A Food Shortage Revealed the Cause of Celiac Disease
atlasobscura.com
atlasobscura.com
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!
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.
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.
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 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.
Of course it could be that you never noticed how bad it was before.
Not everyone with undiagnosed celiac disease is going to be like that
Eg
https://www.celiac.com/articles.html/celiac-disease-amp-rela...
More about this “food shortage”: https://en.m.wikipedia.org/wiki/Dutch_famine_of_1944–45
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.
1. http://www.aaaai.org/ask-the-expert/coeliac-disease-sinusiti...
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?
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.
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.
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".
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!
Anyone following any specific diet for one vs the other. Its all very confusing.
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.
I lost fifty freaking pounds. Off Chipotle salad bowls and shawarma salads (and I was already eating those things, just...now sans rice).
Ketosis does some weird stuff.
I think you’re just talking about false attribution.
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.
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.
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.
In Sweden you can buy special "pure oats" that are gluten free due to more careful handling.
Just like Sweden, in North America you can buy gluten free oatmeal that's made specifically to not include cross contaminates.
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.
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 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'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 :)
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.
There are two quite yummy, dedicated GF places here that are very nice to have.
> 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).