I'm pretty convinced by the literature that gluten sensitivity isn't really a "thing" outside of celiac disease, but even with me, I have problems with painful acne breakouts when I eat gluten, that don't happen when I don't have gluten. And from doing some googling and informal surveying of friends, it seems I'm far from alone on that.
Now is that because of gluten itself? Who knows. Maybe it has to do with how wheat is processed these days, or something else. It's really frustrating that something so basic and common doesn't seem to have any scientific answers, though.
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.
Bread used to go dry after a day, now it lasts for a week... That is not normal.
So basically, I eat what I know is safe for me. If there's something that appeals a lot, I may test a little.
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.
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.
"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...
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.
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.
[0]: https://freetheanimal.com/2016/05/enrichment-promotes-everyt...
[1]: https://freetheanimal.com/2015/06/enrichment-theory-everythi...
So maybe fructan. I wonder what affects fructan levels in wheat products.
I would not be surprised if the way we're processing / spraying our wheat here is giving some folks problems.
In Switzerland some bakers have started to go back to the old methods because of this.
Edit:
[1] http://www.motherjones.com/environment/2015/02/bread-gluten-...
Also I think the FODMAP people are on to something important.
Sadly... my inability to refind this article makes me suspect that, though I may be unsurprised by this idea, I have no evidence for it. So, if anyone can help refute the idea, that would be great! :)
I found “Oral allergy syndrome” http://acaai.org/allergies/types/food-allergies/types-food-a...
Edit: Just read the other reply. I'm definitely allergic to birch and grass pollen and I've always had hay fever. That solves that mystery.
I saw 3 different digestive specialists (I believe all gastrointestinologists, it's been a few years). Their approaches did nothing. Then I searched for digestive disease research centers, went to one, and was "cured" after two visits. The doctor said that my situation is becoming more prevalant, and that the issue is typically one or more of the following: A hostile bacteria in the digestive tract, overgrowth of one or more bacteria in the digestive tract, or a parasite.
A round of the following two drugs fixed me within a few days: Alinia and Neomycin. I was drinking beer and eating noodles again without any problems.
Now I have to take an antibiotic that targets the digestive tract every 1 - 1.5 years as symptoms return. This indicates that my problem is bacterial rather than parasitic, although the exact cause of my problem hasn't been identified.
An interesting side note: I traveled to Japan while affected by gluten (but before corn became problematic), and I ate in restaurants the whole trip with only one problem. I am certain that I was consuming small amounts of gluten with each meal. I learned that Japan and other countries have rejected US wheat shipments over certian GMOs, but I couldn't reliably explain why I was largely unaffected in Japan.
[1] http://dujs.dartmouth.edu/2008/04/a-bacterial-safe-house-a-n...
--2013-- https://www.smithsonianmag.com/smart-news/where-will-japan-g...
--2016-- http://www.reuters.com/article/us-usa-wheat-gmo-japan/japan-...
I've been struggling with gluten sensitivity for 1.5yrs (been through the gastroenterologist circuit already, with 0 results) so your comment blew my mind.
Thank you! My email: chris [à] chris-hartwig.com
I’d be happy to provide more details to you if your interested in trialing this path.
Thanks for sharing your story.
I don't know anyone who has stuck to a strict FODMAP diet long-term.
That's not how the high fodmap issues work. Everyone has some tolerance level for fermentation in their digestive system. These people just have a lower tolerance so the total high FODMAP foods in their diet has to be lowered. You don't have to give up bread, past, etc. You just need to cut things down. And honestly it's usually easier to cut out other things, like certain fruits. The reason it's done by iterative exclusion is because you don't know just how much you need to cut out and it would be really harmful to your life to cut out more than necessary. So you remove one thing at a time until you've cut enough. Generally you start with the foods on the list that are your least favorite and go that way.
"Overall GSRS-IBS scores differed significantly during gluten, fructan, and placebo challenges; mean values were 33.1±13.3, 38.6±12.3, and 34.3±13.9, respectively (P = .04). Mean scores for GSRS bloating were 9.3±3.5, 11.6±3.5, and 10.1±3.7, respectively, during the gluten, fructan, and placebo challenges (P = .004). The overall GSRS-IBS score for participants consuming fructans was significantly higher than for participants consuming gluten (P = .049), as was the GSRS bloating score (P = .003). Thirteen participants had the highest overall GSRS-IBS score after consuming gluten, 24 had the highest score after consuming fructan, and 22 had the highest score after consuming placebo. There was no difference in GSRS-IBS scores between gluten and placebo groups."
Not to mention that they're explicitly trialling this with people "for whom celiac disease had been excluded". So an alternate conclusion could be "people without celiac disease but with self reported gut issues don't respond significantly differently to fructan, gluten, and placebo". Which is... not surprising?
The OP provided a link that doesn't go to an Elsevier-affiliated website.
Elsevier is an academic publisher that is a relic of a pre-digital world. Essentially, it leeches on universities, charging money for access created by academics,funded by the state, and peer-reviewed by volunteers for free. They justify their need to charge money by reasons such as hosting costs, but whenever someone tries to host their articles for free, they pull out the big guns.
Such actions, in particular, led to death Aaron Schwartz (see https://en.wikipedia.org/wiki/Aaron_Swartz ).
Elsevier is not liked around here.
Speaking of resources that anger Elsevier by hosting articles for free, Sci-Hub is one. In particular, you can read the full text of the article by going to https://sci-hub.cc/ and looking up the paper's DOI (10.1053/j.gastro.2017.10.040).
This full text is not available for free on the original publication link (nor on the NIH website). The study was funded by: the Extra Foundation Health and Rehabilitation, the Norwegian Celiac Association, the Throne Holst Foundation for Nutrition Research and the Wedel Jarlsberg Foundation - neither entity being Elsevier. (You can find this in the paper once you pay Elsevier to access it).
So yes. Oh, Elsevier.
N=59 which is enough to justify for a larger survey but probably not to garner the attention this piece is receiving.
This will trigger massive swings in how certain food groups are perceived, affect farmers, etc. Caution is required.
A french wheat producers syndicate has published web pages to say even coeliacs should eat gluten, just less of it... That's even the first article my mom found about gluten intolerance and she called me to tell me gluten intolerance isn't really a thing according to the internet. My guts and my gastroenterologist both disagree.
That's what happens when you listen to politics and silence scientists.
An interesting study would be take some "old world" wheat (that has not been impacted by the industrial-scale farming practices of the West), and see if the gluten-sensitive people still have the same reaction to that.
