dani nero

IBS can cause pain even when you're not having bowel movements. Some people get IBS because acids make their way into their large intestines which irritates them, and the intestines can hurt throughout the day and cause all types of pain. Buscopan will stop the intestines from being irritated and manage the pain considerably. If the pain stops after taking buscopan then it really could be IBS. 

It would be a good idea to find out because most docs won't do anything for you if it's IBS.. and if it turns out to be something else that isn't being addressed then it might be a problem. 

Were you diagnosed with celiac even though you were already gluten-free?

I had a non-functioning gallbladder removed.  I NEVER had any problems near my gallbladder.  Pain always presented itself in my lower abdomen.  Docs always checked my uterus/ovaries which were fine.  Typically had diarrhea or constipation.  Sometimes passed out, sometimes threw up.  Saw five gastros too.  A surgeon finally ordered a HIDA scan which showed functionality as I never had stones.   So, don't rule it out.  I suffered for 20 years with it. 

I'm glad you had it figured out. Thanks for sharing the experience, I'll make sure I ask the doc to look into all possibilities. Thanks

It doesn't matter how healthy you eat. If you're celiac, your body isn't absorbing the nutrients you need, or at least enough of them.

Before finding out about celiac, I woke up every morning feeling like I was a zombie who got hit by a bus the previous night, so I decided to eliminate any junk food and processed snacks from my diet in order to have more energy. Instead of feeling better, I felt worse, and worse. 

What's wrong with your mom?  All she has for you to eat are apples?  I'm the mom of a 20 year old boy and I can't imagine not trying to help him with his health issues and making sure he has good, safe food to eat.

 

But...you are 20, so I guess you could offer to do the grocery shopping and cooking until you go back to school?  I think your mom should fund the grocery shopping trip.  You don't have to buy expensive "gluten-free" products.  Get chicken and beans and cheese (if you eat that), hamburgers (yours without the bun), eggs, ice cream without cookies in it, etc.

 

 Can you get your mom to read on here?  Tell her I don't understand how she has a child diagnosed with a very real disease and she won't help her child.

 

Maybe she will read this?

Open Original Shared Link

Mothers usually come around once they've seen how serious we are about the matter. They are very sceptical in the beginning because the condition seems  unreal to them. I wish there was an effective way of educating people without having to go through the same conversation with everyone and sounding like a broken record.. and that doesn't require convincing them to go read about it.

Your cravings might be a sign that  you need more nutrition? There is an introductory 101 thread in the very top of this board by IrishHeart. It is very good reading. Lots of information about our needs and the learning curve we go through while healing.

Welcome to the forum, nice to meet you :-)

Thanks Pegleg, I really appreciate your input on this and do really hope it is my stomach being grumpy and nothing more.. although that would still mean that this pain which I've been having for over a year will still occur every time my gut feels like protesting :-( 

The first time I got this pain was a day after my birthday. I had eaten chocolate oat cupcakes to "celebrate" the occasion after not eating anything processed for months. The pain was so intense I was about to give up and go to the hospital. That first time was the only time when the pain was severe.. every single occurrence after was much milder.

I didn't like anything I read about Endo (can't remember the full name) or any other pelvis-located conditions. I won't jump to conclusions until my next doctor visit :-)

My immediate family is trying, and asking me more questions on what I can eat and how to prepare when I come over. My outside family, not so much but I chose to distance myself from them on food occasions. I'm definitely learning who my friends are! Not that I need to have social occasions around food and have absolutely no problem preparing my own, but I've been excluded from non-food functions as well. I have (real friends) that are cool with the idea. I am getting tired of explaining the disease and diet, but I remind myself that I didn't know much about celiac disease before diagnosis. Most, I think just want educated on the topic.

I refuse to let the disease define me. I still go out and do my activities when I can and I'm rebuilding my body. When I work out I have to keep "before sickness" body out of my head and focus on what I've got at the present. There's good days and bad days but I do seem to have more good days than bad. So I guess I'm headed in the right direction.

I admire your determination and hope that your good days will always outnumber the bad ones :-)

Thanks for your reply. I wonder if the olives just put me over the top. I've never been super sensitive, and have had all of the other things with no issues. I'm just frustrated, but thanks for your response.

I'm sorry for not being helpful and that you're feeling bad. Hope you figure it out

Perhaps it is a bad idea to judge how life has been in general when close to a glutenation, but I really doubt it's all in my head. For example, here I am today, visiting family away from home, yet I'm here left alone at their home by myself because I'm not feeling well, and everyone thinks I'm not feeling well because I don't distract or activate myself. So instead of keeping me company, they're out swimming.

It isn't my intention to be diverting the conversation away from the op, but I just think that basing our happiness on how others behave towards us, and specially when we're feeling lonely is a crappy side of life due to people not knowing enough about celiac! They actually think that our lives would not be as hard if we ate gluten because then we'd at least not be deprived of "food".

BZBee please let us know how it goes with your family and friends. 

Sorry to hear that Nate :-( *big hug*

Yes we know the feeling and our hearts are with you. Starvation won't help at all because lack of nutrients will contribute to making you feel this lousy about this whole situation.. I'm in the same boat. It's hard to see any positives when we're like this. 

I'm afraid I'm not that knowledgeable to be able to figure out why you're sick again. But try to retrace if something no matter how significant change at about the same time your symptoms came back.

It is hard to pinpoint what the culprit is, but it seems that most of your meals include gluten-free processed foods or ones (such as the olives) which were prepared in an environment that might not be 100%. Each one of them on it's own might not cause a reaction, but add each of them to the other in single day and you might have exceeded 10-20 ppm of gluten in one day, which will cause a reaction. There was a page I saw once that talked about this. I don't remember the address but you can try to google it.

Try only one single new food that you have never tried before in every one to two days (to allow a margin big enough which will indicate what caused the reaction). That way you eliminate having to test them all yet another time, or depriving yourself from all of them completely. 

I think that it is a good idea to check for other possibilities like you are doing.  You might also want to keep a food/symptom journal.  

 

It is possible to be this sensitive.  There is a subset of celiacs who react to gluten contamination in packaged foods.  I am one of them.  There has recently been a study published about celiacs who need a special gluten contamination elimination diet: Open Original Shared Link

 

I feel like I need to go even further than the diet used in the study.  There are some allowed foods which I need to avoid which I discovered with the food/symptom journal.  One thing that has helped me to expand my food choices is to communicate with others as sensitive as I am about the few things in boxes which we can eat.  It allows us to expand our choices without having to find out the hard way about everything.

 

I hope that you find out what is causing your problems and feel better soon.  When you ate the actual known wheat contamination, were the symptoms the same as the pain of unknown cause?  That would be a pretty good indication that the cause is gluten contamination.

Yes it was the same pinch / sting around my pelvis. It was a little worse in degree after eating the chicken, but I can distinguish it from other types of pain very easily, and it was it. I'll go visit the sensitive forum before actually expanding my diet. Thanks for the feedback Steph. 

It's been a while since you posted - I do hope the pain has subsided.

 

Thanks :-) I try to post from time to time, but am away from home at the moment. 

Thanks for all the tips everyone. It's a little overwhelming .. I really hope it's not my liver..  I'm trying not to jump the gun with bad scenarios just yet, but I'm really starting to re-evaluate if my diet is way too strict and if I should loosen the tie with what I eat.

Congratulations. Keep up with the high spirit, and don't get discouraged if some days feel harder again. Healing is through a curve just like learning.

I just realised PP might not be the best nickname! Sorry Prickly!

From Wikipedia:

Other symptoms include Open Original Shared Link^{Open Original Shared Link} and chronic fatigue.^{Open Original Shared Link}

In addition to pain during menstruation, the pain of endometriosis can occur at other times of the month. There can be pain with ovulation, pain associated with adhesions, pain caused by inflammation in the pelvic cavity, pain during bowel movements and urination, during general bodily movement like exercise, pain from standing or walking, and pain with intercourse. But the most desperate pain is usually with menstruation and many women dread having their periods. Pain can also start a week before menses, during and even a week after menses, or it can be constant.

I definitely have to see a doc about this the moment I get home. Thanks so much PP

Perhaps it gets worse when I'm glutened since my stomach swells up

Endometriosis is a 24/7 experience. Some days can be better/worse but overall it's all the time.

I don't know if c is linked to endo...sounds like that's something linked with an intolerance. Have you tried asking some if the super sensitives about what packaged food may contain - ALL packaged food? A preservative? Geez. I do sympathize. I went through a year of that kind of pain. It was awful.

From what I read so far c is is a symptom

The location of the pain is the same as endometriosis, but the pain can occur at any time of the month. Before, during, or after the period, and in the middle of my cycle. 

I think I should call the doctor about the possibility when I get home anyway! 

I'll check it out now. Thanks PP

Thank you Shadowicewolf too

The pain I get isn't anywhere near the chest. It's very low.. almost where the stomach joins with the thigh. 

My appendix is fine, but the doctor didn't mention my gallbladder. I'll do some reading about it now.

    you are entitled to your opinion, of course, dani... but I have to say that I simply cannot agree with any of those statements.

 

I think that whatever way WE view having celiac is the way the others in our lives will,  too. 

 

I certainly do not think life is rotten. I worked hard to get my life back to normal after being very ill and I do not really allow anyone to make me feel inferior or bad because I have celiac.

 

I do not talk about it that much with people (outside of other celiacs) because it is not the focal point of my life.

I choose times to promote celiac awareness, too because I think we are the only ones who can really make a difference in how it is perceived. 

 

Attitude plays a big part in adaptation and acceptance. IMHO

I am glad to hear that life has not been rotten to you :-) Mine on the other hand has been beyond rotten. Never works, whether I have a positive or negative attitude. All I ever get is people making faces and throwing opinions regarding my unreal diet, so I learned to simply live without caring about what they think or do. 

It must be nice to be surrounded by understanding, tolerant and nice people, but not everyone gets the luxury IH. If people knew about Celiac without us having to educate every last human we encounter, we wouldn't need to be explaining ourselves as often.

I never had stomach pains before going gluten-free.  5 months after going gluten-free however, I experienced a severe pinch/ sting in the very bottom of my stomach (by the pelvis bone) either to the left or right for two days. I assumed the pain was due to being glutened (since others specified that cramps can develop once a person has gone gluten-free). My assumption seemed to be accurate since I would experience those cramps (together with constipation) whenever I ate packed foods, but would not get any symptoms if I simply stuck to dishes which I've made at home from raw ingredients. 

By packed foods I don't mean chips or tv-dinners, I mean plain nuts, peanut butter, tahini, gluten-free soya sauce, vanilla essence, and things like that.

I live in sweden by the way, and many (but not all) manufacturers are not very knowledgeable about cross-contamination. I have called many companies and most of them process wheat or gluten containing ingredients in factories which produce foods that are supposed to be gluten-free. In sweden, most people think that simply not adding gluten to a food is what makes it gluten-free.

The thing is, it just seems unrealistic that I'm getting these cramps from almost any packed foods I eat. I'm starting to think it might be something else which is causing them, and that I'm depriving myself from eating many things needlessly. I have already tried so many brands of different foods, and the cramps usually show up. I went to the doctor complaining about these pains, and the man didn't find (or do) anything. 

My diet is already extremely restricted. I avoid eating sugar, soy, corn, potato, rice, lactose or legumes. I avoid eating them but that doesn't mean that I don't use corn or potato flour/ starch in cooking however. 

The cramps are not constant. They come and go throughout the day. I would feel a sharp pinch /sting by my pelvis either to the left or right, and my back muscles would be sore as well. They usually last for two days, and I would also experience constipation. I don't know if this is related but I usually get hungry for days once the cramps stop.

I'm away visiting family in London right now. I had some marinated chicken from the store the first day I got here which was 10 days ago, and the cramps started the day after of course together with the constipation. They were severe and painful. I was so fatigued I could barely move. I had to use medicine to get my stomach going because nothing else usually works. 

I had already decided not to cook in someone else's kitchen before arriving here, but I ended up having to do so after what happened with the chicken. As a result, my family were regarding me as an obsessed crazy person because I kept wanting to wash everything before using it, and because I'm always worried about someone dropping something into my food while / before cooking. Just the other day, I found an open bag of wafers lying on top of my cooking things. Exactly why I didn't want to cook outside my own kitchen.

I decided as a result to eat only raw foods and spare myself from worrying about people's reactions and absent-mindedness, but I started feeling really faint, so I bought myself some smoked salmon. The cramps persisted. Ouch. I went to the store again and bought nut-oat cookies this time (which also contain corn, tapioca and rice flour).. Not compatible with my no carb or sugar diet but I was really, really starving and feeling lethargic. 

The cramps seem to be subsiding now, but I can still feel some faint ones in the morning or evening. 

I am really sorry for mentioning this so please don't read on if you'll get grossed out: I was finally able to get BM on my own without medicine today and yesterday, but it was undigested food. 

I decided this morning to read the label of the salsa which was the same brand as the one used on the chicken the other day, and I found that it contains wheat.. meaning that I didn't just get cc from the chicken, but a full good dose of wheat. That was 10 days ago however! These cramps could be caused by some other problem that isn't being addressed. 

My brother thought that they could be caused by irritated bowels, and gave me buscopan. I didn't notice any change after taking it however. 

I'm begging anyone who has experienced these cramps or might know what could be causing them, heeeelp :-( I need to know if it's possible to be THIS sensitive.. to react to almost anything or if this might be something else. 

I'm worried that I'm simply depriving myself from sooooo many foods for no reason.

Whatever you decide to do, I hope you have a good time with your family.  You have the same issues I do....gluten and dairy and I am very sensitive myself.  I never felt the need to test food but that's not something I would do anyway.  I just really believe that you will be able to go and eat and not be sick as England has such high awareness and availabiltiy of gluten-free foods.

 

You need not apologize for asking questions.  I just hope we were able to put your mnd at ease about going and finding safe food. 

If you never felt the need to test I assume the labels are accurate which is good to know :-) Thanks so much.