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Anyone out there on the FODMAP Diet for IBS?

(22 Posts)
blue2 Thu 01-Nov-12 11:54:02

I went to see an allergy specialist last night. Had IBS for 25 years. Tried all sorts of elimination diets over the years. Mightily fed up with it all TBH. sad

Now consultant thinks I need to follow the FODMAP diet.

Are you on it? or have you tried it?

Any good?

Many Thanks

freefrommum Thu 01-Nov-12 12:00:13

Sorry, can't help with the FODMAP diet but just wanted to check whether or not you'd been tested for coeliac disease as this is often misdiagnosed as IBS?

blue2 Thu 01-Nov-12 13:07:09

They are re testing me for coeliac disease.

Apparently I have a very low secretory chemical (SigA?) that renders the 'normal' test invalid, so I'm waiting to hear. I've pretty much been off gluten for several years.

As a result of the tests, I will probably have to either follow the FODMAP diet or one that ties in with my allergy to birch pollen which extends to various foods.

Its all very complicated!

eragon Thu 01-Nov-12 13:23:28

yes, i followed it for about 7 weeks, was asked to do 8-10 weeks on it.
however it worked.
pain level dropped dramatically, and now only flares up if i have been naughty. I then drop any irritating type food for a while.

i now only have white bread, and have no problems with that refined wheat.
I can eat baked beans in small amounts and be fine!

I know if i have salad and then more green veg later on my ibs will flare up instantly so I am careful with that sort of combo iyswim.

this plan gave my gut time to heal and settle down, i am aware that i will need to go back on it again .

its difficult to follow, but the results are well worth it. I have been almost bed ridden by the pain and bent double by it at times, after this diet i have never got back to that level again.

do it , and follow it as best as you can.

eragon Thu 01-Nov-12 13:25:26

also, forgot to mention was tested for coeliac disease and and dont have it, have chronic ibs which is now controlled by diet.

good luck.

freefrommum Thu 01-Nov-12 13:34:08

Just wanted to add that you can't be tested for coeliac disease unless you have been eating gluten for at least 6 weeks prior to the test. If the blood test is not suitable then you should have a biopsy but you need to be eating gluten regularly for 6-8 weeks prior to the biopsy.

blue2 Thu 01-Nov-12 21:24:45

Yes, I'm aware that I should have been eating gluten before the test was done. I did tell her and she didn't seem unduly bothered. Not sure if its because this is a different type of test for coeliac because of my SigA levels.

Thanks Eragon for your telling me your experiences. How very interesting you can have white bread - I can only dream of that at the moment!

KatyMac Thu 01-Nov-12 21:29:45

I had my coeliac test on Tuesday & might get the results tomorrow or Monday <gulp>

FODMAP has been suggested if it's negative (in February if the person has been trained by then)

But I know nothing about it

Hoophopes Thu 01-Nov-12 21:34:53

Hi blue2 do you mean you have no/very low IgA levels - if so I have selective IgA deficiency so had to have endoscopy to diagnose coeliac as blood test not work (though have donated my blood to help them get a test for people with no IgA). My lack of IgA has caused lots of illnesses, have you seen a haematologist/immunologist about it? sorry, never heard about the diet, but do know that you need gluten in your diet for ideally 6 weeks for coeliac test to work. People with no IgA have a higher probability of being coeliac - wonder how they tested yours?

blue2 Thu 01-Nov-12 21:40:08

Hoophopes - I had a reading of 15 for my SIgA - normal should be between 400- 880

The consultant I saw is an Immunologist / Allergy specialist.

What illnesses have you had as a result of low IgA levels? I have all sorts of funny symptoms as well as IBS...

KatyMac Thu 01-Nov-12 21:59:07

I'd be interested to know too!

blue2 Thu 01-Nov-12 22:07:43

Well. katymac - we may have to find ourselves a little cozy corner of a thread and debate FODMAP diets in the weeks to come!

Good luck with your results. I have several weeks to wait.

What do you mean about February and training in your post?

KatyMac Thu 01-Nov-12 22:09:36

The dietician is being trained & should finish in Feb so I can be referred to her to go on the diet

I have ME, Fibrmyalg

KatyMac Thu 01-Nov-12 22:11:06

Ooopps

ME, Fibromyalgia, various allergies, lactose intolerant, & what seems to be a very odd reaction to vitamin B

blue2 Fri 02-Nov-12 13:49:24

You look like you're a bit of a medical challenge, Katy !

Have you had the results back?

KatyMac Fri 02-Nov-12 14:33:18

Yep no coeliac

which tbh is a bit of a shame; I like a nice label hmm

What is FODMAP - do you know?

womblingalong Fri 02-Nov-12 14:42:02

My DH is on a low FODMAP diet, and has been since Jan, it has significantly improved his crippling IBS and bloating.

It is a diet where you have to avoid foods with fermentable oligosaccharides, disaccharides, monosaccharides and polyols.

You have to avoid wheat and gluten, onions, garlic, most green veg, except for green beans, most fruit except for berries, citrus and pineapple, all beans and pulses, and a whole lot more.

It is hard, but has helped, although my DH had to give up coffee too to be properly OK.

KatyMac Fri 02-Nov-12 14:48:15

I already eat nothing green except green beans (oddly enough) but if I cut out bread I would starve wink

blue2 Fri 02-Nov-12 19:57:09

Here we go - here's a FODMAP food list. It doesn't make happy reading for me as I use onions, leeks and garlic all the time (but maybe that's why I have IBS?!)
www.ibsgroup.org/brochures/fodmap-intolerances.pdf

Hoophopes Fri 02-Nov-12 19:59:48

Hi - I wonder if they are referring to the same thing? My level is actually 0 so my diagnosis is Selective IgA deficiency - Selective IgA deficiency is defined by the European Society of Immunodeficiencies as
“serum IgA level of <0.07 g/L, and normal levels of serum IgG and IgM, when other causes of hypogammaglobulinemia have been excluded”.

I guess different labs may have different ways of measuring. Has the specialist done an anti-IgA test, to see if you create antibiodies. I had to have this test, because if I needed a blood transfusion then depending on my result if I needed blood it would have to have no IgA in it. (I don't need it as my result was ok)

Lack of IgA is fairly common, 1:600 I think - it means more susceptible to infections in mucosal linings, so respiratory tract, stomach etc. I lost much of my hearing and have damaged lungs due to many serious infections sadly as a child, no diagnosis and just the usual antibiotic regime. To treat it now I have to take a daily antibiotic and if I get ill I have to have a large dose of antibiotics and for 2 weeks.

Hope you get some answers from your specialist.

blue2 Sat 03-Nov-12 14:59:05

My SIgA reading is 15 mg/dry weight... of poo (sorry TMI!)

I'm being retested with my blood samples, so maybe the results you have and the ones I'll get soon will match in terms of their g/L ?

Hoophopes Sat 03-Nov-12 21:38:24

Great you are having more tests - hope they help your consultant and you with treatment. Are they testing you for coeliac with an endoscopy and biopsy, as the blood test will not work due to your IgA levels? People who are IgA deficient have a higher rate of coeliac disease I was told, so you still may be coeliac.

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