How I have improved my IBS & any suggestions for me would be great!

Digestive health
1

Hello,

Right im going to try and keep this brief. 4 years ago i started having stomach issues, after all the usual NHS tests im told its IBS. Like you guys its impacted my life quite a bit and still struggling although I have managed to identify some of the triggers and things I have done to reduce symptoms.

1) Go Gluten Free - I started this diet a while back and the difference is massive. Less bloating, morning urges went, stomach feels more settled.

2) Cut out processed greasy food - I stopped eating pizza's, currys, chinese...etc.

3) Cut out beer - This made a massive improvement. I used to be able to drink whatever alcohol i wanted and my stomach would process it no problem...until i got IBS. Anyway, I tend to drink cider now and stay well clear of lager. Dont drink on an empty stomach.

4) Lower sugar intake - This by far has been the biggest improvement of my IBS EVER! I started reading a few articles and thinking about what changed around the time my stomach issues occurred and began to think and realised I consume a hell of a lot of sugar in my diet. I cut it out...all out at once. God I felt soo tired, thirsty, dizzy...like I was hungover for weeks. I was going to work feeling dizzy...BUT...this is what happened...

+ Diahrrea stopped burning and smelling soo foul. Stools were not loose.

+ Stomach rumbles and bloating stopped.

+ Headaches stopped

+ Brain fog stopped.

+ My sleeping pattern has improved.

+ Morning 'rush' to the toilet stopped.

+ I have loads more energy, focus and just generally feel better in myself.

5) Probiotics & vitamins. I have found taking 1 probiotic capsule a day, with a good multivitamin plus zinc has also helped. I dont have a great deal of knowledge on vitamins and cannot prove that they have worked, but following the article I read about quitting sugar and the success I had mentioned above, I thought the vitamin route would also help.

I hope this helps. So now for the bad bit...

With everything going on mentioned above...I have been 99% normal for over a month (something that has never happened before whilst having IBS) however last week when I was away things took a turn and I had an 'attack'. Things have been a bit hit and miss since. I think its dissapointment more than anything as i was convinced i was on the path to recovery.

Any thoughts or suggestions for further help would be great. I do have a couple of things im thinking about doing 1) taking VSL3 probiotic (seems highly recommended) & 2) taking enteric coated peppermint oil capsules. Whether this will work or not who knows.

IBS fustrates the hell out of me! Let me know what you think!

Thanks

2

What/where did you eat or drink whilst away?

I think what you are doing is overall good for your health, removing processed food etc, but it blows a hole in the food allergy theory doesnt it!

Its all designed to make you think your doing something wrong when its the chemical additives in our food and environment which causes it.

Try remove the flourine and chlorine from your ingestion. Stay away from cleaning products...those pesky industrial enzymes. Toothpastes, Shampoo! Stomach bacteria is the chemical factory for the body and your under constant attack from chemicals.

Peppermint oil will help. Meberevine is an aid when it gets troublesome.

3

Your symptoms are classic Coeliac disease.

Ask your GP for the blood test - but you will have to go back to eating bread and gluten containing products for at least a month first or you will get a negative result! That is the bad news but it is well worth it to getthe correct diagnosis - Coeliac UK will tell you that most folk told they have IBS often have the Coeliac condition. If diagnosed with Coeliac disease you will of course be entitled to bread and flour on Prescription...

Once diagnosed officially you need to stick firmly to the gluten free diet to keep your gut healthy (and joining Coeliac UK for about £10 a year you will receive a Directory which will help you find products suitable for you - as so many contain gluten that you would never think of - you even have to check packets of crisps and grated cheese!)... but to get well it has to be total exclusion of Gluten.

The villi in your intestine pull back into the gut lining if you are Coeliac and thus you do not absorb vitamins and minerals ....which can be life threatening eventually of course. Just the tiniest amount of gluten can cause this to happen so it is important you have all the facts available - see Coeliac.org.uk - do check this out! Coeliac disease is an auto-immune condition - not an allergy - remember this.

Coeliac disease often shows up by low iron levels and aches and pains in bones and joints as well as the symptoms you mention. Sometimes a broken bone or ulcer will not heal - because of course your body is fighting itself due to the gluten intake.

I went through all the other processes you tried before finally finding an enlightened GP who referred me to the Gastroenterologist at Queens Hospital, Nottingham. Just by talking to this guy he told me he was

95% sure what the problem was....in those days only the gut biopsy was available .... I had this which verified his diagnosis. I was down to blood transfusion level in the iron department by then! Because my iron store was so low I had to have iron injections for 6 months and by then my gut had recovered enough on the Gluten free diet to start absorbing it again....it took me 18 months to start feeling better and get my life back! I later had a bone scan and had to take Calcium and Vit D for a couple of years due to low density in my hips. I still take Vitamin B vitamins which help a lot. But I do feel well!

Do not give up on getting a diagnosis - ask for a referral to a Gastroenterologist which is the safest option!

The fats and sugars you mention are usually products mixed with wheat flour (pizza, pies, cakes, biscuitssauces, gravy, etc)...not to mention beer....all contain gluten....so take this into consideration.

But remember there are lots of gluten free foods available these days - as well as lagers and beers!

Ilumi foods are excellent - and you often get a couple of free beers with it...check their website. Supermarkets have Free from shelves and freezer areas...so do not despair.

Life can be great on a Gluten Free diet - believe me it is worth it...go back to the GP and quote NICE who Issued new Guide Lines to GPs on referrals re Coeliac Disease - to consider this condition earlier in diagnosing to save folks years of ill-health! On average it has taken 14 years for patients to get their diagnosis so you have to persist! They should be more aware these days....("should" would be in italics if it allowed on here smile ) !! Good Luck.

4

I mentioned a product and link in my first reply so it may not be posted. The bottom line is...go back to your GP and ask for the blood tests for Coeliac Disease - and a referral to a Gastroenterologist.

Also Check out Coeliac UK website for lots of information which will help you.

Wheatflour and gluten could be the only problem you have - as of course most sugars and fats are mixed

with this - pizza, pie, cakes, biscuits, sauces etc.....Many folk have been diagnosed with IBS when they have

Coeliac Disease!

Eat gluten containing products for a month before a blood test or it will come back Negative!

5

I contracted C Diff whilst in hospital last year. As a consequence of that I have now been diagnosed with IBS, which has had a huge impact on my life. My gastro consultant has referred me to a dietician who I will see next month he also told me that the FODMAP diet helped a lot of people with 'gut disorders' plenty of info if you Google it and I can highly recommend a book on the subject which explains the basics and contains food lists and recipes. Please feel free to contact me for details.

6

Thanks for the reply.

When I had blood, urine, stool tests and colonoscopy everything came back negative. At the time I was consuming gluten. I'm not convinced with the coeliac thing. I can also handle gluten (or whatever affects me) to a certain amount without real issues.

Il have a look into the FODMAP stuff, thanks.

7

You need to ask for the specific blood test for Coeliac disease....the other tests you had would not identify it.

Please do look at Coeliac UK's website for more information. Until I had been on a gluten free diet for a couple of years my body had become accustomed to dealing with the gluten as far as any tummy upsets were concerned....now if I have it I am really ill - vomiting as well with an hour or so of accidentally consuming it.

There are so many different symptoms...it is a strange thing to diagnose but well worth going for the test.

However, you do need to eat gluten as the test identifies anti-bodies etc. Talk to your GP again - and get your iron levels checked too....don't take any supplements until you have been checked for Coeliac disease.

It should be one of the first things tested for these days. If there is a Coeliac Group local to you I am sure it would be an advantage if you talked to them as well.

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https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/

Here is a link to give information about Coeliac disease, symptoms and diagnosis from the Coeliac UK website. Hopefully patient.info will see fit to publish it as it could help so many people who will otherwise suffer for years and need more GPs appointments in the longer term....

Undiagnosed Coeliac disease raises the likelihood of bowel cancer and other health problems....yet after only 5 years on the gluten free diet their risk level drops to the norm.

Emis Moderator comment: Sorry for delay in approving this but there is also a leaflet here https://patient.info/health/coeliac-disease-leaflet

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In case the link I posted is not allowed - here are some of the contents which can be found on the Coeliac UK website:

"Screening for coeliac disease:

People can have coeliac disease and yet show no or few symptoms

Screening can help diagnose coeliac disease earlier

Close relatives of those with the condition should be offered screening

Coeliac disease must be screened for before irritable bowel syndrome (IBS) is diagnosed. ! N.B.

Screening for coeliac disease - There are certain factors which can suggest a person may have coeliac disease, even if they don’t necessarily have symptoms – in particular if they have a close relative with the condition. Screening people can help diagnose the condition earlier and so start treatment earlier.

NICE has advised that people with close relatives (for example father, mother, son, daughter, brother, sister) are at increased risk of coeliac disease and so should be considered for screening. This would involve going for a blood test and a gut biopsy.

If you suffer from the symptoms of coeliac disease, you should discuss your concerns with your GP, who may then offer you a blood test.

NICE has advised that your doctor should also offer you a blood test if you have:

Type 1 diabetes

other autoimmune thyroid disease

dermatitis herpetiformis

irritable bowel syndrome (IBS)

anaemia without an obvious cause

certain symptoms related to your digestive system (such as frequent diarrhoea, abdominal pain or vomiting, nausea or sudden weight loss)

close relatives (parents, children, or brothers or sisters) with coeliac disease

if you are tired all the time

or for a child who is not growing as fast as expected.

Irritable bowel syndrome

Almost a quarter of people with coeliac disease had previously been told they had IBS or were treated for it before they were diagnosed with coeliac disease, according to recent research.

It is important that the NICE Guidelines are followed and that coeliac disease

is screened for before a diagnosis of IBS is given."

Please share this information to any who might benefit from it.

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Thanks for the information.

Strange really, how the body can process without and issues for years, then for whatever reason messes up.

Does anyone know how to sort out the anxiety side of IBS aswell? I need to address this aswell.

Thanks

11

Stress and Anxiety can be caused by the physical reactions taking place within your body - if you are undernourished and getting weaker you are definitely under stress. It is acknowledged as a part of the symptoms of Coeliac disease....and often not knowing what is wrong with you of course.

Ned - I was in my early 40's when diagnosed. My cousin was diagnosed a couple of years ago and she is in her 80's....diagnosis often depends upon the up to date knowledge of your GP....! And whether they are prepared to allow basic foods like bread and flour on prescription...which you get if diagnosed....

12

Ok so assuming I'm coeliac, I can prove it through diet? I can have a diet rich in gluten for a set period of time and note my symptoms . Then have the same equivalent gluten free diet and note my symptoms? Compare the 2? Or just start from now strict gluten free diet?

Got appointment at the hospital to see a gastroenterologist. My vsl3 probiotics came through today so will see how they go!

13

Excellent - the Gastroenterologist is a good start Ned!

NB Do not cut gluten out of your diet prior to all tests being completed.

See Coeliac Org UK website for details under Screening...and lots of other info.on IBS.

To get an accurate diagnosis for Coeliac disease - when tested by your GP, or now...hopefully...the Gastroenterologist....you need to have been eating gluten containing foods at least during one meal every day

ie a few slices of any sort of bread made with wheatflour, barley or rye (which contain gluten) - and other foods likes normal cakes, biscuits, puddings, pies etc. for at least a month prior to the test - preferably 6 weeks..

Most people will have been doing this anyway.... unless they have tried to cure themselves by eliminating gluten from their diet....unfortunately gluten is in so many things they actually continuing eating it without knowing....so don't get much better! (eg Gravy powders and sauces...just for a start!)

However, in your case just continuing eating as normal but ensuring you eat some extra bread or anything containing wheat flour every day until you see the Gastroenterologist. You should then be able to have the blood test almost straight away and ensure a more accurate result.

A blood test will indicate via anti-bodies in the blood whether you have Coeliac disease or not. You may also be offered a gut biopsy but that will be decided by the Gastroenterologist.

The important thing at this stage is to continue eating gluten - even if it makes you feel worse....otherwise you may get a False negative. Most people are afraid of feeling worse but it is worth it for 6 weeks as it may be the only way to get diagnosed and feel better in the long run.

Even if you are not deemed to be a Coeliac the Gastroenterologist should be able to offer you ongoing advice and care. You will see via the Coeliac UK website that they are finding out more about it, and IBS, all the time.

I am a great believer in Probiotics as well....though it is nothing to do with Coeliac disease...however anything which kills bad bugs in your intestine is beneficial to general good health!

Even on a gluten free diet I enjoy a gluten free ginger biscuit or two for digestive comfort....some of these things can help everyone....even diagnosed Coeliacs!

Coeliac disease is not an allergy it is an auto-immune disease - but if you have it and get onto a totally gluten free diet (not that difficult actually once you are given the facts via Coeliac UK and a Food Directory) then you gradually get better .....and your life back!

It has to be worth a try, that is my point.

However one step at a time now - see the Gastroenterologist first.

Good Luck.

14

PS If you have not been eating plenty of gluten for at least 6 weeks prior to seeing the Gastroenterologist you do tell him this! He may then wait until you have, to ensure an accurate result. This is very important.

A pint of beer today perhaps?! smile