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FODMAP Diet not working for me - what now? Perhaps I don't have IBS?

I have been on the FODMAP diet for 5 weeks now under a NHS dietician. Unfortunately it doesn't seem to be working for me. I have IBS C and wonder if it is better for those with IBS D. I have been suffering with an uncomfortable stomach for over 10 years which is at its worst first thing in the morning, before it is time to get up. This happens every morning without fail, but some mornings are worse than others. I seem to accumulate a lot of wind in my stomach and hoped the FODMAP diet would help with this, but no luck. During the day I can usually get on with my life although my stomach can feel uncomfortable at times. Currently the pains in my bowel are very low down and sometimes low on the lefthand side. I had a scan a few years ago to check for ovarian cancer but fortunately no sign of this although a 3 cm cyst was detected on the right ovary, but this gives me no pain. The gastroenterolist I saw this year decided I had IBS and didn't want to do tests such as colonoscopy. I wonder if this is not IBS and something else that has not been detected. Possibly diverticulitis which my mother had, but I know you can't do much about this. Can anyone suggest something else to try now that the FODMAP isn't working please? Does anyone else have the same symptoms as me and if so have you found anything that helps? I am 67 and really don't want to suffer with this for the rest of my life!

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Have u thought u may be food intolererant? I just paid to see a allergist and found out im gluten dairy and yeast intolerant and i made massive difference to me

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Could your IBS be stress or anxiety related? This can affect IBS even if you are following diet and taking meds. Have you tried any meds i.e. Mebeverine. Have you done a stool sample to check bacteria etc? Thyroid checks etc? X

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Thank you for your reply. I don't think my IBS is stress related, although I definitely believe stress can affect your health. I haven't tired Mebevrine or had a stool test, but could do so. Have very recently had thyroid checked and that was ok.

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I have a similar problem and is caused by air swallowing associated with anxiety. Dr John Hunter a gastroenterologist At Addenbrookes Hospital writes about this in his book IBS solutions. He is a recognised authority on gut problems. He believes that only 50% of ibs causes are down to diet and the remainder seldom examined. Using his carefully constructed questionaire you can find the reasons for your symptoms. This book has been mentioned many times on this forum but not so much recently. I think it costs about £9 on amazon.

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Yes its a great book!

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Thank you for your reply. I havent heard of this book and will try to get hold of a copy. Good to know someone is working on problems of the gut as so many people seem to suffer and can't find solutions.

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I feel the Fodmap diet is more suitable for IBS d, there isn't enough fibre in it for me. But I take elements of it i.e. no garlic or diary ( goats milk if I do) cut down on gluten.

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Thank you for your reply. When I come off the FODMAP diet I will be introducing groups of foods gradually and see if any of them make me worse - in which case I will of course avoid!

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Hi Patricia

I was recently diagnosed with IBS C & had an upper endo & colonoscopy which I would be asking for if I was you. Had my procedure & histology was favourable of Crohn's disease! My gastroenterologist is not convinced as I don't have the typical diarrhoea. It's very confusing & frustrating trying to live normally with bowel issues. A colonoscopy for you would at least rule out diverticula which can be serious if left untreated.

Good luck x

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Thank you for your reply. If I can't find a solution I will go back to the doctor and insist on tests - he was reluctant to give me any as he seemed convinced it was IBS. Bowel issues are very confusing as there are so many different causes. Probably like everyone else I have googled like mad, but not come to any conclusions as to my particular symptoms. I wish you luck with your problems.

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I tried FODMAP and it worked a bit but not completely. I now follow Fast Tract Diet which entails lowering your amounts of fermentable carbs like the low FODMAP, but also lowering fibre. It is really working for me and it is no way as difficult to follow as low FODMAP because no food is banned, you just limit the amount you have. You can buy the book and an App (which I find really helpful) but to get an idea of what it's about you can look at the website and the FAQ digestivehealthinstitute.or...

Hope this helps. Your symptoms sound really like mine. I'm not 'cured', I will probably always have to eat this way but it is doable. If I intentionally fall off the wagon I get symptoms but at least I know what caused it and how to fix it again. Life and eating is much more pleasurable.

Good luck

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Thank you for your reply. I haven't heard of this diet and sounds interesting and worth trying, especially if it's not as difficult as the FODMAP diet as I'm not finding following this easy - especially when it comes to eating out. If my symptoms could be eased a little it would help. I have given up the idea of a magic wand!

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Get yourself some Mago7, by Aerobic Life...no cramping, u can use daily...I am 65, and do fodmap, but I am dairy free too, and just discovered Salicylic Acid Food Sensitivities...wow, if you have a problem with aspirin or nsaids look into this too. But the Mago7 is the best, Vitacost sells it, Vitamin Shoppe...just read the reviews...I have never looked back, when we get older I guess this is part of the fun! My Aunt warned me, I wish I could have told her about this, along with my Mom...it never fails, follow directions, I take mine 2-3 hours after eating at night with a big glass of water. Right now I am changing diet due to that Salicylic sensitiviy, and am taking three capsules...I will most likely go back to just two, but the medication I am on must be constipating... omeprozole, hate it, feel like this hump is almost over, and I will go off of it. I never knew of these Sensitivities, and was eating every fruit, nut, vegetable, and nut milk that was on the very high list!

The new SIlk Nut Protein milk was the straw! I went into radical gastritis, and constant flooded sinuses with clear buckets of mucus!

It has been almost a week, doing better. But if it was not for mag O7 I do not know what I would do! Here is their # 1-800-798-0707...start out slow ...maybe two capsules, I have never taken more than 3.

My best luck, I think u will like it! 🍀🍀🍀

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Thank you for your reply. Haven't heard of Mago7 but willing to try anything that might help. Glad you have discovered ways to help your problems.

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Mago7 is great stuff. I am suffering right now with this high Salicylic Acid sensitivity, and a lot of these things are allowed on fodmap, and I do not do dairy which is also allowed on it. I also think age and stress has a whole lot to do with it. But for constipation hands down Mago7 is the best thing I have found, and I have been working on this for a long time. I have lost 50 lbs., My blood work has never been better...but I still get issues, and they have really kinda wrecked my social life! I ate my own guacamole and had very minimal allowed alcohol on the fourth, and I am still suffering! I might as well realize I cannot be my old self at all, and eat only what my body dictates, and it really sucks....there is not one answer to these issues, and I think younger people have the same issues, I blame a lot of it on our food supply, and being guinea pigs for the genetically modified food... antibiotic fed chickens, ect, ect. All we can do is try each day is to make choices which we know are ok for us to eat and drink. Water is so exciting! And I drink almost 3 liters perday. Good luck to you, the constipation part is the worst!

My best!

Cheri😉

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It seems you are not in the US, follow that advice on seeing a good nauropath, I am ready to go to a Chinese accupuncturist, who is supposed to be a miracle worker...I have a friend whose husband is a dentist who I worked with, she even takes her kids to this guy, so when my medicare kicks in, I am gonna do it, as my insurance now will not cover it...we will see, but by then I will probably have this under control again.

Again try a naturopath...just make sure they have been around the block! My new doc here is so far amazing me, he understands the Salycitic thing, and gave me a list...so in a week might go see him, older wiser guy, who's a genuine man, who has been seasoned, maybe I will not have to look further?

Best again,

Cheri😁

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I am in the UK. Have often wondered about acupuncture but difficult to know which one to try if you don't know someone who is recommended. I'm sure who you see must make a huge difference. I will research this in my area. Best of luck to you.

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Accupuncture works temporarily. I have just discovered something new for myself...maybe it will help u too?

I cannot take aspirin, and now any nsaids. It is due to Salycitic Sensitivities! When I stumbled onto this by accident, ithink it is a lot of my problems. I was eating every fruit and vegetables on the high list, then Silk came out with this high protein almond milk...so of course I get it! Well soon after I started with gastritis...started researching...almonds are high in Salcin, which is basically aspirin! I was overload with Salicylic Acid! I stopped the milk, switched to soy (really only have once a day with a protein drink), cut back on all my "healthy veggies and fruits", and went to the low, or moderate ones. It limits your choices, and my regular doc even understood this one. All people going gluten and dairy free (which I am, lost 50 lbs, and got my blood levels really great-use to be very high and bad)...but I was still having issues...and I think this is why.

I bet most people at some point when gf/df will have this problem too. I was having really bad gut issues before I did all of this...could been from going to a quack, 8 years ago with a bladder infection. It just coming back, actually 2 quacks kept giving me macrobid, at least 5 to 7 courses. Well one day I was soooooooo sick of this I drank a very large quantity of water, went to, pee,my bladder felt it was going inside out, I heard a loud clink! My only kidney stone in my life, the size of my thumb

Nail! Hesaid wow! This would have killed a man! And then sent me in for an ultrasound. My whole face and head

Broke out in yeast...it took over 5 years for me to clear that, it is now completely gone, so I started the same probiotic I am still on, and

Do to all the GMO crud I decided to

Do the gf/df...which really helped...I do not follow the whole fodmap deal, just cut out things like apples, wheat, peanut butter (high Salicylic) so I blame the antibiotics for most of this, and as writing this long manifesto, realized, I was put on that macrobid 2 x before my recent hemerrhoid banding...hum? I take the Mago7 for the constipation the all has caused me, and that as been a life saver, I read it has the ability to discolonize yeast! And get rid of bad bacteria and toxins.they do suggest taking a probiotic....I am gonna double up on those starting today! Well this could have been a book, and I hope it helped u somehow!

My best to u on this tough journey of quacks, and scams!

Cheri🐞

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PS: if I do not get better in a few weeks I will go to the Chinese doc this one gives herbs, w/ accupuncture. Regular plain accupuncture works temporarily.

We will see🐝

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Thanks for your suggestions - I have actually been having almond milk. Good luck with your problems. I think we all have to be our own detectives.

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Could be a culprit, look up list of Salicylic Food Sensitivities, they have a very good site...blew me me away! Good luck!🍀🍀

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Thank you, I will.

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Let me know how ur doin in a while...it's just so much fun!🌱🐞🌱

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Hello Patricia22. It all sounds very unpleasant and although there have been some very useful comments I would strongly advise you to find a homeopathic doctor, (not a homeopath) a fully trained doctor who has specialised in homeopathy, They will usually spend enough time with you to make a correct diagnosis. Nobody in the NHS seems to have time to really give a problem like yours enough thought; they simply treat the symptoms which is not good enough, you need to know the cause.

I hope that helps; we nearly always prefer to go to a homeopathic doctor.

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Very well said Tibblington :)

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Thank you for the confirmation!

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Thank you for your reply. I have never tried homeopathy as never quite sure if it would work, so good to have a recommendation. I did feel rather fobbed off when I went to see a gastroenterologist as he just decided I had IBS without taking much of an interest. However, I do know NHS doctors just don't have the time to delve deeper. The NHS are very good when it comes to serious illnesses, but not so good with non-life threatening chronic ailments, so I may well try to find a homeopathic doctor if there is one in my area. Presumably this would not be on the NHS?

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Hello again Patricia22, I'm afraid you may well have to pay but it could be worth it also if you have to travel a bit. We live in France and the Homeopathic doctors are very booked up here because so many people are against big pharma etc.

Have a look at: healthscams.org.uk/homeopat... In the U.K. you may well find a doctor by looking on the Internet. Be careful to find a doctor; I am not against homeopaths but they are not trained to seek out any serious conditions like a doctor.

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Thank you for the advice. Will have a look at the link. Yes, I get your point that the practitioner should be a trained doctor. Willing to travel a bit - but not as far as France!

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Hi Patricia22, I agree with Lisaclare, you should definitely should try and have a colonoscopy done. I also have similar symptoms to yourself. I hopefully am going to get one done, I had one booked but I had to cancel, so now going to try and get referred again. The only thing that helps my constipation is soaking 15g milled chia seeds in mug of water over night, drinking the next morning ( not very pleasant to drink ) for about a week or so.

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Hi there bigbunbun, I soak Organic Golden Linseeds in water (I use about a dessert spoonful) and soak for around an hour, this works wonders for me and tastes absolutely fine.

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Hi crazyfitness, I have tried milled flaxseed soaked but not the whole seed, I'll have to try that, thanks.

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They certainly work for me and I also love biting on them (they do not turn into a gloopy mess, just softer when you soak them). I don't always leave them for an hour, sometimes only half that time. They definitely work for me.

Best of luck

:)

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Hi thank you, may give them a try, better than using laxatives, which I find don't help a great deal. Best of luck to you to 😃

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Definitely better than using laxatives and they are 100% natural.

All the very best.

Alicia

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Thank you for your reply. Haven't tried chia seeds, so another thing to add to my list. My dietician recommended linseeds for constipation which I sprinkle on cereal and I think it helps a bit.

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Hi Patricia, I soak my Golden Linseeds in water between 1/2 an hour to an hour and they work brilliantly for me. I use around a dessert spoonful.

Best of luck

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I agree with LisaClare in that the doctor should at least refer you for a Colonoscopy. I have IBS C and am going to try the FODMAP diet. I had a Colonoscopy last year in August (I originally had one in 1996 to rule out anything after a bout of food poisoning and that's when I was diagnosed with IBS), I also had an Endoscopy.

The pre Colonoscopy diet worked really well for me i.e. 3 days before the procedure you eat soluable fibre foods i.e. white bread, fruit without the skin on, vegetables without the skin on etc. The day before the procedure you drink a solution, twice in one day and this makes you go to the toilet - it didn't make me feel ill at all. I have to say that I have never felt so well as I did before and just after the procedure so I am a great believer in that diet plays a large part but also mental health I'm sure also plays a part.

Best of luck and hope you start to feel better very soon.

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Thank him for your reply. If nothing else helps, I think I should try to get a colonoscopy but will try other suggestions first. I will also try to experiment with my diet as although I am following the FODMAP diet, there may be other food items that don't agree with me. Perhaps not just one food, but a combination of foods. I have never been able to pin it down to a particular food, although there are some foods I know I am better off avoiding such as anything that is know to cause gas. Good luck with the FODMAP diet. I know it works for many people.

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Having a Colonoscopy rules out other ailments/diseases so it's definitely worth having one and would also help so that you would know if you were dealing with anything else other than IBS i.e. Crohn’s Disease. I know for sure that raw carrots and onions, sweetcorn are definitely a no no for me as I suffer with immense pain if I eat them. I can only eat very small amounts of broccoli and cauliflower. I have a feeling that dairy may also be a factor but I will know more when I cut that out.

Also, I am reading more and more on the internet that we shouldn't be drinking milk. I have to say though that I really don't know what I should eat or drink these days as there is always something on the news regarding our food and what is good and bad for us. The information seems to change frequently with food i.e. years ago fat was bad for you know they are saying eat the fat but don't eat the sugar and sometimes dairy - where do we go from here!!

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Yes, so much conflicting advice and it changes over the years. Much to be said for just doing our own thing and avoiding obvious personal triggers, but often it is hard to pin the trigger down.

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Thank you for your reply - I'm on the FODMAP diet which excludes gluten and dairy, but doesn't seem to help me but pleased you have found a solution.

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I know how you feel. I'm a 67 year old female that has had IBS since my teens. Always had a bum stomach. Lately things are worse don't know if it's age or the crap they add to our foods. I would also encourage a colonoscopy. I have to have them every year because they always find polyps. Recently had worse stomach pain and found an ulcer. Looking to see if ulcer healed (it did) they found I have silent gerd which irritated my esophagus. I never would have known as had no heartburn symptoms just chronic stomach pain. Also have constipation too. I'm looking into FODMAP diet to see if it helps. Too be honest I have tried many things to no avail. Got rid of wheat and dairy and no relief yet. Sometimes I try dairy and do get worse so I know it's a trigger. I hope you find answers for you soon everyone is different. I keep searching all the time. It is so frustrating. Good luck and stay well.

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Yes, I think I have always had a weak stomach - I suppose most of us have our weak points. Sounds as if I should have a colonoscopy as impossible to see what is going on inside without looking. Good luck in your ongoing quest to find some relief. Very difficult as everyone is so different.

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I so agree with you are the crap that is added to our foods, I think that has a lot to answer for!!

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I also have a suspicion that dairy may also be a problem for me so the FODMAP diet is going to be a good one for me to try. I am so sorry that it hasn't helped you at all.

On saying the above, I ordered some leaflets via email through Mary Roe who is a Registered Nurse Specialist in food intolerance and this is something else I will also be trying. The web address for Mary is below - I think when you suffer with this awful ailment then you will try anything.

foodintolerancesolutions.com

I really hope you manage to find something that works for you but on saying that I don't know whether you have seen posts from Alison Simpson at alison@sickofibs.com. Alison posts regularly on this site and she has cured herself.

Best of luck to you and hope that you find something that helps.

:)

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Yes, have seen some comments from Alison Simpson but haven't yet looked at her website, I haven't been involved with the ibs forum for very long. Will take a look. I was tested food intolerance a couple of years ago, but didn't really help. Do hope the FODMAP diet helps you.

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She certainly talks a lot of sense and I really need to read through her blog more. I honestly think that the only way we can test for food intolerances is by slowly but surely eliminating foods ourselves and eventually finding out what doesn't work for us. I really hope you get a lot out of this forum as I have.

All the very best.

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Thanks for your info. I have heard of Allison and gone to her web site. I am looking at web site you just sent me now. Thanks so much.

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Hope you get on well with looking at the website.

:)

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If you are in UK you can take part in Bowel Cancer screening? If the kit is positive the programme would offer you a colonoscopy. If negative, then you can rule that out and try something else

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Hi there Smoow, I didn't realise that there was such a thing as Bowel Cancer screening. I am assuming by what you have said above that I would be okay as I had another Colonoscopy last year in August.

Thanks

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Thank you for your reply. I do take part in the bowel cancer screening and am pleased to say that so far my results have been ok.

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Hi Patricia!

I agree with lulububs. I tried the low FODMAP diet for about 3 months and while it help a little, I still had issues. I'm IBS-C. I was diagnosed 16yrs ago, and I have learned a LOT over that time. Have you tried giving up all sugar & artificial sweeteners except stevia? I also cannot tolerate any gluten or dairy. I have to be careful with corn syrup or hfcs as well. Gives me terrible gas! I do best on a low (not NO) carb diet and very little sugar, like berries only. When I'm good & I stick to it, I feel great! When I do eat sugar, I feel terrible. It's a very difficult diet to stick to for life!! I often wonder if I have a chronic candida overgrowth :(

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Firstly cut out gluten dairy sugar yeast and any artificially or refund foods. It will take a few weeks for your body to adjust but you will feel the difference. Also take in lots of probiotics - all natural ones fodmap is mainly for IBS-d in my experience. Have you tried doing some green juices ? Www.Coconutandwhat.Com

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Hi Patricia22, I’m a little late to this but came across your post and my symptoms are identical to yours, and the fodmap elimination diet isn’t working for me either. Did you ever find out what was wrong?

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I'm sorry to tell you that I haven't found a solution. Just having to learn to live with it. Never goes away but sometimes it is worse than other times. When it is worse, I find if difficult to pinpoint why. I feel that I must have a very sensitive bowel and it's just my particular weak point. Its a pity that although amazing strides have been made in many areas of medicine, no one knows how to cure IBS! I wish you luck and hope you are able to find some answers.

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Patricia....a good gastro doc WILL run the battery of tests. Colonoscopy, stool sample, blood, body scans, endoscopy. "The only way to diagnose IBS is the 'GOLD STANDARD'

which is the process of elimination." <----That statement came from my gastro. That's aweful if your doc just guesses that it's IBS. What if it is diverticulitis?? It won't kill you, no, but at least you can stop eating things that flare it up. Go back for the tests hun. You won't regret it. :)

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