30 years of IBS and it's changing

[Jooly007]

Have had 30 years of IBS, mainly terrible pain, constipation and horrendous trapped wind and bloating which makes all my muscles ache, is emotionally draining and puts me in bed for a few days a week, nursing a hot water bottle and taking painkillers.

It has become much worse in last few months and I have tried loads of things (colpermin, omeprazole included) and done research and food diary and exclusion diet...all by myself. Went to doctors today to say I was fed up and that IBS is ruining my life...to be told, "I don't want your life story...I'm running an hour behind." Very helpful! I was in tears when I got home. I am scared of eating and have missed events, holidays etc through being ill. I am so swollen that I look 9 months pregnant and cannot fit in any clothes, which is how I am 2 days a week min. Thank god I work from home.

Not stressed at mo, though have had depression for 30 years too...but in brilliant place mentally thanks to wellness and positive attitude and have worked hard to get well and healthy.

Piling weight on but eat less than 800 calories a day. List of foods that I can't eat is getting quickly longer.

Birthday tomorrow and have symptoms today and going to have to eat nothing rest of day to give my belly a chance...and go for birthday meal out (which I dread) and eat the smallest and plainest thing on menu and drink water!

Have just signed up and looking forward to learning some tips and tricks from other people as getting nowhere with medical professional as usual. Fed up being ignored so time to take more action!

[Hidden]

Jooly - think your doctor has misunderstood your symptoms. thepatientceliac.com might help you. As you cannot stop your stomach and abdomen from appearing swollen

these symptoms may be a sign of cysts. I have had problems for donkeys years too and have found tests for multi allergen intolerances helpful which I had done as a Christmas present through the Alphega chain of pharmacists. They have branches up and own the country. It was a simple test, with detailed information concerning your health history.

The finger prick test transferred the blood results to a computer linked system. Within an hour all the results were back and could discuss the results with the pharmacist. To my dismay I had multigrain allergy wheat rye barley rice maize cornflour, egg and dairy banana food intolerances. There were 64 food tests. The multigrain allergens were a major part of my diet from beer malt form barley, bread, lactase in milk. The dairy test shows casein the protein, as part of the dairy test. It's not something you can do yourself.

Gluten is factor for some, in most flour, and this can affect your thyroid function.

If you are hypo you can find it hard to lose weight. If I were you, I would ask for a range of tests for dairy, , egg, and gluten which are the main tests for NHS. I would make an appointment with a nurse first. Having a good chat about the swelling, and the possibilities of food intolerances, might mean you can have an ultrasound test for cysts and tests for celiac disease with referral to a gastrointestinal specialist. This could take

months on the NHS, so the test with Alphaga would not be too expensive - under £71.

I hope you have a happy birthday - as your doctor made you miserable you should go to another one in the practice as he /she upset you. Failing this try the drop in minor ailments clinic in many chains of pharmacies including Boots, and tell them of your symptoms and explain you don't know how to get help. Lloyds pharmicies do a free diabetes test, which may also be screened out. Thyroid tests might also be done.

Think you a bit more help than being told you are wasting your doctors' timexx

[Jooly007 in reply to Hidden]

Wow...Thanks for all of that. Had more support this afternoon on this site than in years through the gp.

Will take all your advice on board and investigate. At least it will help me rule some things out. Thanks so much

[LCat in reply to Hidden]

Doctors have no clue what IBS is nor what causes it and therefore there is also no drug to cure it. Regarding IBS We’re still in the Middle Ages and know nothing about it. The only help is being careful about what you eat. Hawaii 60 is spot on right : I would immediately cut out all grain. Some people have an egg allergy others don’t. Not everybody has a problem with milk products but the wheat and other grains are a nightmare for IBS sufferers. Even for people who don’t have IBS, the multi grain, whole grain diet we’ve been advised to eat for decades (they know now) seems to be the worst advice we’ve ever been given. Also the obesity epidemic started directly after we were told to eat no fat zero fat etc but instead all these whole grain high carb diets. Since that time, not only IBS but also many other diseases also started to increase like diabetes 2 and neurological conditions. Also a whole grain high carb diet also messes with your blood sugar. In the US half the population is prediabetic I read. However you can have protein and fats. All the opposite what we were told for decades. There a lot of literature about this.

[Hidden in reply to LCat]

Everything you say resonates - as I have a multi grain allergy egg dairy egg banana get gout if I eat too much meat, and high cholesterol if I go on the cheese binge - it has taken years to track down all those food intolerances. When I had the test for 64 foods it was a bright light - I was compensating by eating other foods as I have type 2 diabetes but since removing hidden sugars in food and those grain carbs I have managed to get my blood sugar levels down and have lost two and a half stone.

I wish I had had these multi food intolerances done years ago but they did not exist

except if people were referred for celiac tests - I never knew what to ask for so I asked for a gluten test which was normal- ha! Those other grains wheat rye barley malt found in so many foods were not tested for so I was pronounced normal. Then the dairy and the turn to yoghurt, and cottage cheese to help the weight did not work - ha! I had lactase intolerance. Have looked on websites for children with learning difficulties - if they complain of oversensitive skin reactions to certain fabrics, labels they are given a psychiatric label - how many of these kids have ever had a full range of tests to establish if gluten is harming their development? The tests could determine a child's future. Thanks LCat.

[howarddavies]

If your doctor wasn't helpful then try another one. And if they said that to you then you should complain. But don't let it put you off getting expert help. It's better than trying to solve it yourself. Also, if diet is a problem then maybe try to get in touch with a dietician.