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

Recommended Posts

Lymetoo Contributor
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~
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

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
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

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

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.

  • 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. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748

    Kim RS
    Newest Member
    Kim RS
    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)

  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.