Stunning it was this hard to pin down an autoimmune disorder which is effectively a food allergy.
My daughter has celiac which we caught early (concomitant with T1D) although she is not as hypersensitive as some people I have met, it is still crucial to avoid all gluten as even without overt symptoms it effects overall growth and nutrition.
But some of our friends are so sensitive that even minuscule levels of gluten exposure cause intense distress within an hour.
You have a “wasting” disease which is clearly non-contagious. Is it not obvious to test various strict diets? I guess in advanced cases it takes months of a gluten-free diet for the intestine to start healing (years for full recovery) so short-term test diets would not have led to full recovery, but even if you just experiment with carb-free that would reduce gluten so much I would think someone would have caught onto this sooner!
Keep in mind the modern supermarket is a pretty recent thing. We take it for granted that you can get just about anything at any time of year, but it's not something most grandparents would recognise. Heck, even I find there are things in supermarkets that weren't around when I was a kid (Quinoa for instance).
So finding stuff without gluten might have been pretty hard.
Also with anything complex like medicine there are just so many confounding issues that until you have the actual cause, many things sound like they could be it. There would be lots of dead ends and things obscuring the the true cause.
> finding stuff without gluten might have been pretty hard.
Finding anything was pretty hard on its own. In the XIX century, famines due to bad-harvest years were still a thing - potato blight etc etc. It wasn't until early XX century that the combination of industrial practices and a well-established railway network made food scarcity (mostly) a thing of the past, since stuff could now be grown more intensively and then transported quickly all over Europe.
Until then, taking entire foodstuffs out of one's diet could mean the difference between eating and starving.
Definitely it’s not obvious that gluten specifically would be the cause, but seemingly obvious to test specialized diets?
So I guess I’m surprised people didn’t discover “avoid wheat” a lot sooner even if it took until the late 20th century to actually understand the mechanism.
Celiac disease is far more severe than what's now called "gluten intolerance". But maybe they're related.
I get that "Celiac disease results from genetic abnormal immune response to gluten."[0] I'm not sure what that means, in detail. Perhaps there's a particular allele of one of the immunoglobulin genes. But whatever it is, perhaps other alleles cause "gluten intolerance" of varying severity.
Combined with this with the role bread used to play. It was a massive part of diets until relatively recently when we turned bread bland and relatively nutrician free with mass production techniques.
One of the super-fun aspects of coeliac disease is sensitivity increases with lack of exposure to gluten. The longer you’re on the gluten free diet the worse the symptoms are.
Of course it could be that you never noticed how bad it was before.
You understand that T1 and T2 are very different diseases? That a Keri diet works extremely well for T2, but varies in efficacy for T1, ESPECIALLY in children?
Cutting out gluten really changed my life. I went through a phase where I was only eating every other day because I felt so shitty when I did eat.
When you end up with a disease like this it really exposes our blind spots in medicine. I even somewhat resent that doctors didn't identify this in me when I was young. It was 23 years of sinus headaches until a girlfriend did the research and told me to do an elimination diet.
While I had some digestion issues (high fructose foods, probably fructose malabsorption from my small intestine being wrecked) my main problem was sinus headaches. There seems to be an association between chronic sinusitis and celiac, but no studies backing that up. [1]
At the end of the day I've cut out gluten, sugar, caffeine, msg, and sodium nitrites as triggers to my sinus headaches. I went back and forth on a lot of these so I am quite sure of the relationship. I really did love bread, sugar, and caffeine and went back to them more than a few times.
The best I can describe the symptoms related to the sinus stuff is a withdrawal. For example, I feel OK when eating sugar regularly, maybe a medium bad headache here or there, but when I stop fully I get a horrible one, sometimes accompanied by throwing up, cold sweats, shaking, etc.
There is some research into opioid like effects of gluten. [2] I originally came across the concept on some fringe science about the bodies of people with autism treating gluten as an opioid (and advocating a gf diet for them). It resonated with me because the symptoms I experience are very much like a withdrawal. It's hard to talk about though because there isn't research backing it up.
If any medical students are reading this and want to study it, it's a pretty undiscovered field.
I had the exact same issue and solution. I don't think I am celiac and I ate gluten for over 20+ years. I used to get 3+ major sinus infections a year and doctors wanted to perform nasal surgery on me.
After having cut out dairy a few years earlier due to realizing I was lactose intolerant, I then experimented with cutting out wheat. All my sinus issues went away, my headaches went away, my depression went away, my brain fog went away.
I suggested this to a few family members, and it had the same affect when they cut the things out.
It is crazy that I did not have any doctors ever suggest this to me, and it was just a result of the food I was eating.
I wish there was more research and education that went into this, as I imagine it might be affecting quite a few people.
Medicine 200 years from now will be different. Doctors are largely ignorant of nutrition. When you go to the doctor, how often do they ask about the what you eat? Unless you really look unhealthy or you mention some correlation between the symptoms and a specific food, your diet is a lowly weighted factor in your unwell being. I think that will change, and many of the catalysts will be from patients who teased out the effects of nutrition on what ails them.
There is also a significant leakage of nutritional advise from sports science, and all this information is finding adherents/testers in the regular world and will eventually (after the pseudoscience is sorted out) have a corrective influence on medicine.
I think at some point Medical nutrition therapy (MNT) will be a lot more common and maybe even have specific practitioners, (like physical therapists) instead of being a doctor-nutritionist partnership. The practice will evolve and it will get standardised and taught to "specialists".
This is exactly my story as well. My life changed dramatically after I stopped eating wheat. I figured it out myself, despite the fact that doctor said I should keep eating wheat and according to my symptoms I should moderately eat animals fat. Like bacon and butter. Suggested diet made it worse! I never thought that Internet is better place to find a cure than clinic, but one day I just simply googled it and do not want to go back! I've tried couple times to eat bread and pasta and after few days I can feel the difference.
I have celiac disease, and I also regularly used to get sinus headaches in college and high school, but I thought that was moving away from east coast allergies that helped. I only occasionally get them now, I should track to see if they clusters with the other, more dramatically obvious gi symptoms when I accidentally have gluten.
Maybe it’s access to more gluten free food since leaving college!
Is this a known thing? Do you have any papers around the sinus headaches?
I mean, there are a lot of things that can cause sinus headaches. In a thread about Celiac Disease you're going to read anecdotes about Celiac Disease causing sinus headaches, but that doesn't mean it's what causes yours.
>Do you have any papers around the sinus headaches?
It is understudied, the first link discusses it a bit. A lot of celiacs report it but last I looked for papers I couldn't find any that weren't GI related.
As someone with diagnosed celiac disease, it took a very long amount of time for me to get diagnosed.
Already when I was around 10 years old I would go to the doctor and he'd say I might have irritated bowel syndrome but really, no treatment would help. I have memories of stomach pains so severe I'd bend over in pain.
It got better in my teens, or I got used to the pain, I can't really tell which. Many years later, when I was 25, I got internal bleeding and a pain so severe my doctor sent me to the ER for suspected appendicitis. However, after an MRI revealed nothing I was sent home without diagnosis.
My doctor finally sent me to get a biopsy to figure out what caused this and it showed that I had celiac disease. I've since followed a gluten free diet quite strictly, but I never get immediate or obvious symptoms so it's very hard for me to tell how well I'm doing. Some times I feel an unexplained tiredness or stomach pain, which probably means I did somehow eat gluten.
This is all to say that celiac disease is a very "murky" condition. Doctors don't always seem to know how or when to test for it (I suspect it's getting much better than 20 years ago). The actual test is quite invasive (again, I've seen there's headway in this space). And even if you confirm that you have celiac disease, it's not always easy to monitor your track record because the damage to your insides is long term and at least in my case I only seem to be able to sense it in more severe transgressions.
The scariest part of it all is the long-term dangers of celiac disease. Eating gluten with celiac disease is linked to a long list of deficiencies and other issues, leading to fragile bones, tiredness and even nervous system disorders (numbness, seizures, headaches, anxiety, etc).
I hope we get better at diagnosing this, it might turn out to not be as rare as we thought!
I can't seem to tell the difference between Celiac and gluten sensitivity. They are supposed to be different but I can't tell how. I've asked my GP and GI but they seem to think they are exactly the same.
Anyone following any specific diet for one vs the other. Its all very confusing.
Coeliac disease is a genetic autoimmune disorder where your immune system attacks the small intestine causing atrophy of the villi which leads to lack of nutrient absorption. It’s diagnosed by the presence of anti-Gildain antibodies in the blood and an intestinal biopsy showing the atrophy of the villi.
Gluten sensitivity is a condition where ingestion of gluten causes digestion problems and sometimes intestinal distress. The diagnosis is by elimination diet. There’s some research that suggests this is due to FODMAP digestion issues with the gut bacteria and it may be resolvable by removing and slowly reintroducing FODMAPs.
In both cases the solution is a gluten free diet. All traces of gluten must be removed from the diet. That’s everything that contains wheat, barley, rye and oats, along with everything derived from those grains and anything that has been in contact with those grains. You’ll have to read a lot of labels, and only eat out at restaurants that are known to have a proper allergy control policy. Also if coeliac specify when ordering as diet-fad gluten free people cause a lot of problems.
I have coeliac disease, feel free to ask anything.
To add to that, celiac can be so bad that even the smallest cross contamination can be devastating.
Think about it like this:
You cut some raw chicken on a cutting board, then wipe(not wash) the cutting board and reuse it with something else.
That cutting board is now likely to contaminate anything else you put on it with salmonella.
The same is true for gluten. While the effects of gluten contamination is not likely to be be fatal from one contamination, a celiac will be sick for the next week or two and causes lasting damage to the small intestine.
Celiac is not cured, but with a totally gluten free diet within approx 5 years the damage to the villi has seen to be mostly healed (depends on the individual). Each contamination sets this back. Important to note that celiacs still must not ever have gluten even after the villi have recovered.
My wife has celiac, I have a gluten sensitivity (causes migraines, brain fog, other intestinal issues). When we go out we just say we both have celiac.
So many restaurants claim to be be gluten conscious but really have no idea... Sometimes it's obvious ("hey, I can see that you put croutons on this and then took them off"), often not without seeing the kitchen, though.
When we found out my wife has celiac we had to replace all of our cookware, toaster (obviously!... But didn't think about it at first), cooking utensils, pots and pans, etc.
The good news of celiac is that it is easy to treat and feel much better relatively quickly. Societal nicities like going to to a restaurant, eating at a friend's or family's house, having a drink, etc are all much more stressful, though.
I can't imagine having to adjust that way. It's awful. I love everything wheat so much.
I'm sure much of the lax approach to celiac meal care is the recent "gluten free" trend that caused many uninformed people to think it wasn't something worth taking seriously.
My girlfriend's stepmother has celiac and it was eye-opening to learn about. She's kicking ass in spite of having to eliminate easy energy sources like that—Iron Man worlds this fall in Kona.
It certainly explains why her dad went so crazy on the baguettes when we went out for dinner, though :)
I think it is one of those things, where attitude goes a long way, because as far as curve balls live throws at you go, coeliac disease really is pretty easily dealt with and, more importantly, the negative effects to your body entirely avoidable when cared for properly. There is a huge amount of industry effort spent in that field thanks to a lot of people talking themselves out of gluten due to various real and made up reasons, which makes substitutes for most things readily available (albeit still at a pretty steep premium).
The shittiest part really is the whole disease flying below the radar for so long and people suffering severe pain and internal damage years or even decades on end. Due to awareness having increased immensely that should thankfully happen less and less from here on out.
> You cut some raw chicken on a cutting board, then wipe(not wash) the cutting board and reuse it with something else. That cutting board is now likely to contaminate anything else you put on it with salmonella.
> When we found out my wife has celiac we had to replace all of our cookware, toaster (obviously!... But didn't think about it at first), cooking utensils, pots and pans, etc.
Can you explain this more? That doesn't really make sense to me. Salmonella is a bacteria. And on a unwashed surface can probably start growing. But gluten? Can't you just wash everything really well? The toaster makes sense to me, but even then, can't you sacrifice a few pieces of gluten free something and turn it on for 5 minutes to burn things off?
Gluten is not alive. Perhaps cooking at a very high heat and charing it maybe could break it down enough?
Cleaning, very well, works for some things... But Teflon, anodized aluminum, etc are all quite porous... use at your own risk (some say these aren't safe materials to cook with anyway).
I removed the outer metal casing, put the whole thing in the dish washer. Put the metal casing back afterwards. The toaster was like brand new and worked fine.
I had no clue that such trace amounts would have a meaningful effect. Very interesting. That makes eating out much more difficult. How do you ever have confidence that prepared foods are truly gluten free?
Eating out is hard. Where we are it's pretty difficult simply because most people here don't know about celiac at all. There are apps similar to Yelp to help... "Find Me Gluten Free", "Allergy Eats" to name a couple... Where you can read reviews of other people about the place specifically focused on GF, see what other celiacs have said about it, etc.
There are two quite yummy, dedicated GF places here that are very nice to have.
Yeah this is my understanding too. Quaker Oats for example wrote: "Yes, oats are naturally gluten-free. However, during farming, transportation and storage, gluten-containing grains like wheat, rye, barley and spelt may be unintentionally introduced."
Just like Sweden, in North America you can buy gluten free oatmeal that's made specifically to not include cross contaminates.
For the most part cross-contamination is the major issue, but it’s a bit more complex than that. Oat proteins are similar to the giladins in wheat that trigger coeliac disease. Certain oat cultivars are more similar than others. This means that some varieties of oats and some coeliac sufferers are not compatible. I can’t eat oats.
Originally oats were considered gluten containing until a new more sensitive enzyme-based gluten test was developed which does not trigger for non-contaminated oars. Unfortunately enzymes aren’t how coeliac disease works.
You may have just helped me identify celiac disease. I've had gastro issues for over 10 years. I've also experienced the DH symptoms with no resolution. Tuesday I have a gastro/endoscopy scheduled to check for issues. This feels like another clue on the long road to figuring this all out. Thank you!
Celiac is an auto-immune disorder, an allergy. Celiac sufferers who consume even small amounts of gluten will have their digestive system more or less shut down for a period of up to several days afterward. Gluten sensitivity is similar to lactose intolerance (and is closely related to FODMAP sensitivity and IBS), for those folks consuming gluten leads to digestive problems. Just as many people with lactose intolerance can consume some lactose if they are careful the same is true for many people with gluten sensitivity, but also the severity of symptoms vary greatly and some people find that playing russian roulette with their gut is too dangerous so they seek to eliminate it from their diet entirely.
That was interesting, thanks. The story about the red cross food delivery of wheat made me think of whenmy first symptoms were, and it was when I was working at Domino's as a young man and practically lived on pizza... Unfortunately that was 12 years prior to diagnosis! Life has been much much better since .
One is definitely a real condition. The other... well, there's reason to be skeptical - whether it is actually gluten or whether it is psychosomatic. I'm more than half suspicious that most of the self-reported benefits of avoiding gluten are really benefits of also slashing carb intake.
I'm pretty much certain there is something to gluten sensitivity. Starting from when I was a teenager I used to have stomach cramps and diarrhoea about twice a week. This went on for 10+ years. Being a kid I assumed this was just a thing some people have, and never really spoke about it to anyone. The day I stopped eating bread and other large portions of gluten was the day this issue went away in full. I have since taken the blood test for celiac and it came back negative (my doctor said soy sauce in my diet should be enough to set off the test, although to be fair he was not 100% confident on this point). Any time I try reintroducing bread, egg noodles, etc., the cramps come back like clockwork. I can take unlimited rice and gluten-free bread without triggering symptoms.
My suspicions are that (1) there is a sub-celiac-diagnosis level of irritation which people are experiencing and addressing by cutting out gluten, and (2) maybe many people are not comfortable being vocal about their digestive issues in public?
The medical industry has a big track record of treating unknown disorders as psychosomatic and writing off sufferers until they are lucky enough to figure out that particular disease. Consider that IBS is a disease of exclusion and how poorly understood gut bacteria is right now. It's not always going to be reliable, but it is worth listening when a ton of people complain and proceed to vote with their wallets as well.
Some "gluten-sensitive" people (e.g. me) will request a GF meal because it's a relatively standard checkbox choice that can be accommodated without extra overhead, unlike a FODMAP diet; it's not that we imagine we're kinda sorta celiac. And wheat does stand out among foods found to disagree with me. (By antibody test if you're going to bring up the psychosomatic. Yes, mind-body issues happen but they seem to be overused to dismiss people's experience.)
Both my father and my sister are coeliac, and find a lot of packaged gluten free foods (biscuits, breads, cakes, etc) have more sugar than the normal versions to compensate for frankly generally tasting worse...
Fresh food is fine, but in general people deciding to go gluten free because it's trendy and "healthy", without having done a proper elimination trial or having coeliac disease, aren't actually making a good choice.
You forgot having active anti-bodies in their feces. I don’t have celiacs but I have done a fecal test and it showed sensitivity to gluten, oat, potato, and bean.
It's psychosomatic in that people think it's cutting gluten that is making them feel better - when in fact it may be simply reducing carb intake that is the primary cause.
It's much like how I observe folks on Atkins where it really works - but the magic isn't so much the ketosis itself - they are just unknowingly drastically reducing calorie intake. The real "body hack" of any diet is the one on the brain, imo.
My brother and I are celiac. Atkins diet was how my dad found what not to eat back when going gluten free wasn't a thing. As someone who had a ton of health problems and solved them by cutting out foods, it's not in our heads. I used to starve myself because not eating is what felt best. Now I know what not to eat and feel great.
I dunno about that. I've monitored calorie intake while keeping to an under-40g allotment of carbs per day. I was still eating north of 2500 calories a day (which was less, but not that much less, than before--about a 300 calorie deficit per day), working an office job, and exercising less than I should. One day a week was a cheat day, where I not only permitted myself but frankly demanded that I put all sorts of high-calorie horrible things into my face. I'd regularly end up around 4000-5000 calories every Saturday (until I stopped liking those things--also an interesting side effect).
I lost fifty freaking pounds. Off Chipotle salad bowls and shawarma salads (and I was already eating those things, just...now sans rice).
My daughter has celiac which we caught early (concomitant with T1D) although she is not as hypersensitive as some people I have met, it is still crucial to avoid all gluten as even without overt symptoms it effects overall growth and nutrition.
But some of our friends are so sensitive that even minuscule levels of gluten exposure cause intense distress within an hour.
You have a “wasting” disease which is clearly non-contagious. Is it not obvious to test various strict diets? I guess in advanced cases it takes months of a gluten-free diet for the intestine to start healing (years for full recovery) so short-term test diets would not have led to full recovery, but even if you just experiment with carb-free that would reduce gluten so much I would think someone would have caught onto this sooner!