I Really Need Help :-(

[dani nero]

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.

[shadowicewolf]

Glutenings can last for quite some time. However, from what you've said have you had your appendix or  your gallbladder checked?

[dani nero]

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

[dani nero]

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

[pricklypear1971]

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

Dani, do you think it could be ovarian pressure?

I know you feel it after you eat...but maybe it's pressure from gas, or the rumbling of your gi tract protesting....over something.

I suggest this because I have had lower abdominal pain mixed with pain that was probably....endometriosis.

I was set up for a vaginal/uterine laperoscopy when I got pregnant...which miraculously cured all of it. But the pain would hit when I was super hungry or after I ate...the specific mixed pain. What I would call angry intestines putting pressure on an angry uterus.

Anyway, something to consider. Read about endometriosis and see if it sounds like what you're feeling. If your hormones are out of whack, it could be aggravating it, too.

[dani nero]

I'll check it out now. Thanks PP

Thank you Shadowicewolf too

[pricklypear1971]

I'll check it out now. Thanks PP

Thank you Shadowicewolf too

Endometriosis pain is unfortunately as vague as celiac pain...but it's worth a read.

[dani nero]

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! 

[pricklypear1971]

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!

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.

[dani nero]

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

[dani nero]

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

[dani nero]

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

[pricklypear1971]

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

LOL!

[mamaw]

hope  you get better soon. check out  stomach ulcer,  gallbladder, kidney  stones....

[w8in4dave]

Your probably right on track with the "PP" my Daughter has it and is usually in pain all the time!! Good luck! Hope you find your answers! My pain from Celiac was always lower, More in the middle lower, it was always such a sharp pain!! I don't know if any of this info helps but ya never know!! 

 

           Good luck! 

[deb445]

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

 

I wonder - my son gets a sharp pain too, when he has been glutened. Our

naturalpath suggested that it might be caused by a congested liver - my

understanding is that the glutening creates toxins that the liver can process. 

 

We treat with MSM capsules and a marshmallow root tea.

 

I hope your visit gets a bit better....

[dilettantesteph]

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.

[dani nero]

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.

[dani nero]

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. 

[Pegleg84]

Hi Dani

 

the pain you're having sounds familiar! I had the worst pain ever (worse than most glutenings) last year after a bowl of quinoa (which I am still avoiding out of fear), and now get the same pain (less intense, thank goodness) on occasion when I eat random things like too much brown rice, or heavy meat, or anything that my gut decides it doesn't want to deal with. This is sometimes but not always after a glutening. It's more or less in the same spot you're describing. I still don't know exactly what's causing it, but during my biopsy last year they saw some mild gastritis, so I still wonder whether that's completely healed or not.

 

In any case, you got glutened, and you're away from home, trying to survive on things your not used to. It could be so bad simply because you've been thrown off your usual diet. It's also possible that you're eating more of the foods you're sensitive to (corn, soy, etc etc) than usual, which is just making things worse. It could be something more serious, but best not to jump to conclusions until you're home and back to your usual routine and see if it settles down. If not, get everything else checked out. It's also possible that you're becoming more sensitive (this happened to me too), so even trace amounts in some packaged/processed foods is starting to bother you.

When you do get home and back in control, I'd avoid eating ANY of the foods you're sensitive to. sometime cutting them out completely can make all the difference. (I went from occasional dairy/soy, to no dairy/soy. big difference).

 

Nothing's worse than being sick on vacation, so I hope you can get through it!

Cheers!

[dani nero]

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 :-)

[cyclinglady]

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

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. 

[dani nero]

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

[Pegleg84]

sounds like we might be in the same boat, Dani. The pain comes back, never as bad, but still, well, pain.

Let me know what the doc says.

 

Enjoy the rest of your time in England first.

[shadowicewolf]

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 also had my gallbladder removed (working at 5%, causing lots of pain). All but the HIDA scan came back normal.