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Stomach And Intestinal Spasms
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I've been at this now for about 15 months - gluten-free/DF/SF, non celiac (by blood and biopsy) but gluten intolerant (Enterolab). In the past 6 weeks I've noticed that my system has changed. I was feeling GREAT for over a year and then I started with nausea at times, always after I eat no matter what I eat, even though sometimes I eat very little and still hungry. If I go a day eating very little, it seems to get better, then the process starts up slowly again with the first meal I have. This nausea sometimes then turns into a feeling like my stomach and intestines are in spasm. It's not painful (yet) but certainly uncomfortable and scary. Nothing really helps this, not even pepto. Usually it's worse after lunch and dinner and if it's still bad by bedtime, resolves by the time I wake up. Oddly enough, when I'm not nauseous, my appetite is still intact.

GI's done some testing (blood work, hpylori, endoscopy, colonoscopy, abdominal ultrasound, even a stress test) and all looks good except a bit of scarring in my stomach - not sure from what, no idea how old it is, plus he noticed a slight acid reflux, which was a surprise too. I've never really had intestinal trouble in my life - my symptoms pre gluten-free were neuro, dizziness, which I don't seem to be having now unless my stomach is really upset. I thought I had the answer a couple weeks ago when I realized that the Burt's Bees lip gloss I wear has soybean oil in it. I stopped using it but no decrease in symptoms (and my lips are chapped!!!!)

Does anyone else have experience with intestinal spasms? Is this what others call bloating? It literally feels like someone is twisting my insides, starting with my stomach, then the sensation usually moves into my intestines.

Also, does anyone know if "scarring" found in my stomach could spontaneously be causing the onset of any of this? I can see it causing nausea perhaps, but intestinal spasms? Could it be interfering with my digestive process further down the line? Could slight acid reflux cause this?

GI prescribed Prilosec for acid reflux but it really didn't do anything to help and I have to go back in a couple weeks. After all these tests, I can't help thinking it's something simple. Perhaps a new food intolerance?

Any ideas or similar experience is appreciated.

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I've been at this now for about 15 months - gluten-free/DF/SF, non celiac (by blood and biopsy) but gluten intolerant (Enterolab). In the past 6 weeks I've noticed that my system has changed. I was feeling GREAT for over a year and then I started with nausea at times, always after I eat no matter what I eat, even though sometimes I eat very little and still hungry. If I go a day eating very little, it seems to get better, then the process starts up slowly again with the first meal I have. This nausea sometimes then turns into a feeling like my stomach and intestines are in spasm. It's not painful (yet) but certainly uncomfortable and scary. Nothing really helps this, not even pepto. Usually it's worse after lunch and dinner and if it's still bad by bedtime, resolves by the time I wake up. Oddly enough, when I'm not nauseous, my appetite is still intact.

GI's done some testing (blood work, hpylori, endoscopy, colonoscopy, abdominal ultrasound, even a stress test) and all looks good except a bit of scarring in my stomach - not sure from what, no idea how old it is, plus he noticed a slight acid reflux, which was a surprise too. I've never really had intestinal trouble in my life - my symptoms pre gluten-free were neuro, dizziness, which I don't seem to be having now unless my stomach is really upset. I thought I had the answer a couple weeks ago when I realized that the Burt's Bees lip gloss I wear has soybean oil in it. I stopped using it but no decrease in symptoms (and my lips are chapped!!!!)

Does anyone else have experience with intestinal spasms? Is this what others call bloating? It literally feels like someone is twisting my insides, starting with my stomach, then the sensation usually moves into my intestines.

Also, does anyone know if "scarring" found in my stomach could spontaneously be causing the onset of any of this? I can see it causing nausea perhaps, but intestinal spasms? Could it be interfering with my digestive process further down the line? Could slight acid reflux cause this?

GI prescribed Prilosec for acid reflux but it really didn't do anything to help and I have to go back in a couple weeks. After all these tests, I can't help thinking it's something simple. Perhaps a new food intolerance?

Any ideas or similar experience is appreciated.

Sounds a lot like my daughter, non-celiac gluten intolerant. She had major knife like chronic pain in her stomach which lessened considerably with gluten-free diet, an anti-spasmodic and low dose anti-depressant. What has never disappeared completely is the nausea. Sometimes it lessens during the day as she eats, but it is always present in the morning, and frequently awakens her at night. She takes generic zofran as needed, but it still doesn't stop it. We are trying to figure out if there are other food intolerances besides gluten and dairy. I'll be interested to hear how you make out.

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I know how miserable she must feel. Not sure how old she is but at any age, nausea can really impact your quality of life. I think the worst part of all this for me is not knowing what's causing it.

The first thing that came to mind when I read yours was soy. 15 months ago, I didn't chuck all my "gluten symptoms" until I totally removed that from my diet too. So that may be something to consider, and just like gluten and dairy, it's hidden in many foods. Last time I checked, I can't tolerate soybean oil or ingredients like soya lecithin. And you may be already familiar with cc from shampoo, lotions, lip gloss, etc.

I actually had an appt with my GI yesterday and she thinks I have an excess of stomach acid (from what I do not know, because I thought your stomach acid declined as you age and I am 56) - Anyway, she also thinks that the scarring found in my stomach may be the culprit - supposedly from some past trauma, surgery or infection and that has me more than a little perplexed. Anyway - she prescribed a strong acid reducer and something to rebuild my mucosal stomach lining which she suspects is deteriorated. For the spasms she prescribed generic Bentyl. I have to say that I've taken all of it for 24 hours and do not feel any better just yet but I am hopeful. I'm sitting here starving but do not want to eat because I know I will get nauseous. Errrrr.

I hope you can figure out what is going on for your daughter. If all this works for me, or if it doesn't, I will let you know. I'm fairly tenacious and do not give up easily so I intend on getting the answer, fixing this and moving on.

Thanks for writing.

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Sounds a lot like my daughter, non-celiac gluten intolerant. She had major knife like chronic pain in her stomach which lessened considerably with gluten-free diet, an anti-spasmodic and low dose anti-depressant. What has never disappeared completely is the nausea. Sometimes it lessens during the day as she eats, but it is always present in the morning, and frequently awakens her at night. She takes generic zofran as needed, but it still doesn't stop it. We are trying to figure out if there are other food intolerances besides gluten and dairy. I'll be interested to hear how you make out.

I would be thinking hypo glycemia

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Just an update on all this. I'm feeling much better now, back to my old post-gluten self. I've read about alot of people taking a step back in their symptoms and I can only say I seem to have experienced that first hand. In my case, I think it was the synergy of a few things that started the ball rolling, giving me mystery nausea and weird stomach spasms beginning a few months ago.

As recently as a week ago, doctors tried hard to sell me on what was causing my trouble, after testing me for everything short of CHOLERA - even urging me to have stomach surgery to remove a bit of scarring I've lived with for many years with no problem. But all along I suspected it was something very simple. And after the last couple weeks of progressively feeling better (even SANS all the medication Drs. originally put me on - yes - I am hard-headed and hate to take pills until I'm convinced it is 100% necessary) I think I have it figured out. Simple cross contamination. This has been a good lesson - sometimes when you think you know something for sure, look again with fresh eyes.

Burt's Bees lip gloss - gluten free but contains soybean oil. Loved it for years - but in the trash!

Mercola probiotics - touted as gluten free but a specific quizzing of the company revealed that they are NOT manufactured in a gluten free factory.

Dr. Ohirra's probiotics. I had taken them before seemingly with no problems so thought they were OK. A simple reading of the label prominently showed (duh) "contains soybeans" - although they assured me it should not affect me, perhaps with a weird stomach acid rev the pills were breaking down in my system before they reached the proper destination.

The only thing I know for sure is that I'm feeling great again - no nausea, no bizarre stomach spasms. All since I've removed all of those things, retaining the abdominal scar tissue as a souvenir. I have some Custom Probiotics in the mail to me (fingers crossed), but I'm also going to try my hand at making homemade sauerkraut. Made me realize how lucky I was to stumble onto this whole gluten problem over a year ago. If not, I may have wound up with unnecessary surgery, and since it was the only thing doctors didn't test, I admit that it was still possible to have died of cholera. I'm starting to really feel safe in my gluten free world!!!

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hi there thats great u found out it was cross contamination. i suffer from really bad intestinal cramps almost like someone is twisting them and the pain can last for hours. one thing that has literally kept me out of the hospital is natures sunshine intestinal soothe and build. please people if u suffer from diarrhea, pain and any other symptoms, try this. i accidently ate gluten one time and was in the hospital they wanted to take out my appendix because of the symptoms they were so similiar. but it was a gluten attack. nothing they gave me worked until i took a few of those pills and surely the next day i was fine.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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