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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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    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
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    • Wheatwacked
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