Gluten Intolerance: There seems to be a lot of... - IBS Network

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Gluten Intolerance

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There seems to be a lot of confusion on this site regarding gluten intolerance. If you've been tested for this and your results have come back clear, then you do not have a sensitivity to gluten. If, however, you know for certain that wheat, barley and rye give you problems, your issue is with the fructans contained in those cereals not the gluten. As anybody doing the low FODMAP diet will know, fructans are not 'safe' food.

The following is a quote from Patsy Catsos's website ibsfree.net which she also reiterates in her book 'IBS - Free At Last':

'It is important to note that even though wheat happens to be the primary source of fructans in our diets, intolerance of this kind has nothing to do with the wheat protein, gluten, which those with celiac disease must avoid.'

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24 Replies
Ibsr profile image
Ibsr

Good point Roz. I would add that when eating out starting with the gluten free menu is useful for fodmappers as this cuts out fructans and saves you having to explain that you are avoiding fructans and not gluten to the restaurant. ( I guess this is why there is confusion).

in reply to Ibsr

Yes, I agree. However, the biggest problem occurs when people mistakenly think they're gluten-intolerant and gleefully buy gluten-free processed foods from the supermarket and then don't understand why they still get problems. Gluten-free breads for example frequently contain apple juice concentrate (only the gods know why) and also various gums to make the mix stick together - all pretty bad for anybody with IBS. The manufacturers make no effort to emphasise that these products are essentially designed for people with coeliac disease not IBS.

Ibsr profile image
Ibsr

Oh yes another very valid point. I have found I can't tolerate ANY sugar so those gluten free sugar loaded things are out for me too.

jimb0123 profile image
jimb0123

Hi Roz

Not so sure about this one, probably both contributors but plenty more research required (yes totally agree that the Fructan link isn't as well known in the public domain as gluten!)

A recent review of in the BMJ (BMJ 2012;345:e5836 doi: 10.1136/bmj.e5836 (Published 4 September 2012)) quoted the following research:

"Evidence from a double blind, placebo controlled trial

also suggests that a gluten free diet may benefit people with

IBS who test negative for coeliac disease, with poorer control

of symptoms among those randomised to gluten."

The reference given was Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, et al. Gluten

causes gastrointestinal symptoms in subjects without celiac disease: a double-blind

randomized placebo-controlled trial. Am J Gastroenterol 2011;106:508-14.

11 Johannesson E, Simren M, Strid H, Bajor A, Sadik R. Physical activity improves

Thanks,

Jim

in reply to jimb0123

Hi Jim,

A close friend of mine, a professor of microbiology, is currently engaged in independent research concerning food intolerances and IBS. Although his work still has a long way to go, he currently stands by the theory that fructans rather than gluten are the culprits in wheat, barley and rye which cause intestinal problems in those of us who do not have coeliac disease.

From a ground-level point of view, it seems to me that if someone has issues with cereals, and is also intolerant of other foods containing fructans, e.g. the onion family, then his/her problem is with fructans not gluten.

My concern (and that of my microbiology prof) is that the media ram gluten intolerance down our throats on such a regular basis that IBS-ers, with wheat et al problems, automatically assume that it's the culprit. They then start eating gluten-free and, although this makes them feel somewhat better, they still have gut problems because they don't realise that fructans is the enemy and is to be found in many other foods as you know.

The thing I find most irritating is this catch-all, get-out term of IBS. Another friend of mine, misdiagnosed with it 2 years ago, was eventually discovered to have a gynaecology problem and, after minor surgery, found that her 'IBS' was cured...

I think the NHS would save itself a vast amount of money if it invested in major, government-funded research to find the causes of IBS rather than spending it on prescriptions for various pills etc.

Roz

AfricanSheila profile image
AfricanSheila

So what breads etc can you eat if it is fructans not gluten?

in reply to AfricanSheila

Fortunately, I've been able to re-introduce small, infrequent amounts of high FODMAP foods recently and can eat a couple of thin slices of wheat or rye bread about twice a week with no ill-effects. Up until then, I ate only tortillas made with maize flour - no other breads at all.

AfricanSheila profile image
AfricanSheila in reply to

Thank you so much - I look forward to seeing a FODMAP dietician soon!

PatV profile image
PatV

Thanks for clearing that up! Really B)

PatV profile image
PatV in reply to PatV

B)= smily face with glasses :D

Yes, how right you are Kerry about faux products. I think one of the biggest cons must be lacto-free hard cheese!

welshchoc profile image
welshchoc

Hi I am curious about the lactofree cheese Is that misleading?

in reply to welshchoc

It sure is! So-called lactose-free hard cheese is a completely unneccessary product.

The lactose in milk is all contained in the whey. This is separated out and completely drained off during the making of almost all hard, and many soft, cheeses. You can check the amount of lactose in cheese by reading the sugar content on the ingredients list. Most manufacturers list a trace or minute percentage amount just so as they're covered. One of the most popular cheeses to avoid at all costs is ricotta as this made purely from the drained-off whey of other cheeses.

welshchoc profile image
welshchoc in reply to

Thanks for explaining this :-) It just goes to show how misleading some products are. Handy to know about ricotta cheese I shall be avoiding it lol

poing profile image
poing

I don't think I agree with the original poster.

The world is more complicated than just food allergies and coeliac disease... there are intolerances too, which I believe are a delayed immune reaction to food proteins, rather than the instant reaction that is found in a "genuine" food allergy.

There are skin prick tests for allergies, and antibody tests/biopsy for coeliac disease, but there aren't any laboratory tests for food intolerances. That doesn't make them any less real.

I consider myself to be non-coeliac gluten sensitive. I am negative in the tests for coeliac disease, but have a bad reaction to eating any product with gluten. I get bloated and constipated and also now get tongue sores. I've done an elimination and challenge several times in the last couple of years, so I'm absolutely sure about this.

I can eat onions pretty much every day, so I doubt that I'm having any major problems with fructans.

in reply to poing

I don't think that anyone on this forum is in any doubt that food intolerances are a major cause of IBS, indeed, discussion of these makes up the best part of countless posts whereas allergies are hardly ever mentioned - if at all.

poing profile image
poing in reply to

I was mainly responding to your comment "if you have been tested for this [gluten intolerance] and your tests come back clear..." There is no accepted laboratory test for gluten intolerance, which makes that comment hard to understand.

There are all kinds of intolerances, they can be caused by enzyme deficiencies (e.g. lactose intolerance), dysbiosis (bad gut bugs that feed off the particular food) or an immune reaction causing localised inflammation in the gut (that's what I believe that I have based on the presence of anti-gliadin antibodies). There are probably other ways the digestive system can go wrong as well... most of those don't get tested for, especially the ones the medical profession hasn't been able to identify yet - they know a lot less than they'd like us to think they do!

So I think it's a little premature to say, if the tests are clear, "it must be fructans".

in reply to poing

My interaction with countless other IBS-ers who, like me, have successfully tried eliminating fructans (plus all other FODMAPs) from their diet, still lead me to believe that my statement is correct.

poing profile image
poing in reply to

If you think that for a person with IBS, it's more likely that the fructans and not the gluten that is the problem, then I'd go along with your experience is telling you - no arguments from me on that one.

Sorry, it probably feels like I am splitting hairs here... maybe only a minority of folk with IBS have a problem with gluten, but I'm pretty sure that some will, whatever the tests do or don't say, since the NHS doesn't have ANY testing for gluten intolerance. The only way is through elimination and challenge.

Unlike problems with FODMAPs, I think that problems with gluten don't just go away over time (so you can't reintroduce it later), so it's quite important not to jump to conclusions.

Anyway, I hope you understand where I'm coming from.

Ladycx profile image
Ladycx

Er I had a gluten intolerance test at The Royal Free Hospial last year

poing profile image
poing in reply to Ladycx

What did that involve? I'm curious.

Ladycx profile image
Ladycx

I had a series of blood tests. Then a series of scans over two weeks in which I had to eat various things and then they watched how they got digested. The final scan showed up abnormal amounts of gas Which was measured 24 hours after eating bread products.

Ladycx profile image
Ladycx

However, although most people who are gluten intolerant ate also yeast intolerant and therefor gluten free bread is not the answer.

Although new to IBS, I find it strange that the advice across a lot of support sites for various health problems, always has an advocate for removing certain foods from a diet in the hope of a cure. I have tried a vegetarian well balanced diet, felt well, lost a few pounds as was very active too, tried vitamins again felt well but didnt cure anything. It is possible some people feel better with or without certain foods or taking vitamins , but I think genuine food intolerance is rare and at the risk of annoying someone think it is more likely that there is an imbalance within the stomach or elsewhere. Today on a facebook site for people with Fibromyalgia, I have seen a post from a man arguing you can heal yourself, that you dont need meds as they are poisons. Perhaps he means chemicals. But really what is food but a chemical chain. Sometimes if my stomach is really not so good I have found a day or two of eating very little but plain food and a lot of water has helped. Dont claim to be an expert but this is my opinion and what does worry me is that usually it costs you to be advised on such matters.

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