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JaneWhoLovesRain

Does Anyone Have Either Of These 2 Symptoms

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1) I have horrible intestinal noises - borborygmus. This is not the usual stomach growling when hungry kind of noise, but comes within the large intestine. They are loud, embarrasingly so. When they occur I can feel movement from within my intestines, almost painful and pressure like. The movement follows from one end of my instestines to the other and goes along with the noise. Almost feels like I am passing gas backwards. (sorry, gross). When I say loud I mean loud, someone once thought it was a motorcycle. I asked one doctor and she said "oh that's normal." (but she didn't hear the noises) I say it's not. I've never heard these noises coming out of anyone else and judging by people's reactions when they hear this I don't think they have either.

2) Occassionaly, 2 or 3 times year I am stricken with severe abdominal pains. My entire abdomen hurts from top to botom, very sensitive to pressure, pain can extend up into the chest. The pressure from walking as my feet hit the ground increases the pain. I can't stand straight. The only semi-comfortable positon is to curl up in a ball. Stretching the abdomen makes it worse. It is terrible painful, I can't do anything when this happens except lie there and suffer. Maybe it is gas pains?? But I have never heard of anyone having pains like this. This part is weird - they often start if I am very hungy (have an empty stomach) and have a very full bladder. After I urinate the pains start. Is that weird or what? Definitely not appendicitis but hurts a lot more than that.

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One of the most pleasant things about being gluten free is not having to listen to those noises or carry a jacket everywhere to ball up and try to muffle them. For me those noises started in childhood and I realized that if I didn't eat breakfast my tummy would be quieter. I was the nerd that got picked on as it was so I really didn't need anything else for the kids to tease me about. So I stopped eating breakfast. Of course this was also about the time I was covered in DH and started having intestinal impactions but of course no one thought to test me for celiac.

I also unfortunately am all to familiar with that pain. I still get it when I get glutened. There are no words to describe it and it and other symptoms are good incentives to me to be really careful about what I eat. Soy will also give me that same pain.

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Well, if you know you are not getting gluten in your diet, and you have eliminated all other food intolerances or likely food intolerances, then it is probably time to look at other possibilities. Crohn's is one, as it can be episodic as far as symptoms go. I wouldn't be checking for it though until I was sure there was no possible gluten in my diet and I wasn't reacting to other foods or alcohol. But if those are not the problem then something else is. So that's where I'd think some testing might help. I am sure there are other possibilities, that's just the one that popped in my head.

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Raven and gluten-free - thank you for your response!

I haven't been 100% gluten free but close to it. I suspect there is cc in what I eat (such as arrowhead puffed rice) and not everything I have been eating is labeled gluten free, but I assume it is, such as tomato sauce. I've been posting in the DH part of this forum as I suspect I have DH even though I can't get a doctor to think the same way. I never thought of myself as having intestinal problems though in retrospect I have for most of my life. The above two are examples. I always thought it was "normal."

Since going gluten-free (and dairy/chocolate/nut free plus a few other things) 2 years ago the above two problems have diminished. But over the last month I have been eating small amounts of gluten (one oreo a week) hoping to keep this weird rash going as I had an appt with the dermo today and I wanted him to see it. The rash had almost disappeared but started again, just a tiny bit, when I started with the oreo a week. My intestinal problems have also made a comeback.

The dermo appt was a total waste of time and now I will be going 100% gluten free. Hopefully the rash will go away as will the tummy troubles.

I've brought most of the foods I gave up two years ago back into my life (except for gluten). Too much dairy may be a problem so I do limit that. There is only so much one can give up without starving.

I don't think I have Crohn's disease as my colonoscopy was normal. That would show on the c-scope wouldn't it?

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I get that rumbling noise with what feels like movement in my stomach too! I have not been diagnosed yet. I hope we both find answers here =]

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Have you tried digestive enzymes? Carbs can be hard to digest if your system isn't operating 100% normal. Fats can be a problem too. Gas is created from the foods fermenting in your gut.

The gluten from the cookies you've been eating might have been enough to knock down the CCK production in your gut. CCK is produced in the small intestine and is what tells your gallbladder and pancreas to squeeze release the enzymes you need to break down the foods you eat.

It's a good idea to take the enzymes for a while even gluten-free as your gut heals. Going gluten-free should help that nasty rash heal too, but it's a slow process.

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Raven and gluten-free - thank you for your response!

I haven't been 100% gluten free but close to it. I suspect there is cc in what I eat (such as arrowhead puffed rice) and not everything I have been eating is labeled gluten free, but I assume it is, such as tomato sauce. I've been posting in the DH part of this forum as I suspect I have DH even though I can't get a doctor to think the same way. I never thought of myself as having intestinal problems though in retrospect I have for most of my life. The above two are examples. I always thought it was "normal."

Since going gluten-free (and dairy/chocolate/nut free plus a few other things) 2 years ago the above two problems have diminished. But over the last month I have been eating small amounts of gluten (one oreo a week) hoping to keep this weird rash going as I had an appt with the dermo today and I wanted him to see it. The rash had almost disappeared but started again, just a tiny bit, when I started with the oreo a week. My intestinal problems have also made a comeback.

The dermo appt was a total waste of time and now I will be going 100% gluten free. Hopefully the rash will go away as will the tummy troubles.

I've brought most of the foods I gave up two years ago back into my life (except for gluten). Too much dairy may be a problem so I do limit that. There is only so much one can give up without starving.

I don't think I have Crohn's disease as my colonoscopy was normal. That would show on the c-scope wouldn't it?

Hi, Yes, I think they would see Crohn's damage on the colonoscopy.

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Have you tried digestive enzymes? Carbs can be hard to digest if your system isn't operating 100% normal. Fats can be a problem too. Gas is created from the foods fermenting in your gut.

The gluten from the cookies you've been eating might have been enough to knock down the CCK production in your gut. CCK is produced in the small intestine and is what tells your gallbladder and pancreas to squeeze release the enzymes you need to break down the foods you eat.

It's a good idea to take the enzymes for a while even gluten-free as your gut heals. Going gluten-free should help that nasty rash heal too, but it's a slow process.

What are digestive enzymes and how do I take them?

Thanks, Jane

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Okay, so only 2 people out of all that have read this post have said they have had one or both of my mentioned symptoms. Does tht mean that these symptoms are most likely not gluten related? Or is is that most people are lurkers rather than responders? Just curious.

Jane

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Okay, so only 2 people out of all that have read this post have said they have had one or both of my mentioned symptoms. Does tht mean that these symptoms are most likely not gluten related? Or is is that most people are lurkers rather than responders? Just curious.

Jane

I don't think so. Hopefully your question will get a couple more responses. Some are lurkers, some may not be members yet, some will not have time to answer, some will think the question has already been answered and not have anything to add etc. There are many reasons why folks get lots of reads but not all respond. It happens all the time.

You might want to post the digestive enzyme question in a new thread. Many find them helpful but personally I don't know a lot about them.

I do hope your feeling better soon.

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Okay, so only 2 people out of all that have read this post have said they have had one or both of my mentioned symptoms. Does tht mean that these symptoms are most likely not gluten related? Or is is that most people are lurkers rather than responders? Just curious.

Jane

I agree with Raven. Symptoms are as varied as individuals themselves. Personally I have not experienced your symptoms but that doesn't mean much of anything. Nor did I experience withdrawal symptoms, brain fog or ataxia, all of which others may have experienced.

You might want to use the google button on the top right of your screen and do a search for digestive enzymes, which I'm sure have been mentioned a number of times before. Or start a new thread as Raven suggested.

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Hi Jane,

I used to have abdominal pain, but mine was more constant than episodic. Digestive enzymes come in 2 varieties, vegetable and animal. The vergetable versions use natural plant enzymes like papain from pineapple to assist with digesting foods you eat. The animal forms use enzymes for animals like ox bile. Both kinds can help. Raw foods have enzymes in them that break them down. That's one of the selling points people use for the raw food diet. But basically you take the digestive enzymes a little while before you eat., or when you eat. Follow the directions on the package and you should be ok.

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What are digestive enzymes and how do I take them?

Thanks, Jane

Sorry..I've been away for a couple of days, or I would have answered sooner.

Digestive enzymes help break down and digest your food, so you can absorb the nutrients. I got them as an "over the counter" supplement and used them for a while. I used the mostly plant based ones and ate pineapple with meals that had very a lot of beans, meat or fatty meat, to help too. Then, I had some additional tests and was told the enzymes were a very good idea for me. I was put on RX ones.

I took them when I ate a meal, as the directions on the bottle said. The RX ones I take one capsule with snacks and 2 with a meal.

Digestive enzymes and probiotics do a world of good to a very taxed digestive system.

The symptoms you asked about..I very occasionally got the really loud rumbling.

I got pain in my belly that made me feel every footstep when gas occurred real high up in my intestine. It's a sure sign that you're not digesting properly. The food is fermenting.

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I forgot one other thing. Betaine HCL is a pill you take before eating, It turns to hydrochloric acid in the stomach. It can help with digestion also, especially if your stomach acid is low for some reason.

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Sometimes I can feel movement of the intestines as you describe, but I don't have the loud noise as you. Later I will have problem with gas.

The second part of your question:" But I have never heard of anyone having pains like this." I did. It's me. I have been having this pain trough my life. I'm calling it gas trap. If I have it, I can't move the same way as you. I had it in the past, before going gluten and casein free occasionally, but now more often. I learned what to do to stop it: 1. You can try to drink 1 bottle of plain water at once. Water will push trapped gas out.

2. Another trick, which is little funny, but helpful is: Kneel down and lay your head on a pillow, or floor, and stick your but out. Do this for 3-5 minutes. This should move trapped gas forward. After this lay on your left side for 10-15 minutes and later on your right side. You should feel better afterwards.

My reason for this pain is related to fruit intolerance (you can have it too because now we are forced to eat more fruits and vegetables- there isn't to many safe food to eat in a hurry, so fruit it is the one quick solution) and just recently to consumption of corn, legumes and soy. Also all vegetables that are listed here:

http://www.healthcommunities.com/gas-pain/gas-bloating-overview.shtml

Not to long ago I heard gastroenterologist speaks on the show The Doctors about reasons for gas after eating dairy, fruit, legumes, etc. He sad that everything is caused by bad bacteria in our gut and that people should eat probiotics. I have been eating them like crazy and I can say, that he was right (I had twice stomach flu in three monts- my digestion was not existing). If I will eat probiotics right after food that can cause this, I won't have such a strong reaction.

If you have been eating gluten for a wail, your intestine can have inflammation and bad bacteria can take over. Probiotics would be a smart thing to do.

Also, as other sad, the digestive enzymes can help you too.

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1) I have horrible intestinal noises - borborygmus. This is not the usual stomach growling when hungry kind of noise, but comes within the large intestine. They are loud, embarrasingly so. When they occur I can feel movement from within my intestines, almost painful and pressure like. The movement follows from one end of my instestines to the other and goes along with the noise. Almost feels like I am passing gas backwards. (sorry, gross). When I say loud I mean loud, someone once thought it was a motorcycle. I asked one doctor and she said "oh that's normal." (but she didn't hear the noises) I say it's not. I've never heard these noises coming out of anyone else and judging by people's reactions when they hear this I don't think they have either.

2) Occassionaly, 2 or 3 times year I am stricken with severe abdominal pains. My entire abdomen hurts from top to botom, very sensitive to pressure, pain can extend up into the chest. The pressure from walking as my feet hit the ground increases the pain. I can't stand straight. The only semi-comfortable positon is to curl up in a ball. Stretching the abdomen makes it worse. It is terrible painful, I can't do anything when this happens except lie there and suffer. Maybe it is gas pains?? But I have never heard of anyone having pains like this. This part is weird - they often start if I am very hungy (have an empty stomach) and have a very full bladder. After I urinate the pains start. Is that weird or what? Definitely not appendicitis but hurts a lot more than that.

Hi Jane,

I'm rather new at Celiac.com as well, but I will reply. I sense your frustration with the lack of replies and I can relate. I have the gurgling sounds in my intestines, but it usually starts in my upper digestive tract(small intestines) and sounds like air and water gurgling in a water pipe. I now understand that my small intestine is reacting from gluten and the water is "gathering" to wash the undigested food out of my gut. This happens when I am glutened and is the harbinger of bad things to come a few hours later - namely the big "D". As the gurgles move into my large bowel, they become more like cramps and I know the inevitable is coming, so I stay close to the toilet. Don't mean to be too graphic, but think it's only helpful if we're completely honest. I've never had to bend double in the fetal position, because by the time I get to the cramp stage, I'm sitting on the "throne".

You need to push your Dr's for a definitive diagnosis. It took almost 2 years for me to get mine and by that time, I had already lost 40 lbs. Opposite your experience, but I understand some gain weight instead of losing. I don't pretend to understand all the implications of that; I just know it's a mysterious disease and requires continued vigilance and management. Even after diagnosis, I lost another 40 lbs for a total of 80 lbs. Hidden gluten in Restaurant food, pot luck dinners, etc. I am now finding out that I am anemic (RBC) and my White Blood Count has even gone below minimum. I've recommited myself to managing my diet better and am doing better from the symptoms standpoint. I have another blood test coming in July and am hoping for some improvement there. I've had to become much more strict with waiters, Chefs, and restaurant managers and I'm sure they may get tired of the interrogation, but, by golly, I'm tired of losing my health to hidden gluten and just not going to stand for it anymore.

You hang in there and push for a definitive diagnosis - be the squeaky wheel and insist on it!!! Then if Celiac is the culprit - you'll know what to do. It will take some time, but you will get better if you learn the diet and insist on strict compliance - from yourself and those who "feed" you.

I'm 4 years out from diagnosis (endoscopy-confirmed flattened villi); blood tests were negative) and I'm still not fully recovered - but after battening down the hatches diet-wise, I feel much better and (knock on wood), I've not had the big "D" in several weeks now! I've gained 2 lbs (big for me) and the body "hum" is a bit diminished and I feel stronger; hopefully means the anemia is improving?

Bob

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Jane, hon-- Please call the doctor whose name I gave to you.

He is the best at rooting out the source of the problem.

I see you are still suffering and I really think he can help you.

for digestive enzymes, I use Digest Gold from Enzymedica.

I would suggest you do not use once containing Betaine HCL unless you are sure you have low stomach acid, otherwise, you will have a burning sensation in your stomach.

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Before I went gluten-free I had loud stomach rumblings all the time. All sorts of sounds! I also had episodes of bloating that caused bad pain, to the point I couldn't stand up strait and walk. I had to sit down or double over. Like others have said though, everyone is different and not everyones' symptoms are the same.

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I get that rumbling noise with what feels like movement in my stomach too! I have not been diagnosed yet. I hope we both find answers here =]

Same for me! It usually rumbles several times too before it stops.

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I have the rumbly tummy thing too. Never when I am hungry, or have eaten something 'safe', but it goes mental when I've eaten gluten. I'm on a 'celiac suicide mission' right now getting ready for an endoscopy in two weeks to get my official diagnosis. Had pizza for my dinner today and my tummy sounds like most people's does when they are starving. Can feel bits of my intestine sort of 'pop' and sqiggle here and there too. Strange symptom, this one. I get the abdominal pains too, but only is I successfully eat gluten and manage not to throw up!!

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I have had both of the symptoms you describe - the gurgling sounds like a starbucks coffee machine attached to a PA system. The pain is often acompanied by extortionate amounts of gas - like there will be no end to it and it is a living nightmare.

A few christmases ago, I came back from the in laws on xmas day and pain got progressively worse that I thought i was dying - it came in waves so strong I thought I was going to pass out and it made me feel very faint.

\even when I have come through an attack I feel injured for days.

When I am in pain and have trapped gas even travelling in a car is painful going over the bumps that I have to sit to one side.

I am self diagnosed with a positve gene test and have repsonded positively to a gluten and dairy free diet that these sypmtoms are increasingly rare thankfully.

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