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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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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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