February 2006 Archives

I've now been dairy and gluten-free for 10 days, and I remain spectacularly symptom-free. No pain, no diarrhea, no constipation, no nothing. I go to the bathroom once in the morning like a normal person, and then I go about my life for the rest of the day (mostly like a normal person), and then I wake up the next day and do it all again.

So am I ecstatic, blissful, jumping for unbridled joy? No, I'm very worried.

Surely it can't be this easy? Surely, as an IBS sufferer, I can't take a blood test, get the results, follow the advice and get fixed? That is SO not how it works.

No, we as IBS sufferers have time-honored traditions about how these things should be done. The general procedure is to go to a doctor, get laughed at, go to another doctor, get some pills, take the pills, get ill, go to new doctor, get some different pills, pills don't work, new doctor, doctor never heard of IBS, new doctor, new pills, pills don't work, new doctor, doctor says that IBS doesn't exist and that all I need is a holiday by the beach and a psychiatrist, give up, cry, go and live in hut as hermit for rest of natural life.

But new therapist, get tested, get results, get better? That's just bizarre. And that's why I'm worried. What do I do if I get ill now? I'm just trying to stop my hopes from getting too high.

Had a quick chat with my nutritionist today, and have booked an appointment in a couple of weeks to go through the results of the food intolerance test and the CDSA test (the CDSA results haven't come in yet).

The nutritionist (whose name is Michael Franklin by the way) said that he had only ever seen four or five results on the food test that had come in higher than my 99 for cow's milk, so that's pretty encouraging - obviously not in the sense that my body hates milk, but in the sense that the higher the score the greater the chance is that I will see some improvement with a new diet.

I've been dairy-free now since Monday lunchtime, and I've been feeling pretty good, no symptoms to speak of. It's still far too early to make any conclusions though. If I have two weeks without pain then that might be progress; if I have two months without pain then we're definitely onto something.

I've got the results back for the ELISA food intolerance blood test - these guys work fast!

The results they send you basically split foods into one of three categories, colour-coded red, amber or green to show which foods you should avoid (red), which are borderline (amber), and which can be eaten freely (green). They also tell you, for the 'avoid' foods only, exactly what level of antibodies were found, with the higher the number the more significant the reaction.

My 'avoid' foods are: soya bean (15), rye (18), barley (14), wheat (14), rice (13), cow's milk (99), egg white (35), goat's milk (29), egg yolk (13), cola nut (65), pear (18) and brazil nut (13). I also have borderline results for corn, peppercorn, coffee, grapefruit, almonds and cashew nuts.

So, what does this mean? Well, obviously the first thing it means is that I should stop drinking cow's milk right this second - I got a '99' for cow's milk, far higher than every other result, so that one may well be causing a problem. This means giving up cheese, yoghurt etc but it's not the end of the world.

The second thing is that although these results are useful on their own I'm glad I'm doing these tests with the help of a nutritionist - what on earth is a cola nut when it's at home? And do I avoid all the borderline foods as well or can I eat these occasionally?

Anyway, although the milk thing is gonna be a pain, I'm quite happy with these results. I was a little worried that they wouldn't come up with something that made sense - that they might just say that I was most sensitive to foods which I eat everyday, and less sensitive to foods that I eat less often, which would seem to negate the usefulness of the test. That's not the case though - I eat bananas and oranges every day but there's no reaction at all to them.

The other thing I was worried about was that the test might come up with something completely obscure like 'avocados' which I never eat anyway, and it hasn't done that either. So, just on the basis of a 'logic' analysis, there's no reason why these results can't be perfectly accurate.

(PS: If anyone's wondering why I came up reactive to wheat and gluten-stuff when I've been on a gluten-free diet for years, I did eat a couple of sandwiches a few weeks before I took the test, just to see what would happen...and if those two sandwiches were enough to show up then I imagine I should probably stick to the gluten-free thing...)

I've added quite a special page to my main IBS Tales site today - a page about the age-old "It's all in your head" remark.

I still receive far too many emails from IBS sufferers who say that their friends and family blame their IBS on their emotional state or their lack of mental control, or whatever other ridiculous reason they have for saying something as offensive and hurtful as "It's all in your head".

So I wanted to produce a page to help sufferers fight back against this appalling phrase. What I've done is collect quotes from the most respected IBS and digestive-related medical institutions in the world, each one stating categorically that IBS is not a psychological or psychiatric disorder.

If your loved one insists on saying that your IBS is in your mind, then they basically have to challenge the expertise of hundreds of top gastroenterologists. Are they really that brave?

OK, I've now sent off the second (and last) test, which was the food intolerance ELISA test. This was certainly not as gross as the CDSA test but was more painful - you get a little 'lancet' which you have to use to puncture the tip of your finger, and then you squeeze the wound to allow drops of blood to run into a little vial.

Actually, it really wasn't that bad, and although I did have some trouble at first getting the blood to run into the bottom of the vial rather than just stick to the edges, I got there eventually. I also had to prick my finger about four or five times to stop the blood from drying up, but it wasn't as gruesome as it probably sounds.

The little lancet is very good and only makes a tiny puncture wound, so there was no need for plasters or anything afterwards, and you get an antiseptic wipe to clean up with once you're done.

So - the hard part's completely over now. I should get the ELISA results in about 10 days, and the CDSA results in around three weeks. I'll be sure to let you know how I get on.

If anyone's interested in taking their own CDSA or ELISA test (and who wouldn't be after my lovely descriptions) then just do a Google search for "CDSA" and "Great Smokies" (the most popular lab for the stool tests), and "Cambridge Nutritional Science" or "York Tests" for the ELISA test.

(Don't read this if you're eating. I mean it - you have been warned.)

OK, today I finished taking the comprehensive digestive stool analysis (CDSA) test, which checks for little bugs and beasties like unfriendly bacteria and parasites. And it was pretty unpleasant.

Basically, you get a home test kit, and then you have to collect 'samples' over three consecutive days. This involves pooping into a small cardboard tray, and then using a little spoon to collect samples of the poop. You place the samples in a small plastic tube which contains some preservative liquid, and you stir the mixture with the spoon. Then you shake the mixture to make sure it has dissolved (I did warn you about the eating thing. Did you think I was kidding? Oh no).

You then write your name on the tubes, put them in plastic bags and send them off in a jiffy envelope to the lab.

As I say it was rather gross, but at least it's done now and I can wait for the good bit - getting the results. And I also know that if I am ever in a situation where my life depends on my ability to poop into a small cardboard tray, I shall be sorted.