Fructan, not gluten, induces symptoms in patients with gluten sensitivity

Re:Fructan, not gluten, induces symptoms in patients with gl... by Lazare on Wednesday November 15, 2017 @03:59AM (#15702428)

My significant other is in a similar situation. A reasonable amount of wheat-based baked goods (a burger bun, a slice of bread, a slice of pizza) will almost invariably set her off (causing both skin and intestinal distress). And if it sets her off once, it'll always set her off. Small amounts of seemingly similar wheat-containing foods (eg, a bite of someone else's sandwich) will generally not. Non-gluten containing foods seem to be fine...but even when she's great about avoiding gluten, she'll have occasional outbreaks, strongly suggesting it's not (just? only?) gluten.

Her doctor has labelled it as gluten sensitivity, but we're well aware that it's not really clear she has any such thing, or if such as thing even exists. The FODMAP/fructan stuff sounds promising, but one common source of FODMAPs is garlic, and she adores garlic and eats it with everything in vast amounts which 1) strongly suggests that at least some FODMAPs are fine for her and 2) makes her extremely reluctant to try a FODMAP free diet.

The whole this is baffling. She clearly doesn't have coeliac disease, small amounts of gluten are (normally) fine, large amounts of things containing gluten are not fine, very similar things without gluten are fine, but something other than gluten that is consumed even when gluten is being avoided is not fine, at least some high-fructan/FODMAP foods are fine...I feel like I'm missing a piece of the puzzle. My current pet theory is that it's a reaction to at least two different substances, but what?

For now she just avoids gluten and (mostly) avoids outbreaks. It's confusing but it's an easy coping strategy.

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by mirko22 on Wednesday November 15, 2017 @04:45AM (#15702635)

I have similar problems, but when i make my own bread it does not happen... I think it has to do more with additives and other stuff they put in wheat-based baked goods these days that actually trigger reactions.

Bread used to go dry after a day, now it lasts for a week... That is not normal.

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by novaRom on Wednesday November 15, 2017 @10:03AM (#15704218)

Here in Germany I know nobody who has this gluten sensitivity, but I meet more people abroad with this issue, esp. many digestive problems seems to appear in US - so maybe something is different during food processing? Do you have this problem if you eat say pasta imported directly from Italy?

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by evglabs on Wednesday November 15, 2017 @08:34PM (#15709642)

I'm in the US and have experienced gluten problems.

It's nowhere near as bad as it was, I can eat wheat with no problem, but can't eat a lot for a long time.

But, imported Italian pasta doesn't give me a problem.

I've noticed even now with US wheat I can get constipated, but not with the Italian pasta.

I've heard so many things, like US wheat has 4x the gluten, or is sprayed with RoundUp after harvesting to dry it out, so who knows, but there does seem to be something different.

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by WillReplyfFood on Wednesday November 15, 2017 @11:50AM (#15705175)

There is aspirin and alot of other additional stuff in flour. If you grind your own wheat - you miss out on all those. But you gain great taste- most flour does not contain the oil-containing seed part of the wheat, as this tends to go rank very fast in storage.

Ascorbinsäure (E 300) Natrium-L-Ascorbat (E 301) Calcium-L-Ascorbat (E 302) Lecithin (E 322) Guarkernmehl (E 412) Mono- und Diglyceride von Speisefettsäuren (E 471) Milchsäureester von Mono- und Diglyceriden von Speisefettsäuren (E 472 b) Wein- und Essigsäureester von Mono- und Diglyceriden von Speisefettsäuren (E 472 f) Saccharoseester von Speisefettsäuren (E 473) Zuckerglyceride (E 474) Polyglycerinester von Speisefettsäuren (E 475) Natriumstearoyl-2-lactylat (E 481) Calciumstearoyl-2-lactylat (E 482) L-Cystein (E 920)

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by mirimir on Wednesday November 15, 2017 @04:42AM (#15702617)

Yes, same for me. I know which commercial wheat products I can eat, and which I can't. There's no obvious correlation. Stuff that's labeled "gluten-free" is generally OK. But some whole-wheat stuff that's clearly not gluten-free is also OK.

So basically, I eat what I know is safe for me. If there's something that appeals a lot, I may test a little.

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by InternetOfStuff on Wednesday November 15, 2017 @05:34AM (#15702799)

Just to maybe give you some additional orientation: my sister has "proper" coeliac's.

It took years for it to be diagnosed, partly because doctors weren't considering for a while, but also because it can be elusive -- might it be possible that any tests doctors made on your SO were false negatives? It's not uncommon unfortunately.

Also, a surprising number of things contain gluten unexpectedly. Some toothpastes for instance. Vinegars. Lemonades. So perhaps your SO's paradoxical outbreaks are compound effects of "hidden" gluten she has consumed over the day.

There are also coeliac's sufferers who have a tolerance to low amounts of gluten in that they don't feel distress. They are threatened by the same health risks as those who feel pain though (such as increased cancer risk).

Again, not armchair-doctoring here, I just want you to have extra information which might help you both understand this better.

[ Parent | on HN ]

Re:Fructan, not gluten, induces symptoms in patients with gl... by phaedrus on Thursday November 16, 2017 @10:26AM (#15713350)

I've been living with the exact same situation. I've started avoiding all FODMAPs (including garlic) and it seems to have helped. But, it's very hard to do since so many processed foods and restaurant meals can seem OK but turn out to have included an ingredient on the "avoid" list. And if ingredients say "2% or less of ...", I'm neither sure how much the package contains in absolute % nor relative effects.

So when I do have an outbreak despite trying to be careful, I am never sure whether it invalidates my hypothesis about the cause or indicates I just wasn't careful enough.

[ Parent | on HN ]