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Do You Ever Start To Think...


Natlay

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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!!


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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:

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    • Scott Adams
      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
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      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
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