonwy

thats it, thats exactly how I was for over 2 years!!!!! still have pain most days, but no where near as bad and the meds for slow gastric empting are helping that..Dr still wants me to eat a HIGH gluten diet for 4-6 weeks :o when I said I can't take the pain he rolled his eyes, and said you just don't seem to understand gluten and celiac disease will not do that and everyone else with the pain was misdiagnosed!!

I do wish there were more talks about the pain, even most celiac disease info leaves that part out!

mellajane Explorer
mellajane
Posted

Its so funny to read everyones story and realize it hits so close to home...I am 30 years old and have been sick since 7. All in our heads I dont think soooo...I am a very happy person overall I always see a better side to situations and I dont worry alot. Point behind that we know the first things Dr.s push is anxiety , depression and our favorite IBS. I never have yet met someone who gets as sick as I do.It just wasnt normal for a child to always be sick. It was always just a virus hmmmmm. Brother and sister never seemed to catch the virus.I always knew it was something more. I think when you ask yourself is it in my head, you should know right away its not. Its like intuision you just know. My final straw with Dr.s was the last G.I Dr. ;I had told him I was gluten free for a month and feeling great. He did all the necessay test. Guess what negative... That will happen when not eating wheat and gluten. ( Duh!) So and I qoute this Dr. "I think at this point you should see a phsychoanalysis Dr. "(huh).Its funny there were times when momma and daddy had to put me in check for almost throwing those funny little bed pans at the uninformed Dr.s that thought I was belimic or anorexic.Its funny that G.I. Dr. put on my diagnosis sheet anerexoria... HAHAHAAH Stupid! Stupid!

My boyfriend and best friend of 7 years has been at the bootom of this disease with me. I automatically asked him.... Babe are we at this point do you think its in my head. Automatic response.... NO lets get that second opionion now!

I am a true beleiver if it works stick to it! This wheat and gluten allergy has changed my life tramaticlly.Its nice to live a normal life. Good luck!

that this is all in your head? I had been eating gluten free/dairy free for a few months and felt sooo much better...then it started again so I got tested for corn and soy intolerance too. I felt a lot better after taking these foods out but then the test came back negative. I started this week eating only meat, fruit, and vegetables and finally feel good again. But...I miss all my favorite foods ;) I find myself constantly daydreaming about my favorite cookies and chips and then I tell myself that the blood test was negative so I can have these things again. Then I remember how much better I feel without them... :P

(Apparently I go crazy when deprived of cookies :D , I had been eating 3 or 4 boxes of enjoy life cookies in one sitting)

jennyj Collaborator
jennyj
Posted

After years and years of problems I was dx in March. After at least 15 colonoscopy, numerous endoscopies, swallowing a camera. barium whatevers and so many CT scans I should glow, a blood test is what finally dx me. After years of getting sick and trying to figure out what was wrong it all makes sense. I get so aggravated when I think of all the wasted time. All the people who would just sigh and roll their eyes when I would say I'll be right back I need to use the restroom whenever we were out anywhere. It seems so petty but I would love to find my high school gym teacher who would give me such a hard time because, "Jenny you always have a stomach ache", I would ask to sit out so I wouldn't pass out and let her know I did have a stomach ache and a reason. (Gym after lunch) The dumb doctor who after removing my gallbladder told me"Eat what want, if make sick, no more eat." DUH. Thanks for letting me ramble. :blink:

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
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • 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.