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Comment by dominotw | Hacker News Reader

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.

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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.

We've found doctors to be pretty clueless on it, sadly... Which I guess is par for the course.

When you learn what it is that is keeping you in constant agony, it's surprisingly easy to give up, even if frustrating. ;)

Undoubtedly. It's come in other forms for me. I'm all the more grateful that all wheat/gluten does is make me fatter.

> 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?

Bacteria is alive, cooking it kills it.

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).

> toaster (obviously)

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.

My understanding is that oats only contain gluten due to cross-contamination by other grain during processing.

In Sweden you can buy special "pure oats" that are gluten free due to more careful handling.

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.

This is an oversimplification of gluten problems. DH for example does not necessarily go together with small intestine causing atrophy.

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!

What is DH?

A skin condition associated with Celiac Disease: https://celiac.org/celiac-disease/understanding-celiac-disea...

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.

Freakonomics Radio recently had an interesting episode on this: http://freakonomics.com/podcast/demonization-gluten/

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 .

maybe because other one isn't about gluten at all? http://bigthink.com/paul-ratner/its-fructan-not-gluten-thats...

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.)

Gluten free does not mean carb free or even carb reduced. What it does tend to mean is less processed food and more whole foods.

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.

Slashing carb intake’s benefits are psychosomatic? How do you figure ?

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.

It wasn't in your heads. But I think his point is that it may be in others'.

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).

Ketosis does some weird stuff.

Don't know why you got down voted - I had the same exact experience.

I’ve been seeing this for years. Started Keto off/on since 2010 and always lost weight. Never count calories. The science will catch up eventually.

I thought psychosomatic meant a physical change that’s caused by the mind?

I think you’re just talking about false attribution.

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