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.

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.

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?

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.

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)

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.

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.

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.

Wheat contains FODMAPs. I can't remember what kind exactly, but they're there. So it's actually kind of hard to eat gluten without FODMAPs, unless it's seitan or something. Hence the abstract of the article states:

"Foods with gluten often contain fructans, a type of fermentable oligo-, di-, monosaccharides and polyols"

https://www.verywell.com/wheat-and-the-low-fodmap-diet-19447...

My pet theory is that people are sensitive to the glyphosate sprayed on most wheat, not the actual gluten.

People spray glyphosate on wheat?

Glyphosate is typically used in conjunction with "Roundup Ready" crops, or before/during planting in "no-till" crops. While Monsanto developed a Roundup Ready line of wheat, it never actually made it to market, AFAIK, so why would you be spraying glyphosate on wheat?

(Serious question; while I have some background in agriculture, I'm not familiar with all of even the common practices.)

ETA: Reading the Snopes link, looks like it's mainly practiced in North Dakota, which explains why I've never heard of it.

It's not practiced in ND out anywhere else. The export market won't accept it and it's not deliverable against spring wheat futures so it's not marketable and never has been.

It makes the wheat ready for harvest all at the same time.

Glyphosate is banned from organic wheat farming and organic wheat flour is cheaply and widely available for experimenting. "Bobs Red Mill" and numerous other brands, etc.

Glyphosate is popular when growing non-wheat non-organic produce; if a glyphosate allergy existed, it would likely not appear like a gluten allergy because most products that once contacted it are not gluten-containing.

You can buy glyphosate products at home depot for experimentation.

It would appear to be a cheap and simple hypothesis to test.

> Glyphosate is popular when growing non-wheat non-organic produce

I only know of glyphosate resistant soy which ends up in cow food. You usually don’t spray glyphosate on stuff you want to eat because it kills it, which only in the case of wheat is what you want.

Actually, farmers desiccate wheat before harvest because dying plants yield more seed. Glyphosate is among various pesticides used for desiccation.

Just want to chime in for other confused people (I grew up on a Midwestern farm and had never heard of the practice of desiccating wheat, so I've been reading a lot about it on the internet today) -- this appears to be a northern latitude practice - every reference I can find to it is from Canada, the UK and North Dakota, so I'm guessing this has to do with growing wheat in a shorter growing season.

So it's not nearly a universal practice, but on the other hand, North Dakota does account for 20% of the US wheat production. (And on the gripping hand, I don't know what wheat distribution in the US looks like; will ND wheat tend to be consumed in a particular region, or will secondary distribution through eg packaged foods tend to distribute it nation-wide?)

I'll see your pet theory and raise you mine: most people are sensitive to the additives added to fortified wheat sold in the States, especially Vitamin B[0] and Iron[1].

[0]: https://freetheanimal.com/2016/05/enrichment-promotes-everyt...

[1]: https://freetheanimal.com/2015/06/enrichment-theory-everythi...

also related https://cdn-images-1.medium.com/max/1600/0*pBs90R1LfdGOfpTS....

This makes even more sense.

I was constantly trying to figure out why people with gluten sensitivities don't have reactions in most European countries. The enrichment theory seems pretty persuasive.

But then why only gluten/wheat products, and not other crops treated with glyphosate?

The EU limit for the residual amount of glyphosate allowed in wheat is higher than many other crops, so maybe that's why. But barley and soya beans, for example, are even higher.

A piece of evidence to add to the puzzle: new study just came out in JAMA looking at urine levels of glyphosate in older adults in California. It's increased a lot over the last few decades. Humans are definitely getting a lot of it. https://media.jamanetwork.com/news-item/study-finds-increase...

The EU have acceptable "Maximum Residue Levels" of Glyphosate in foods: http://ec.europa.eu/food/plant/pesticides/eu-pesticides-data...

In wheat it is 10 mg/kg. (Page 5 from the above link).

This UK report: https://www.gov.uk/government/uploads/system/uploads/attachm...

found pesiticide residues in 90 of 96 cereal crop samples tested. However, it concluded that "None of the residues detected by the laboratory would be expected to have an effect on health."

A BBC TV programme covered this issue in 2014: http://www.countryfile.com/news/pesticides-found-over-60-uks...

>nobody is spraying wheat right before harvest

Glyphosate is sometimes used as a desiccant to alter the timing of wheat harvests, ensure even ripening, and to make harvesting easier. While it's not a widespread practice, it does happen in the US.

> Glyphosate doesn't last long enough to persist in plants and nobody is spraying wheat right before harvest.

Citation needed!

Snopes says that the underlying practice is real despite a lack of evidence that the glyphosate causes the ailments: https://www.snopes.com/food/tainted/roundupwheat.asp

This paper attempts to draw some kind of causual biochemical link between glyphosate and celiac through metabolic processes: https://www.ncbi.nlm.nih.gov/pubmed/24678255

Actually, it's a relatively popular harvesting practice for non-organic crops -- kill them all at the same time so they're all ready to harvest. Differs by region, but afaik in the US foods labelled as organic can't be harvested in this way.

The typical Glyphosate mix includes many other chemicals that do persist.

I'm also pretty convinced that "gluten sensitivity" generally has little to do with gluten. I react to many wheat products (including certified organic ones) with gastrointestinal upset, acne, etc. But I can eat some regularly, with no problems. It's clearly not crackers vs bread. But what?

So maybe fructan. I wonder what affects fructan levels in wheat products.

Why should organic products not contain gluten?

I'm not arguing that they don't. But one hopes that they don't contain, for example, glyphosate.

I wish people stop with this glyphosate in food. The traces we cand find aare in small quantities and even if you eat the same quantity of lead, you should still be fine.

The issue with glyphosate is the volatility, the fact that it stay in the ground, it can be absorbed through the skin (hence bad for farmers and people living near farms) but at least in europe, the quantities you can ingest are too small to endanger you. The fact that the main arguments of anti-glyphosate is this flawed argument, lobbies can easely convince the legislators that this argument have non-scientific ground (obviously) and should be ignored.

See Oct JAMA article; while food may contain only trace amounts we're ingesting and excreting more than ever.

Sorry. It was a bad example of pesticides. I used it because it's been discussed.

The human brain has immense ability to correlate things, justifiably or no. Ultimately anecdotes like yours are frustrating because so many possible things could be happening but people treat your hypothesis seriously anyway.

Well it's fair to do so. Correlation is not causation, but that's a starting point at least. And to find an answer, you need to start somewhere.