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Living life FODMAP free!

April 4, 2012

As I write this I am currently one day away from finishing another course of antibiotics for the bacterial overgrowth in my stomach. Fortunately, unlike the Ciprofloxacin and Neomycin, this latest one (Doxycycline) hasn’t had a severe side effect. As with any antibiotic, my pots has flared up and I’m much more dizzy than normal, and my stomach is in a great deal of discomfort due to the nature of where the antibiotic is tackling the infection, but both of those I can put up with.

Previously, the Ciprofloxacin lead to an allergic reaction and a frightening night struggling to breath, so that ruled that one out. The Neomycin lead to very bad diarrhoea, which left me dehydrated and my pots soon plummeted, so I had to end that after only three days. The clear out caused by the diarrhoea must have cleared the bacterial overgrowth too, because I then had 5 weeks free before the overgrowth reoccured and here I am now, taking Doxycycline. It’s much more tolerable for me than anything I’ve had before, including the Augmentin, but until the POTS side effects of the antibiotic wear off, then I don’t know for sure how successful it’s been at tackling the overgrowth.

On Prof Aziz’s recommendation, I have also started a new diet. A ‘low-FODMAP’ diet. It’s relatively new and something that MUST be done with the guidance of a professional dietician, but so far has made massive improvements to the EDS discomfort I suffer through the digestion of food. Im sure you’re think A low-FOD… what!? I know I did!

It’s basically a diet intended to help those who suffer with IBS (irritable bowel syndrome), but a lot of the EDS symptoms are much the same; diarrhoea and/or constipation, bloating, distension, abdominal pain and discomfort, wind or flatulance. The following details I sourced from a booklet my dietician gave me.

Food is made up of different components, such as carbohydrates which include sugars. Some of these carbohydrates (FODMAPs) do not get absorbed in the small intestine, instead they make their way to the large intestine where they are fermented by billions of bacteria, thus causing wind and bloating. Diarhoea can occur due to an osmotic effect which increases the amount of water in the large intestine.

F- fermentable
O- oligo-saccharides (fructans & galacto-oligosaccharides)
D- di-saccharides (lactose)
M- mono-saccharides (fructose)
A- and
P- polyols (sugar alcohols)
s

Reducing these FODMAPs has been shown to improve gut symptoms. FODMAPs are actually poorly absorbed in everyone, its just that the side effects can be worse for those with IBS, and the side effects are painful and cause great discomfort with my EDS.

Jumping away from the scientific jargony bit. FODMAPs are unfortunately found in a VAST AMOUNT of foods. I seem to spend all my time reading labels looking for words like fructose syrup, fruit juice concentrate. It gets so confusing that I find I constantly refer back to the great booklets that my dietician gave to me.

What do those words mean? Well for a start, lactose free and gluten-free, they’re the big ones that most people will know of. After that, its down to the nitty gritty. Everything needs to be checked; as I can’t even have everyday things like; broccoli, cauliflower, onion, garlic, beans, etc etc. Fruits such as stoned fruits, apples, pears etc. Drinks such as fizzy drinks, cordials with fruit concentrate in them.

Put bluntly, its a bloody nightmare!! BUT and this is big but, eating food and not feeling like you have have a 24hr bug every time your stomach churns and rolls around as it digests the food, or stabs away inside as the gases make their way along the intestine, is, after years of suffering, worth giving up so much of this food!

I had hoped that the diet would also stop the recurring infections, but sadly this is not to be. I spoke with Prof Aziz on the phone last week and I will need to stay on this diet and then take regular antibiotics for the bacterial overgrowths as and when they come. But for the meantime, this diet, although in its early stages, has made a big improvement on my in-between times, the times when I’m not infected.

Its not all bad though. I have found lactose free milk, which is great, and a gluten free spaghetti, which is not as rubbery as some others. I’m getting used to what I can, and can’t have. But thankfully we cook all of our own meals so its not actually that much of an issue. Chives are a perfect substitute for the same flavour that onions would give, but once you look EVERY brand of gravy we have looked over uses onion/onion powder, so my gravy is now made by using stock and thickening it with corn flour.

I even went on the hunt for a substitute for pickle, no word of a lie, we went to a farm shop and must have looked at 30+ different pickles. The poor lady in the shop was helping look…

“apples?” she’d ask

“no I can’t have those…”

she picks up another… “this has garlic..?”

I look up from my jar of pickle, “nope not that either”

“what about this one… oh no, onions!”

There was only one that was ok – thankfully it tastes ok too!

One thing that annoys me is the prices shops charge for gluten free and lactose free produce, its ridiculous!! even for a packet of biscuits! They can’t seriously suggest it costs them that much to make the stuff!? Fortunately I just buy the right flour and bake all of my own cakes and biscuits at a fraction of the price – and I may be bias, but they taste a WHOLE lot better!

I have also seen in my booklet that I AM allowed a small amount of chocolate per day, as it is in fact low in lactose – That’s good enough for me! Roll on Easter.

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