I’ve had celiac disease for ever it seems like but only went gluten free the beginning of this year. All my symptoms were always blamed on not eating a controlled gluten free diet. Now that I am GF, the stomach issues are worse and they say it’s IBS-C. I’ve had a lot of problems with constipation, trying every medicine you can think of without great results . I recently started Motegrity with positive news so far.
My problem is the bloating, distention, and cramps along with the Constipation. It’s so bad and uncomfortable, even affecting my breathing. I’ve tried the low Fodmap diet, which I did struggle with but that didn’t work. I found some serious triggers, but also nearly everything gave me issues, low fodmap or not. Since then my symptoms are worse and now everything is giving me symptoms, all day every day. I’m sure I have SIBO but of course can’t get the test from my primary care AND she wants to cure the constiipation first before treating for sibo (without test confirmation).
I’ve never been cured from constipation so now what?
my stomach is just so inflamed I can’t find any relief. Do I push for the SIBO antibiotics or what? Just miserable and looking for help!
Suggestions for relief are welcome!
Thank you!
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IBSsucksallthetime
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Thank you, peppermint tea helps some, how do you make the ginger tea palatable? It’s not a flavor I use often but did just buy a huge ginger root for trying!
It's on Amazon.com; some people got it from UK with free shipping (Amazon Prime?). Good luck - you can see from the reviews some people love it and others don't, so just order one box first.
I'm exactly the same, so I feel your pain. Sometimes I am so bloated it seems to press on my diaphragm and makes breathing difficult. Everything seems to make it worse, even water.
I went to my GP 2 years ago and they tested me for ovarian cancer (bloating is a symptom) and when the CA125 test came back negative, I was prescribed Fybogel sachets. Useless.
Realising there was no help forthcoming from the NHS and desperate to discover WHY I am so bloated (despite eating low FODMAP etc) I researched causes and found out that there are places to get your own SIBO tests done, without referral from a GP. SO much quicker than messing around through the NHS. The test cost about £170 but I felt it was worth it, if I could find out if SIBO was my problem.
A couple of weeks ago I got my SIBO breath test results back and I have tested positive for hydrogen and methane. Whilst not overjoyed that my test was positive, I AM relieved that I have found a cause for my distension, bloating and discomfort and I will be working with the clinic's recommendations to try and eliminate the cause, in my gut.
My follow up appointment cost £208 ( I know, it's a lot but I feel I have to try and get to the bottom of my problems). My contact at the clinic is Olga Hamilton. I chose her because she specialises in thyroid/ diabetes etc. In the coming weeks, we will be working together trying to find out what works for me.
In the meantime, I have read about Atrantil. I haven't tried it, but reviewers say that is has helped their constipation.
I also bought a book "Sibo made Simple" by Phoebe Lapine which is helpful as it contains explanations as to what causes SIBO, various options of treatments and recipes to help heal the gut.
So far, what I have learned from the clinic is, that antibiotics are not the only course of action. In just one telephone consultation, I was given more useful information than I would ever have got from my GP or referral to a gastroenterologist. I have no faith in either of those.
I am on a pension, but I feel that my health is worth investing in. I don't want to live my final years feeling so awful ,when for some financial outlay, I could feel better again and actually enjoy the time I have left.
If you can afford it, I would definitely try ibsandsiboclinics.
Yes, thank you! I’m sorry you are suffering so! I believe the ibs or sibo clinic I checked was out of test till late September but am definately looking into it and all those other options as well. I’m in US and I do remember seeing the sibo test was over $200– which is a lot I agree! However like you even on a budget if I can find an answer then I’m looking for it, which is why I have joined this group- to look for alternatives that have helped others, because I feel my drs and the others I’ve seen just don’t help! Today I bought some digestive enzymes to try with some probiotics, and am hoping to see a difference!
Thank you again and hoping you get relief ( and if you do let me know what helped, please!)
Ah, sorry I didn't realise that you weren't in the UK. I wouldn't have recommended a clinic in England, if I had.You are right about doctors not being interested in helping.
I hope the digestive enzymes and probiotics help. No fun, feeling like this, for years, is it!
If I do find anything which helps, I'll definitely share.
I agree that you need to work on the constipation first. Having food hanging around for longer than it should is likely to lead to bloating. By having to go gluten free you may not be consuming enough fibre. If this is true, you may need to increase your sources of gluten free high fibre foods. Some can be added to breakfast cereal. If you don't normally have any of the below, add one thing at a time and in small quantities initially (only making changes every 3 or so days) and keep a diary of your symptoms each time you add a new item.
High fibre options include:
1 tablespoon of ground flaxseed (starting at 1 teaspoon and increasing at 1 teaspoon every 2-3 days until you reach 3 teaspoons i.e. 1 tablespoon)
2 tablespoon chia seeds (soaked in cereal milk or some form of liquid for 15 minutes prior to consuming) - again starting with a teaspoon at a time
8-10 prunes
Nutribrex (a high fibre gluten free breakfast cereal)
Quinoa
Buckwheat Pasta
Potatoes with skins
Hard pears
Dried Apricots
Raspberries
Oranges (contain a natural laxative)
2 kiwi
I have IBS-C and in terms of fruit I worked my way up to 8 prunes with breakfast, 1 orange or 2 kiwi before lunch and Raspberries or Dried Apricots or Pears before dinner. You may not need this much!
I take 30 drops of ginger extract before bedtime to aid motility. You may need to work up the dose to say 7 drop increments each night.
If you are finding it hard to tolerate the extra fibre in terms of pain, try Alflorex probiotic, which has been scientifically studied for IBS. This has made me more tolerant to different foods and increases in fibre. Sometimes IBS pain is due to a gut bacterial imbalance. Beyond that there is Linaclotide (which I am also on) which calms intestinal nerves and speeds up transit. This would need to be prescribed by a doctor. Though I would try to Alflorex first.
Failing all else there is Optifibre, but read the instructions carefully since you need to work up the dose and you may need less than they say. Sometimes a bit too much can give you gas, so you need to find your level. This is where the diary becomes important.
Exercise can help with BMs. The government recommends 150 mins of moderate exercise (e.g. walking as if you are late for an appointment) or 75 of intense exercise (e.g. jogging) per week. I also have a bit of a walk around straight after breakfast to get things moving.
You need to ensure that you are drinking enough fluids (2 litres of fluid per day).
There is some good advice about constipation here:
In terms of SIBO, there is no accurate test for it. I was misdiagnosed with this (not by doctors). The treatment regime the nutritional therapists put me on was brutal, it undermined my health and made my condition far worse. My gastroenterlogist said that true SIBO cases are rare.
Wow thank you for all the info! I had been doing fiber but the MD said maybe I was getting too much. I am now intolerant to oats, chia, and flax! (I love all 3!) I wanted to try some probiotics but have no idea about those so didn’t know where to start. I will definately be trying some of your advice, thank you again.
If you are in the US or somewhere other than the UK, Alflorex may not be available there. The equivalent in the US is Align. The bacterial strain that they both have is Bifidobacterium infantis 35624. This is the strain that has been tested for IBS sufferers. It is a strong strain that can help fight off pathogens (a dominance of bad bugs) in the gut. It is the strain that is passed from mother to child during the birthing process, priming the infant's gut to help it fight infections.
Additionally, Linaclotide is also known as Linzess (or Constella in the UK).
Thanks again, Linzess is the only thing that helped up until. Ow, but unfortunately I had to take a dose that’s either too high, or not enough! For me it was like all or nothing! I’d either not move my bowels with the lower dose -or even mixing them, or go 10-20 times a day with the higher dose, in which I never felt emptied at all and my dr said it was just (overflow diarrhea) and too many Movements. Checked into align today, again. My concern is if it has only 1 strain, does it help to tolerate the other things? I ended up trying enzymedica Digest spectrum, but was also considering Enzymedica Digest basics with probiotics, will see if that helps with what I’m eating before doing the allign
Sorry to hear about your experience with Linzess. The one strain is fine I believe. I've read that multiple strains can end up competing with one another. The thing that can give the symptoms is the pathogenic bacteria. Bifidobacterium infantis 35624 is a strong strain that can help fight against pathogenic bacteria. Once the bad bugs are under better control, the symptoms should reduce. However, I know the gut can store a 'memory' of the gut infection. Although I can tolerate a much wider range of foods, there are some that still give me symptoms. This 'memory' is one of the things that researchers are working on. Once you can tolerate a wider range of foods, it is this wider range of foods that helps develop bacterial diversity in the gut. It is the self developed bacterial diversity that can additionally guard against IBS. However, it is getting your gut into a state whereby it can accept more. Unfortunately, as IBS symptoms get worse, what a person eats reduces, this reduces bacterial diversity, thus making IBS worse too. This is what happened to me.
I definitely see how that can happen thank you! The more my symptoms get worse the last I’m able to eat which means that my body isn’t getting the bacteria that it needs from those things. The doctor finally started me on some anabiotic‘s today for Seebo and hopefully those will help so that I can at least eat a few more things and not have the bloating and then I can work on what strains I need! thanks again!
Was it Rifaximin that you were given for SIBO? If that doesn't help, it is worth considering the fact that you may not have SIBO. The worst mistake I made (that was suggested to me) was to keep on destroying my microbiome thinking I had a bad case of SIBO when I never had it in the first place. I tried Rifaximin and it didn't help. The nutritional therapists kept me on natural antimicrobials beyond that for some time. I got very sick from this, totally lost all of my confidence and they really messed up my gut. I wouldn't recommend continuing to treat it as a case of SIBO if you don't respond to Rifaximin. I additionally had Neomycin antibiotic for methane bacteria. Neither helped.
I’m sorry those didn’t help! No, unfortunately my insurance won’t cover it until I try another antibiotic first. I agree not to destroy my system. I bloat within 5 minutes of eating. Or drinking. I have a problem with vomiting also, always undigested food or drink, it just gets stuck. No sign of any narrowing or strictures during endoscopy. I think the key is going to be microbiodome testing, but of course nothing is covered there either. The testing would determine what antibodies are over abundant or need more, as well as flora, fungal, yeast, enzymes, etc. everything in there! I found a program however the cost is very extreme and my budget won’t allow for it. I really think it would work though.
I have IBS-C also. Constipation problems since childhood...
Right now things are going well, but I'm eating things that seem to help. Every day I've been eating melon at breakfast and well cooked sweet potato with dinner. Not much sweet potato.
Also, Ive been making oatmeal cookies with raisins and eat several each day. That really helps me. I have to watch how many I eat though because too much of anything seems to lead to an attack.
I knew I was sensitive to gluten for at least a year before I went gluten free. Since I was already nightshade free (joint/muscle pain) I really did not want to skip the wheat too. And it took a few years to sort out all the gluten as I learned more about it.
My husband has oatmeal for dinner every day which gets good results. He also has melon with breakie. This routine works for him. When it isn't melon season, canned or other fruit works but not as well.
I also eat one prune a day before breakfast. But it takes that plus the other foods I mentioned to work for me.
I just remembered that for the last month I take about 10ml of plain Milk of Magnesia first thing in the morning. I get a little Mg that way too.
Thank you! I may try the smaller dose of MOM every day, as I only take it when I really need it now, about every other day 60 ml. I’ve developed an intolerance to oats which is pretty severe, even GF oats so can no longer do those, but can definitely try some melon so thanks again, I appreciate the reply❤️
If you do not take magnesium supplementation, look into what Dr Mercola says about it. Most people are magnesium deficient, and this can cause several health issues that could be resolved with supplementation.
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