Need Urgent Help With Recurring Bedtime Bloating

[DigiSage]

I'm really at my wit's end here, typing this on my iPhone from bed, in pain, hoping someone can help me. I realize that I'm new here but hopefully someone can help.

Basically, for the last year or so, every night, when I go to bed, I become painfully bloated. It feels like I have a ton of gas, but I'm unable to expell it. For months I worked with various doctors to try to fix it. Nothing worked. Eventually I got desperate and paid for my own enterolab test, which diagnosed me as gluten and soy intollerant. I came back negative for egg, caesin, yeast.

So, I immediately read a ton about being gluten (and soy)-free and changed my diet accordingly. I've gone over every substance that comes in contact with my body and made sure that they were all gluten-free.

About 3 days after embarking on this diet, my nighttime bloating went 100% away. It was amazing. But then a few days after that, I accidentally got glutened and 2 nights later, the problem returned. It's been nearly 3 weeks and I still have the pain, despite relgious gluten and soy avoidance and careful attention paid to all sources of cross-contamination.

The pain is very odd. It is not time-based. It simply starts when I go to bed, whether that's 9pm or 2am. I just feel like I have an extremely painfully large amount of gas that will not pass. It's so awful and has really messed up my sleep and thus, the rest of my life.

The pain does not respond to or change whatsoever by the following things:

different kinds of food

maalox, pepto

pepcid

Zantac

proton pump inhibitors

gas-ex, even in gigantic doses

not eating for many hours before bed

going to bathroom right before bed

eating before bed

There was nothing of significance on the day when the pain first started. I've tried different bed sheets, sleeping in a different area. Nothing makes my damned difference at all. I take Lunesta at bed time, but the pain usually starts even before then.

I usually do not have the problem during the day. Only before bed.

At one point, I also had upper endoscopy and nothing significant was found.

I am quite confident I am not unknowingly ingesting gluten somewhere.

Specific questions:

(1) I felt better after 3 days of gluten-free but then had one slipup and am in pain for 3 weeks, just like before I was gluten-free. Is this common?

(2) Does this sort of thing (bedtime-only bloating) happen often to celiacs or am I barking up the wrong tree?

(3) What can I do to end the pain? Even 3 vicodins did nothing. I know this sounds strange, but if somehow I could hve a valve installed to just expell this gas directlyy when it builds up, it would be the most amazing relief in the world.

I'm sure there are lots of details I've accdentally left out so feel free to ask me anything if you think you can help me.

Please, I beg of you, help me. I am extremely desperate and am open to anything.

I will seriously pay any amount or travel anywhere to someone who can fix this for me. If there's a doctor out there I can visit that can just run every test imaginable and not simply give up on me with "IBS", he or she will be paid very well. I am desperate.

[mushroom]

I'm really at my wit's end here, typing this on my iPhone from bed, in pain, hoping someone can help me. I realize that I'm new here but hopefully someone can help.

Basically, for the last year or so, every night, when I go to bed, I become painfully bloated. It feels like I have a ton of gas, but I'm unable to expell it. For months I worked with various doctors to try to fix it. Nothing worked. Eventually I got desperate and paid for my own enterolab test, which diagnosed me as gluten and soy intollerant. I came back negative for egg, caesin, yeast.

So, I immediately read a ton about being gluten (and soy)-free and changed my diet accordingly. I've gone over every substance that comes in contact with my body and made sure that they were all gluten-free.

About 3 days after embarking on this diet, my nighttime bloating went 100% away. It was amazing. But then a few days after that, I accidentally got glutened and 2 nights later, the problem returned. It's been nearly 3 weeks and I still have the pain, despite relgious gluten and soy avoidance and careful attention paid to all sources of cross-contamination.

The pain is very odd. It is not time-based. It simply starts when I go to bed, whether that's 9pm or 2am. I just feel like I have an extremely painfully large amount of gas that will not pass. It's so awful and has really messed up my sleep and thus, the rest of my life.

The pain does not respond to or change whatsoever by the following things:

different kinds of food

maalox, pepto

pepcid

Zantac

proton pump inhibitors

gas-ex, even in gigantic doses

not eating for many hours before bed

going to bathroom right before bed

eating before bed

There was nothing of significance on the day when the pain first started. I've tried different bed sheets, sleeping in a different area. Nothing makes my damned difference at all. I take Lunesta at bed time, but the pain usually starts even before then.

I usually do not have the problem during the day. Only before bed.

At one point, I also had upper endoscopy and nothing significant was found.

I am quite confident I am not unknowingly ingesting gluten somewhere.

Specific questions:

(1) I felt better after 3 days of gluten-free but then had one slipup and am in pain for 3 weeks, just like before I was gluten-free. Is this common?

(2) Does this sort of thing (bedtime-only bloating) happen often to celiacs or am I barking up the wrong tree?

(3) What can I do to end the pain? Even 3 vicodins did nothing. I know this sounds strange, but if somehow I could hve a valve installed to just expell this gas directlyy when it builds up, it would be the most amazing relief in the world.

I'm sure there are lots of details I've accdentally left out so feel free to ask me anything if you think you can help me.

Please, I beg of you, help me. I am extremely desperate and am open to anything.

I will seriously pay any amount or travel anywhere to someone who can fix this for me. If there's a doctor out there I can visit that can just run every test imaginable and not simply give up on me with "IBS", he or she will be paid very well. I am desperate.

Hi, and welcome to the forum.

I can really sympathize with the night-time bloats. It was always the major feature of my gluten problems. Along with it goes racing heart, difficulty breathing, and fainting if I get out of bed and stand up. It went away after I identified, successively, corn, gluten, soy, nightshades and I did really well with sleeping. Lately it has come back and I cannot identify why.

I do not know if you can tolerate yogurt, but I find if I coat my stomach with a good layer of yogurt it calms down the uproar (I have to have my hubby go down and get it for me, lol, or else I might pass out.) Recently I have noticed the return of fullness at the dinner table and gas before I go to bed, so last night I decided to go back on my digestive enzymes, which I took for quite some period of time after gluten free because my pancreas was not producing enough of them. This made an enormous difference last night. Nipped that old gas right in the bud. So that's another thing you might try. Many people take probiotices (acidophilus and the like) to promote the growth of good bacteria in the gut and this seems to help with digestion too. So there are three ideas you might try to help your digestive system. I hope you find something that works soon.

(I am also a prolific user of Gas-Ex and I am a very good belcher, getting rid of all that gas (I have had a lifetime of experience at it, ever since I was 21).) I also know what you mean about a release valve. I come from a sheep-farming family, and sheep often get cases of the bloats, sometimes fatal. My dad would take something like an ice pick and just stab the gut of the sheep and the gas would come roaring out. If often wish my dad were still here with his ice pick, lol)

[DigiSage]

Thank you for the suggestions. I've tried probiotics and also some really good digestive enzymes (recommended here somewhere) and they've not made a difference. I also used to eat yogurt like crazy but actually cut it out hoping that it was the cause of my problems, but so far it hasn't made a difference either.

I don't ever feel like I'm going to faint or anything, or feel my heart speed up, it's really just the gas/bloating :-(

Do you or anyone else have any other suggestions?

[mushroom]

Do you or anyone else have any other suggestions?

The only other thing I can think of to try is to really simplify your diet, no grains or processed foods, but back-to-basics, easy-to-digest things like fish, rice, cooked vegetables (not the crucifers like broccoli or cabbage), cooked fruits, chicken, and see if that makes any difference. Soups with rice in them, stuff like that. Avoid the nightshade family for now because they really bother some folks (tomatoes, peppers, eggplant, potatoes). See how you go with that. Keep a food diary and if you are doing all right in a couple of weeks, add things back in one at a time. It might help you get a handle on what is playing havoc with your digestive system. Of course, if it were me, I would continue to take the digestive enzymes and give my body all the help I can. You must remember that celiac disease inflames the gut and it needs a chance to heal before it can properly digest anything.

[DigiSage]

I'm already off dairy (and gluten-containing-foods, of course). If I take out tomatoes and potatoes, there is literally nothing left for me to eat. I could probably find a way to make it work but it would be extremely difficult.

I'll be blunt: I'm aware of my own limitations of self control and willpower. Based on this awareness, I know that I would not be able to stick to such a diet for any significant length of time. Case in point: I was unable to stick to a gluten free diet until I had test results in hand (enterolab) that told me I was gluten intolerant. Once I had those test results, it's easy.

So my question for you is: what other decent food allergy tests are out there? I took every single test enterolab offered (cost a pretty penny). I've seen other tests online, usually blood-based, but I've seen a lot of posts discrediting their results.

Basically, I'm worn down and simply lack the mental faculties to deal with this much more on my own. I need some data (from tests) and a goddamn doctor who will actually help me. The one gastroenterologist I saw was beyond useless. I have a referral to another, who is described as "the Dr. House of gastroenterology (without the drug addiction)". Or should I pursue a nutritionist instead at this point?

I really don't know what to do. I'm in even more pain now than I was last night, and it's only 6:47PM. This problem is too big for me to handle on my own. I've just taken 980mg simethicone (gas-x), maybe it will actually do something this time (so far I can't say it's ever helped me.)

[GFinDC]

I suggest you try some peppermint tea. It helps get the burps out. Also avoid any sugar for a while.

[mushroom]

Well, I'll be equally blunt, DigiSage, there is nothing I can do to give you the willpower to take care of your own health. If you are unwilling to do it, I cannot do it for you. It is really not that hard and it would not be for long. And no doctor is going to be able to give you a magic pill or shot and make it all better. I am sorry to say, it is something you yourself have to work at. Be your own Sherlock Holmes and find out what it is. As it is, I eat no tomatoes or potatoes, no soy or corn and really, for a while, you certainly can survive without them. It depends on how badly you want to feel better.

If you were willing to pay the money, Enterolab can do a stool test for you which can highlight some of the food sensitivities you may have, but my own stool testing was not particularly helpful in that regard, picking up on casein and eggs which are not a problem for me at all (I was only lactose intolerant). It did verify my soy sensitivity.

At any rate, it is all up to you. If you feel badly enough you will want to do it to feel better. If not, well that is your choice. You can spend lots of money chasing multiple doctors who most likely will be of minimal help to you. In the end this mostly turns out to be a self-help disease which is why most of us find this forum so valuable. I am sorry we cannot offer you an easy way out.

[EJR]

I'm already off dairy (and gluten-containing-foods, of course). If I take out tomatoes and potatoes, there is literally nothing left for me to eat. I could probably find a way to make it work but it would be extremely difficult.

I'll be blunt: I'm aware of my own limitations of self control and willpower. Based on this awareness, I know that I would not be able to stick to such a diet for any significant length of time. Case in point: I was unable to stick to a gluten free diet until I had test results in hand (enterolab) that told me I was gluten intolerant. Once I had those test results, it's easy.

So my question for you is: what other decent food allergy tests are out there? I took every single test enterolab offered (cost a pretty penny). I've seen other tests online, usually blood-based, but I've seen a lot of posts discrediting their results.

Basically, I'm worn down and simply lack the mental faculties to deal with this much more on my own. I need some data (from tests) and a goddamn doctor who will actually help me. The one gastroenterologist I saw was beyond useless. I have a referral to another, who is described as "the Dr. House of gastroenterology (without the drug addiction)". Or should I pursue a nutritionist instead at this point?

I really don't know what to do. I'm in even more pain now than I was last night, and it's only 6:47PM. This problem is too big for me to handle on my own. I've just taken 980mg simethicone (gas-x), maybe it will actually do something this time (so far I can't say it's ever helped me.)

Hi DigiSage,

Simethicone (gas-x) does absolutely nothing for me either. I suffer from similar bloat every night and sometimes

during the late afternoon as well. I read that simethicone is only effective against gas in the upper digestive tract and in particular the stomach. This is not where my bloat problem occurs. It always starts as the bulk of the food I have eaten during the day hits my large intestine. This of course explains why it occurs every evening. Apparently gas/bloat in the large intestine is not affected by simethicone. Also take a look at

some of the extra ingredients in simethicone. There may be something there that bothers you as well.

I understand your frustration. I have been feeling like this for two years now (started after having my gall bladder removed). Like you I cannot sleep at night because the feeling that my bowel is going to blow up is so strong it is unbelievable. The pressure and pain are so powerful that they often trigger tachycardia when I try to sleep. Doctors have been virtually useless for me, also. And a few of them downright rude and sarcastic (e.g. eat more

fibre as if I don't know that). When I eat more fibre I get the terrible bloat and pressure even more. I also have to take medication in order to sleep. I am 63 years old and have never needed to take any kind of pain/sleep medication before. And now I believe the medication may be causing me problems (my liver enzymes are elevated). I see my doctor tomorrow but only because I had an ultrasound done and I want to make sure she takes the time to at least look at it. Their office is notorious for loosing the tests that are sent to them.

I also have tried every trick in the book and nothing seems to work for me. All I seem to be able to do is to make myself even worse by eating foods outside of my pathetically short almost acceptable list.

If I ever find a solution to my problem I promise that I will contact you immediately.

Will be thinking of you tonight,

Joyce

ps My gluten sensitivity diagnosis is from Enterolab as well

[DigiSage]

mushroom: first, let me thank you again for your advice. I did not mean to seem ungrateful. And I also realize how frustrating it is to try to help someone and have it seem like they don't even want to help themselves. However, I am not that person. I may have come across that way, but I did not mean to. What I'm trying to explain is that due to the fact my mind is so clouded by my own stomach pain and ridiculous diet, and that I've tried everything I can possibly think of, I feel that I lack the necessary mental fortitude to effectively address this problem on my own. This is not me "giving up", it's me realizing that I need extra help. As in, I need another human to take on some of the load for me, because I'm unable to do it myself. In order for me to stick to a diet, I need to realize believe it's going to do something for me, or I simply am unable to do it. As I've tried eliminating food after food after food with zero permanent results, it's difficult for me to "believe". Test results change all that. Also, you suggest enterolab to me, which is odd because I've already posted in this thread (twice, I believe) that I took every test they offer, and that they were the people who told me I was gluten and soy sensitive.

EJR: I'm very glad to know that someone else exists with my exact same symptoms and situation, though I'm also simultaneously sorry that someone else is suffering the same way. It's unfortunate that you haven't found anything to help It's been a good couple of hours since my 980mg of simethicone and I can confidently say it's truly done nothing, even though this is twice the maximum daily recommended amount. I checked the other ingredients in the pills and I don't see anything suspect and, of course, I only started trying it once I developed these symptoms. I do hope to hear that you've found a solution some day. I'll try to contact you if I ever figure out what's going on with me. BTW, I'm 26 years old.

[mushroom]

I am sorry I missed the part about your Enterolab test. I am also sorry you are feeling so overwhelmed by this disease It can make one feel very depressed and a bit hopeless at times. But somehow or other we have to soldier on (and hope that the light at the end of the tunnel is not a train ) I suppose I was a bit hard on you, but most of what I said is sadly true. I tell my doctors what is wrong with me and what to test for, not the other way around. They are not very educated in all the manifestations of this disease so we have to be better informed so we can inform them.

As I read back over your post you have been gluten free for only about a month, which is a very short time in terms of healing. I do think you should maybe stick with the digestive enzymes a bit longer and give them a chance. Find a kind that you can take with each meal. Has your doctor tested you for other nutritional deficiencies?? Vit. D, B vitamins including B12 and folate, ferritin (iron), calcium, magnesium, zinc, potassium? These deficiencies are common with gluten intolerance because your small intestine has not been absorbing what it should. If not, it would be good to know that these are okay. Deficiencies in any of these can often affect your sense of wellbeing.

[Wolicki]

digisage,

I had the same problem when I went gluten free. I was never bloated a day in my life until I started the diet. I found that I had developed numerous secondary intolerances while I was healing. I am still healing, but it is soooo much better. I've been off gluten for 6 months, and rarely have that gas pain. Your intestines have been through a lot, and I think your innards have to "re-learn" how to process things.

I had to give up: gluten, dairy, rice and all grains, corn, broccoli, cauliflower, nuts, seeds, tomatoes, potatoes, eggplant and peppers. I thought dairy would be the hardest, but it was tomatoes I mourned the most! Gradually, I have been able to add things in. First dairy, then rice,corn and now YAY cooked tomatoes, but not raw. I was never a huge fan of broccoli, so I haven't tried it. Potatoes are ok in small amounts. I got glutened before Christmas, so I am having issues with dairy again, but I am sure it will come back again.

The gas was so bad before that I would lay in bed and cry. My point is that I agree with mushroom, you have to take charge and simplify your diet. You can do it. Remember what is was like pain free? Isn't it worth not having some foods for a while? For most, it's not forever. Start with a very basic diet free of dairy, gluten, soy, corn, nightshades, nuts, eggs and shellfish. Do that for a few weeks, then add foods back one at a time. Good luck and feel better!

Janie

[Sarah.e.may9602]

Hi,

I know this was written a long time ago, so I was hoping if anyone has had any progression with their symptoms and treatments? I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? Any thoughts would be amazing, thank heaps