This makes me wonder. I suspect I have celiac's disease because anytime I consume gluten I have all of the unpleasant symptoms. I asked my GP whether I should get tested so that I could treat it and he said that if I've already solved it by removing gluten from my diet to just do that, because that's all the testing is going to tell me anyway.
However, there is one condition under which I can eat bread et al: when I've been riding bikes all day. I've never been quite sure what to make of it, figuring it could just be because I'm more dehydrated than usual, or higher metabolic rate somehow allows me to absorb nutrients that I would have a harder time handling while sedentary. Now I'm wondering if being flooded with endorphins just prevents or masks the inflammation associated with celiac's.
I wish there was more treatment available than a strict GF diet, because I really love all things stretchy and glutenous.
As a coeliac diagnosed at 36, I'd urge you to get tested - as TFA documents, coeliac disease's symptoms can present in other conditions too, and CD is a risk factor for other conditions like schizophrenia.
I do miss pizza, beer & bread. And I really miss just being able to order anything from a menu when I'm out with friends. But having to avoid gluten has opened up a tonne of new foods to me, and I've gotten pretty good at cooking (by necessity!) too.
I was gluten free for a few years due to intestinal problems until I got tested (was negative) and I found that the restrictions made me more creative and resourceful when it comes to cooking.
A definitive diagnosis requires an endoscopy (at least it did a few years ago when my daughter was diagnosed) but there's a blood test which is indicative. It's probably worth it for you to get the blood test.
I had the same as you, the GP made me do a blood test which was negative, my symptoms were being bloated and farting a lot (with awful smell). I stopped eating gluten for a while then slowly reintroducing it after couple of month in a non refined form (muesli). Now I can handle it much better than before but I suspect that could have been IBS and not only a gluten intolerance. Check out if lactose isn't the culprit, they put it in too many things that you wouldn't expect. Also having a good microbiota is really important, so you could give a try to Probiotics and PrEbiotics.
Someone close to me has Celiac disease, and getting an official diagnosis will let you do more than just eliminate gluten. For one thing, you could participate in one of the multiple ongoing drug trials for Celiac that are looking for participants.
The Celiac foundation has a list of them if you're interested, but you'll need a Celiac diagnosis to be eligible.
Are they at a sufficient point to be worth enrolling in? I've reviewed the foundation list but beyond some promising phase 3 items it was short on what's next.
There may still be value in getting tested. A friend of mine was certain gluten was the source of her abdominal issues and avoided it religiously. She did mostly okay until the symptoms got suddenly worse and it was determined it was actually her gallbladder. It was bad enough that they operated despite the pandemic limits on elective surgery.
Problem is that gluten is used everywhere in the food industry. Also, wheat varieties are engineered to output a lot of it. So at some point our body says "no more".
As soon as you stop eating what's bad for you, your body is going to forget that it once tolerated what is not tolerable.
So it's a one-way street. Once you stop you can't go back. I feel indeed much much better since I stopped gluten and milk-based stuff. But yes, it becomes a social problem as friends don't understand and in some countries, restaurants just don't give a sh*t and blatantly lie when they don't know, it's not fun to spend the evening with a distressed belly after eating what's wrong for your body.
I went pretty strictly gluten-free for a number of years, and it was a really good thing for my general feeling of health. No celiac diagnosis, but just experimentally trying it out I felt like I'd reverse-aged 10 years within a week of cutting out all wheat products (more energy, easier time waking up, no bloating, happier bathroom visits, etc.) No real other diet change, mind you, I'd still eat fried foods, junk food, whatever.
What was really unusual about this was, a year ago I tried the keto diet (very low carbs), strictly for several months, also to see how I'd feel. It was too hard to keep up, but after doing it for several months, it seems to have "reset" my digestive system, to where I can handle wheat again without any ill effects. No idea how or why, but at least if I start to feel like my digestion is shitty again I know I can just cut out wheat pretty easily.
This. I don't think I have celiac but I have issues with histamine. Went on Keto and probiotics (Bacillus subtilis being in the mix doing the trick for me). I was very lethargic and I couldn't drink alcohol, no alcohol free beer either and certain foods wouldn't work either. Eating left over lasagna 2 days in a row? Migraine! The kind where you just wanna throw up.
With the probiotics and keto I can tolerate a few beers though I just don't do it any longer because it still throws my digestive system off if I have too much. But alcohol in geberal is no longer a problem. No migraines (sure if I just drink too much I get a hangover like everyone else but I no longer get a whole day migraine from having one 333ml bottle of alcohol free beer).
I no longer do keto (did the real 20g of carbs max per day for over a half year). Doctor checked for ketones and I was definitely in ketosis and all of my blood markers that were off went into normal. Except for total cholesterol but even that improved. I mean get this I was on the max dose of statins before keto without any significant improvement. With keto, (e.g. smoked salmon with mayonnaise and a boiled egg makes a meal) even my cholesterol improved and I didn't even take any statins any longer.
Our regular western diet is just totally effed up.
We use spelt flower for everything now and I can eat that and I looooove my home made pulled pork. It's quite easy to keep up keto when there's no sugar in the house I find but since the family still craves it, I sneak in way too much of it into my diet. But I still try to keep carbs to a max of ~75g.
And I can tell you, being able to have a nice scotch again without regretting it for the next two days is awesome!
If you’ve already cut out gluten, you’ll have to start eating it again for the test, which is...not pleasant. And for a long time too. (I’ve been given different durations for the challenge period, but they were all at least 3 weeks long when I last investigated this.) This is why I’ve never done the test.
Random tip: if you accidentally expose yourself to gluten, taking Benadryl right away can help with the flu-y sort of inflammatory symptoms. You’ll still get the gastric distress, but you might not feel like you have the flu for the next week, which for me is the worst part.
I don’t know if there are “degrees” to celiac severity but I only get diarrhea, gas, tummy ache as far as I know. Definitely nowhere near as severe as the flu.
I know one person who has been diagnosed with CD, and several others (myself included) who have lesser, significantly varying levels of reactions to gluten.
If eating gluten is that unpleasant for you why wouldn't you get the biopsy? I would want to know 100%.
EDIT: in the absence of antibodies the biopsy would still show:
-Crypt hyperplasia with a decreased villi/crypt ration. Crypts are grooves between the villi, which are the small fingerlike projections that line the small intestine and promote nutrient absorption. Crypt hyperplasia is when the grooves are elongated compared to a normal intestinal lining which has short crypts.
-Blunted or atrophic villi. This is a shrinking and flattening of the villi due to repeated gluten exposure.
> If eating gluten is that unpleasant for you why wouldn't you get the biopsy?
Because getting the test would require about a month of agonizing pain with constant diarrhea, perhaps? Just to get a formal confirmation of something they're already pretty sure of.
The genetic test could be helpful. It took me 15 years to figure out that CD was the source of some chronic issues.
The genetic test can rule in / rule out - and when combined with your history would be called a diagnosis by many physicians. I was in your same situation and couldn’t contemplate eating gluten again after understanding life without it.
Read about FODMAPs and the FODMAP diet - odds are you probably aren't celiac. Another thing to consider if you are on PPIs like Prilosec or take Pepcid or similar histamine blockers. Especially the former, but both can really muck with intestinal health.
For my wife it was the other way around: she went to a nutritionist and tried to eliminate fructose etc. (similar to FODMAP), but eventually it turned out it was simply gluten-insensitivity.
This is not entirely the same as being celiac. You can still have very small amounts of gluten, whereas someone being celiac should not eat any at all.
My wife has long figured she has a gluten sensitivity. However, many doctors and researchers believe there is no mechanism for that and that it isn't really gluten at all, but something else.
We have found that it isn't so much the quantity of gluten, but the quality of the product. For example, a piece of cheap, white bread has bad effects, but a piece of whole grain, organic bread or sourdough is usually fine. This could be fodmaps, but we have tried cutting those without much effect.
Right now, our working theory is contaminants and mimic weeds that make their way into wheat and other cheaper products where as the supply is a bit more controlled in the higher end and organic products. But we are still mostly befuddled.
Please be careful: if you really do have celiac‘s, then gluten has a short-term effect on your body (let’s call those „bathroom-related“), and yeah, maybe under certain circumstances you don’t experience these, which is certainly nice.
But mind you: it also has a long-term effect, one that you will realize only much later, if you don’t keep your diet absolutely strict! And I’m pretty sure some biking won’t prevent these effects! It’s slowly killing your guts - please read up on it.
Thanks. Your comment feels like the most important one here. I know I’m kind of self-diagnosing in a folksy way by finding a diet that works for me, and that’s probably not a good idea if I do have celiac’s. I’m gonna see if I can find a doctor that can give me a test. It might take a minute because I live in Asia and it’s a very rare disease here.
Plants usually don't like their seeds eaten (unless of course they're sure that you'll not digest it or somehow still help them reproduce). And we didn't co-evolve with grains much. We domesticated them fairly recently.
Unlike many other toxins plants put in their seeds to protect them, gluten doesn't seem to have been made just for defense. They just came up with a protein to feed their embryos... and turns out it was also toxic to herbivores. Of course, herbivores which co-evolved with these plants evolved ways to digest gluten... but when humans adopted it, we ran into problems.
The good thing is most of these problems can be avoided by not eating what plants don't want us to eat.
Doesn't it only affects like 1% of the general population ? It's an auto immune disease, not a "plants don't want use to eat that" disease. If anything it's the opposite of what you're saying, most people are perfectly evolved to eat seeds, a tiny minority have a genetic issue that makes them unable to.
No, we didn't co-evolve with plants eating their seeds. We found out ways to process them to make them edible and domesticated them, much later and have been doing so for a very short time. Most of the ones we eat are still toxic to us. Some of us are affected more than others.
I suspect the prevalence is also rising because people don't just sicken and die mysteriously, because they can't eat the food that makes up 75% of their calories, due to Celiac now.
Yes, sprouting does waste away some of these proteins which are not good for us. Then, we're left with carbs which we can process much better, and fibre which we don't process but it's mostly OK to eat.
But, overall, I think we're better off eating other things.
My wife has asymptomatic CD so this has been an interesting read for me. One thing in particular that I learned:
>Gliadin epitopes from wheat gluten and related prolamins from other gluten-containing cereal grains, including rye and barley, can trigger celiac disease (CD) in genetically susceptible people
It never dawned on me that CD is something that develops with time, and not something that victims are born with. I.e., if someone who is genetically susceptible to gluten, never consumes gluten during the course of their childhood, they might not ever develop CD. That's fascinating...and it also might explain why cultures that consume rice as a staple grain have lower rates of CD (Asia: .6%).
>For example, DPP IV shows higher affinity for gliadin and casein than for substance P (SP)
What is substance P (SP)? It seems to be a by-product of one of the processes that enhyances your chances of developing gluten-related but the paper doesn't expand on this. The chart shows it to be a precursor.
> Substance P (SP) [...] is a neuropeptide, acting as a neurotransmitter and as a neuromodulator.
> Substance P is released from the terminals of specific sensory nerves. It is found in the brain and spinal cord and is associated with inflammatory processes and pain.
It's funny. I never understood the food coma thing. Never experienced it. Sure you're full after overeating on pizza but that was it.
Until I did keto. Went to a friend's house and they made pizza in their pizza oven, so sure I ate some. About a half hour later I was fast asleep on their sofa...
48 comments
[ 3.3 ms ] story [ 87.6 ms ] threadHowever, there is one condition under which I can eat bread et al: when I've been riding bikes all day. I've never been quite sure what to make of it, figuring it could just be because I'm more dehydrated than usual, or higher metabolic rate somehow allows me to absorb nutrients that I would have a harder time handling while sedentary. Now I'm wondering if being flooded with endorphins just prevents or masks the inflammation associated with celiac's.
I wish there was more treatment available than a strict GF diet, because I really love all things stretchy and glutenous.
I do miss pizza, beer & bread. And I really miss just being able to order anything from a menu when I'm out with friends. But having to avoid gluten has opened up a tonne of new foods to me, and I've gotten pretty good at cooking (by necessity!) too.
I can also recommend Udi's GF bread, a bit pricy and you keep it frozen, but it defrosts in the toaster easily and is actually pretty decent.
I'm afraid you're out of luck for GF Pizza, of most of the frozen ones the cardboard packaging tastes better.
The Celiac foundation has a list of them if you're interested, but you'll need a Celiac diagnosis to be eligible.
As soon as you stop eating what's bad for you, your body is going to forget that it once tolerated what is not tolerable.
So it's a one-way street. Once you stop you can't go back. I feel indeed much much better since I stopped gluten and milk-based stuff. But yes, it becomes a social problem as friends don't understand and in some countries, restaurants just don't give a sh*t and blatantly lie when they don't know, it's not fun to spend the evening with a distressed belly after eating what's wrong for your body.
What was really unusual about this was, a year ago I tried the keto diet (very low carbs), strictly for several months, also to see how I'd feel. It was too hard to keep up, but after doing it for several months, it seems to have "reset" my digestive system, to where I can handle wheat again without any ill effects. No idea how or why, but at least if I start to feel like my digestion is shitty again I know I can just cut out wheat pretty easily.
With the probiotics and keto I can tolerate a few beers though I just don't do it any longer because it still throws my digestive system off if I have too much. But alcohol in geberal is no longer a problem. No migraines (sure if I just drink too much I get a hangover like everyone else but I no longer get a whole day migraine from having one 333ml bottle of alcohol free beer).
I no longer do keto (did the real 20g of carbs max per day for over a half year). Doctor checked for ketones and I was definitely in ketosis and all of my blood markers that were off went into normal. Except for total cholesterol but even that improved. I mean get this I was on the max dose of statins before keto without any significant improvement. With keto, (e.g. smoked salmon with mayonnaise and a boiled egg makes a meal) even my cholesterol improved and I didn't even take any statins any longer.
Our regular western diet is just totally effed up.
We use spelt flower for everything now and I can eat that and I looooove my home made pulled pork. It's quite easy to keep up keto when there's no sugar in the house I find but since the family still craves it, I sneak in way too much of it into my diet. But I still try to keep carbs to a max of ~75g.
And I can tell you, being able to have a nice scotch again without regretting it for the next two days is awesome!
Random tip: if you accidentally expose yourself to gluten, taking Benadryl right away can help with the flu-y sort of inflammatory symptoms. You’ll still get the gastric distress, but you might not feel like you have the flu for the next week, which for me is the worst part.
EDIT: in the absence of antibodies the biopsy would still show:
-Crypt hyperplasia with a decreased villi/crypt ration. Crypts are grooves between the villi, which are the small fingerlike projections that line the small intestine and promote nutrient absorption. Crypt hyperplasia is when the grooves are elongated compared to a normal intestinal lining which has short crypts.
-Blunted or atrophic villi. This is a shrinking and flattening of the villi due to repeated gluten exposure.
https://celiac.org/about-celiac-disease/screening-and-diagno...
Because getting the test would require about a month of agonizing pain with constant diarrhea, perhaps? Just to get a formal confirmation of something they're already pretty sure of.
The genetic test can rule in / rule out - and when combined with your history would be called a diagnosis by many physicians. I was in your same situation and couldn’t contemplate eating gluten again after understanding life without it.
This is not entirely the same as being celiac. You can still have very small amounts of gluten, whereas someone being celiac should not eat any at all.
We have found that it isn't so much the quantity of gluten, but the quality of the product. For example, a piece of cheap, white bread has bad effects, but a piece of whole grain, organic bread or sourdough is usually fine. This could be fodmaps, but we have tried cutting those without much effect.
Right now, our working theory is contaminants and mimic weeds that make their way into wheat and other cheaper products where as the supply is a bit more controlled in the higher end and organic products. But we are still mostly befuddled.
But mind you: it also has a long-term effect, one that you will realize only much later, if you don’t keep your diet absolutely strict! And I’m pretty sure some biking won’t prevent these effects! It’s slowly killing your guts - please read up on it.
> A human study in 2089 elderly individuals looking for possible persistence of anti-gliadin antibody
⊙.
Unlike many other toxins plants put in their seeds to protect them, gluten doesn't seem to have been made just for defense. They just came up with a protein to feed their embryos... and turns out it was also toxic to herbivores. Of course, herbivores which co-evolved with these plants evolved ways to digest gluten... but when humans adopted it, we ran into problems.
The good thing is most of these problems can be avoided by not eating what plants don't want us to eat.
10% have the genetics, 1% have Celiac - although that number is rising with awareness.
But, overall, I think we're better off eating other things.
>Gliadin epitopes from wheat gluten and related prolamins from other gluten-containing cereal grains, including rye and barley, can trigger celiac disease (CD) in genetically susceptible people
It never dawned on me that CD is something that develops with time, and not something that victims are born with. I.e., if someone who is genetically susceptible to gluten, never consumes gluten during the course of their childhood, they might not ever develop CD. That's fascinating...and it also might explain why cultures that consume rice as a staple grain have lower rates of CD (Asia: .6%).
- genetic pre disposition
- gluten in diet
- activation (or trigger)
For a patient to have CD.
What is substance P (SP)? It seems to be a by-product of one of the processes that enhyances your chances of developing gluten-related but the paper doesn't expand on this. The chart shows it to be a precursor.
Thanks.
> Substance P (SP) [...] is a neuropeptide, acting as a neurotransmitter and as a neuromodulator.
> Substance P is released from the terminals of specific sensory nerves. It is found in the brain and spinal cord and is associated with inflammatory processes and pain.
Until I did keto. Went to a friend's house and they made pizza in their pizza oven, so sure I ate some. About a half hour later I was fast asleep on their sofa...