Going gluten free

I've been suffering from some undiagnosed illness (written off as 'IBS' 10+ doctors who have never ordered a colonoscopy) for over 10 years now. At the beginning when I was in my late teens, I used to get terrible cramps after eating meals and really bad trapped wind which was very painful. As I got older, the pain improved, but I still suffer from quite bad bloating (have been asked when I was due more than once) and the worst symptom is constant loose, yellow stools. I'd go to the toilet 4+ times on a bad day and could be sitting there for ages, as it always feels like my bowels haven't emptied properly. I have bad irritation in that area and haemorrhoids, from having to wipe dozens of times.

I've been blood tested for all the obvious illnesses (Coeliac etc) and they've all come back negative. I've been told it's unlikely to be a wheat allergy if I'm not Coeliac and pretty much told to get on with it. TBH, I've been suffering from this for so long, it's just part of my life now. Last night though, my partner saw me emerging from the loo for the 4th time that evening and said we need to do something about it.

I'm considering going off wheat just to see if it makes a difference. The question is, how long should I give it? 2 weeks? A month? I was also wondering if anyone could recommend a website or blog with more info about going gluten free - lists of foods I can/can't eat and recipe ideas, stuff like that. It's going to be really tough, especially given that I have to teach long hours without breaks, so snacking isn't possible and that food here in Spain is so dependent on bread, but I really want to try it. Anything for the chance of maybe getting better.

0lddog

Have you come across "The Specific Carbohydrate diet" ? ( if not, lots will come up with a Google )

Related to this is a short book "Breaking The Vicious Cycle"

( http://www.amazon.co.uk/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?ie=UTF8&qid=1350824030&sr=8-1 )

For some local input have you browsed around Coeliac.ie ?

http://coeliac.ie/webboards/index.php?sid=61e1d0c3d4c8b5c4ff2abc577b36eed8

Pet

Hi Winter Unsightly Quicksand,

Like you, I suffered from GI problems for about 2 years, and got nowhere with my GP, it was affecting my mood, energy levels and concentration. After a lot of back-and-forth, I eventually got admitted to hospital and ended up with a diagnosis of Crohn's, but in the meantime, months/years of trial and error with various diets did help a lot.

Here are some really quick practical tips for you to try (all are based on hard science, yet none are "medical" as such - simple dietary changes, mostly).

1)Do try giving up the wheat. You'll need to stop it for at least 2 months to see any difference - but more than likely you will. That made the single biggest difference for me (and like you, I didn't show any positive results on any of the coeliac tests). There are other irritants in wheat despite gluten (soluble and insoluble fibre, and also exorphins, for example) which can mess up your GI tract bigtime.

2)Eat some coconut oil with every meal (a tablespoon or so should do it) - it acts like an antibacterial agent and keeps your upper intestine free of the bacteria that cause bloating and diarrhea. This should work immediately, but will only dent your symptoms - ie, it's a patch, rather than a solution.

3)Try a Paleo-style, low-carb diet, and maybe try the SCD (as mentioned above) - it's a bit scary and intimidating to start with, so before you start with the whole intro diet, just pay attention to the tips about FOS, inulin and other soluble fibres (FODMAPs, basically). For me, things like beans, leeks, and large amounts of onions are a killer - but it's different for everyone.

4)Consider getting a stool test done with Metametrix - http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects - it can see if you've got an overgrowth of bad bacteria/protozoal infection, and bring the results back to an open-minded GP who may be able to work with you.

I also really like both Chris Kresser's and Mark Sisson's websites - both are full of information, especially when it comes to GI problems, and it's all based on scientific evidence.

kangaroo

There are some studies that can be quoted if people are dismissive of the idea of non-Coeliac gluten sensitivity e.g.

Gluten Causes Gastrointestinal Symptoms in Subjects Without Celiac Disease:
A Double-Blind Randomized Placebo-Controlled Trial.

Am J Gastroenterol. 2011 Jan 11. [Epub ahead of print]

Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD,
Shepherd SJ, Muir JG, Gibson PR.

Monash University Department of Medicine and Gastroenterology, Box Hill
Hospital, Box Hill, Victoria, Australia.

Abstract

OBJECTIVES: Despite increased prescription of a gluten-free diet for
gastrointestinal symptoms in individuals who do not have celiac disease,
there is minimal evidence that suggests that gluten is a trigger. The aims
of this study were to determine whether gluten ingestion can induce symptoms
in non-celiac individuals and to examine the mechanism.

METHODS: A double-blind, randomized, placebo-controlled rechallenge trial
was undertaken in patients with irritable bowel syndrome in whom celiac
disease was excluded and who were symptomatically controlled on a
gluten-free diet. Participants received either gluten or placebo in the form
of two bread slices plus one muffin per day with a gluten-free diet for up
to 6 weeks. Symptoms were evaluated using a visual analog scale and markers
of intestinal inflammation, injury, and immune activation were monitored.

RESULTS: A total of 34 patients (aged 29-59 years, 4 men) completed the
study as per protocol. Overall, 56% had human leukocyte antigen (HLA)-DQ2
and/or HLA-DQ8. Adherence to diet and supplements was very high. Of 19
patients (68%) in the gluten group, 13 reported that symptoms were not
adequately controlled compared with 6 of 15 (40%) on placebo (P=0.0001;
generalized estimating equation). On a visual analog scale, patients were
significantly worse with gluten within 1 week for overall symptoms
(P=0.047), pain (P=0.016), bloating (P=0.031), satisfaction with stool
consistency (P=0.024), and tiredness (P=0.001). Anti-gliadin antibodies were
not induced. There were no significant changes in fecal lactoferrin, levels
of celiac antibodies, highly sensitive C-reactive protein, or intestinal
permeability. There were no differences in any end point in individuals with
or without DQ2/DQ8.

CONCLUSIONS: "Non-celiac gluten intolerance" may exist, but no clues to the
mechanism were elucidated.

Am J Gastroenterol advance online publication, 11 January 2011;
doi:10.1038/ajg.2010.487.

I got a diagnosis of IBS before getting a diagnosis of M.E. Since following advice for M.E. e.g. pacing, it has helped my IBS-type symptoms. Also, I take a low dose tricyclic antidepressant for sleep and pain problems associated with M.E., and it has helped with IBS-type symptoms.

yoda2001

Here is the Coeliac Assoc of Ireland website www.coeliac.ie - Perhaps someone there would be able to advise you on going gluten free in Spain. I have a child who is on a gluten-free diet, if you have any questions.

Thanks for the advice. It's crazy how many foods contain gluten - I was having a look in the press and it's in EVERYTHING. Soy sauce, stock, everything.

kangaroo, how did you end up getting your diagnosis of ME (if you don't mind me asking?)

yellowlabrador

had a great improvement coming off gluten 18 months ago. It improved my joints as it reduced inflamation, I also have had blood in my urine for the past 20 years and an irritable bladder, that's completely cured. I had bloating and like you trouble going to the toilet. There was improvement within a week. I get really sick if I have the slightest bit of gluten. I'm also sensitive to wheat and I know within hours if I've eaten anything wrong. Don't trust any food packet. If it doesn't say, glutenfree then take it it isn't.
It's been a long slog with plenty of misses, but if I stick to a paleo diet, lot's of fruit veg meat and fish and I still use dairy , I'm cured.

kangaroo

Winter Unsightly Quicksand wrote: »

kangaroo, how did you end up getting your diagnosis of ME (if you don't mind me asking?)

I didn't get diagnosed till I was quite ill.

I was on my feet for a number of years and did come across at least a couple of descriptions - however they didn't resonate with me, I was fairly functional and didn't have some of the symptoms they mentioned.

However, I eventually got worse, remembered reading the articles, and looked up some info in a library (this was in pre-internet days) and it seemed to fit what I had very well (which was good news in one way, but not so good in another). If I remember correctly at that stage my GP then thought I might be too ill to have M.E. (it turned out that she earlier had thought I wasn't ill enough to consider the diagnosis!). She suggested I attend Dr. Austin Darragh who was then in the Blackrock clinic. I found him very good - he took a full medical history, did a physical, looked at some results I had had, etc - appointment was something like 75-90 minutes, nothing like anything I got before. He ordered some more tests but gave me a provisional diagnosis at that stage, presuming nothing showed up in extra tests. He confirmed diagnosis in a later appointment (and put it in writing on various forms). He is no longer in the Blackrock clinic but still sees patients privately from his home.

Unfortunately a lot of doctors aren't really on the look out for it. I've heard from others that some doctors say things like you have the symptoms but I don't believe in it. It's well recognised from research studies that irritable bowel syndrome and fibromyalgia or chronic fatigue syndrome (/ME) often go together, but I'm not sure how many Irish gastroenterologists look out for it. Other symptoms also cluster with IBS, FMS, ME/CFS e.g. irritable bladder, vulvodynia, etc. Of course, IBS is much more common than FMS or ME/CFS so there are plenty of people with IBS who have neither of them.

ETA: If you are interested in doctors who might diagnose ME in Spain, patient organisations there would hopefully be able to give some names (or point you in the direction of people who could give names). I think it's a pretty common problem around the world (that a lot of doctors are not on the look out for it).

kangaroo

kangaroo wrote: »

I didn't get diagnosed till I was quite ill.

I was on my feet for a number of years and did come across at least a couple of descriptions - however they didn't resonate with me, I was fairly functional and didn't have some of the symptoms they mentioned.

How ill did you get, if you don't mind me asking? What symptoms did you have?

However, I eventually got worse, remembered reading the articles, and looked up some info in a library (this was in pre-internet days) and it seemed to fit what I had very well (which was good news in one way, but not so good in another). If I remember correctly at that stage my GP then thought I might be too ill to have M.E. (it turned out that she earlier had thought I wasn't ill enough to consider the diagnosis!). She suggested I attend Dr. Austin Darragh who was then in the Blackrock clinic. I found him very good - he took a full medical history, did a physical, looked at some results I had had, etc - appointment was something like 75-90 minutes, nothing like anything I got before. He ordered some more tests but gave me a provisional diagnosis at that stage, presuming nothing showed up in extra tests. He confirmed diagnosis in a later appointment (and put it in writing on various forms). He is no longer in the Blackrock clinic but still sees patients privately from his home.

Unfortunately a lot of doctors aren't really on the look out for it. I've heard from others that some doctors say things like you have the symptoms but I don't believe in it. It's well recognised from research studies that irritable bowel syndrome and fibromyalgia or chronic fatigue syndrome (/ME) often go together, but I'm not sure how many Irish gastroenterologists look out for it. Other symptoms also cluster with IBS, FMS, ME/CFS e.g. irritable bladder, vulvodynia, etc. Of course, IBS is much more common than FMS or ME/CFS so there are plenty of people with IBS who have neither of them.

ETA: If you are interested in doctors who might diagnose ME in Spain, patient organisations there would hopefully be able to give some names (or point you in the direction of people who could give names). I think it's a pretty common problem around the world (that a lot of doctors are not on the look out for it).

Interesting. I'll look into it.

kangaroo

Winter Unsightly Quicksand wrote: »

How ill did you get, if you don't mind me asking? What symptoms did you have?

Just to say I'm not ignoring this, but it's a long list so won't be doing it today.

Squeaky the Squirrel

lidl are doing a gluten free thing for the week, don't know if prices are good or that as I don't buy the stuff but may be worth a look for some on here.