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According To Recent Data, Gluten-Free Doesn't Seem To Be Enough


Gfresh404

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Gfresh404 Enthusiast

Just wanted to share Open Original Shared Link. Frankly, I found it a little frightening and a bit of an eye opener as I was under the impression that a gluten-free diet should return a person to normal. I probably shouldn't of been so naive.


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  • Replies 53
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Skylark Collaborator

Dang, that's some impressive marketing of a 70-year old diet that's available for free. :lol:

I've pretty much put that story together in my head from reading the same articles. It's really nice to see someone post it with all the literature references. This stuff about not healing is for real. I was diagnosed with vitamin D deficiency 4 years after I went gluten-free.

mushroom Proficient

I agree with you Skylark. I think the time period posited was way too short. Healing continues to take place long after the two-year mark. I am still healing over four years into it. Depending on the level of damage and the degree of deficiencies, and the other intolerances we develop due to leaky gut, and healing what they do to our body, it takes a loooongg time. And from what I have read, we may not ever re-attain the ability to absorb all nutrients to the levels we formerly did, and will need to supplement maybe forever, scd or not. :P So really, there's nothing new I learned there that I haven't already learned here or just in general reading. I probably don't need to read the rest of his series - I could probably write it :ph34r:

It is only the most over-optimistic who think that when you turn off the gluten faucet the water stops flowing :lol:

Skylark Collaborator

I take supplements by the handful or I do not feel good at all. My insomnia creeps back and I get depressed. I never understood why I needed so many vitamins until I hung around here and realized that gluten-free takes a long time and that it's not enough for everyone.

I really like how I feel on SCD. My asthma goes away! I'm challenging salicylates this week and if I tolerate them I will have enough foods on this elimination diet to stop eating starches again.

mommida Enthusiast

I have been gluten free about 7 years. You really have to supplement vitamins and minerals. Gallbladder still had to be taken out 2 years ago too.

Is it just me or does it seem like there has been "sales trolls" here lately?

Skylark Collaborator

I have been gluten free about 7 years. You really have to supplement vitamins and minerals. Gallbladder still had to be taken out 2 years ago too.

Is it just me or does it seem like there has been "sales trolls" here lately?

Gfresh isn't a troll at all, and it's unfair to accuse him of such. He's young, smart, and trying to figure out why he's still sick. That article is really good, even if it is from a site trying to sell meal plans.

mommida Enthusiast

I think the blocked post from yesterday has me suspicious.

Sorry Gfresh, didn't mean to call you a troll. :blink:


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tom Contributor

Does no one else see that article as overly alarmist?

We see plenty of highly-affected celiacs/NCGIs online but percentages have to be skewed by the more affected being online more, continuing the search for health.

I was amazed when I joined yahoo's bay area celiac group. Seemed out of ~30 ppl, only 2 or 3 still had any celiac-related problems at all.

It shouldn't be a news flash that scarred tissue doesn't always 100% heal.

Thinking not so much flattened villi as scalloping would/could be analogous to scarring, but I don't know enough biology to know. I know my own past gut pain felt more seriously physiological than flattened villi.

Skylark Collaborator

I guess I don't see it as alarmist because I still have some GI trouble gluten-free that GAPS/SCD style eating addresses. I also developed Hashimoto's and a vitamin D deficiency two years after going off gluten.

Takala Enthusiast

I was so messed up, pre gluten free, I continue to be pleased with what I have at least achieved, and didn't expect. :rolleyes: I have read literature claiming that once I had "x, y, z" problems that I was going to be stuck with it, and I have been told by physicians the same thing, that I could not make myself better with diet. Hmmmph.

Do I even want to bother to look at this link ? I still have to take vitamin mineral supplements, duh !

tom Contributor

I guess I don't see it as alarmist because I still have some GI trouble gluten-free that GAPS/SCD style eating addresses. I also developed Hashimoto's and a vitamin D deficiency two years after going off gluten.

Oh I have plenty of post-gluten-free GI & non-GI issues as well. I'm saying that most celiacs don't, imo, and that makes the article alarmist for most ppl.

jackisue Newbie

I might be more inclined to take the medical research quoted more seriously if they didn't always refer to your intestines as your "gut." LOL. Just saying.

J

Gemini Experienced

Does no one else see that article as overly alarmist?

We see plenty of highly-affected celiacs/NCGIs online but percentages have to be skewed by the more affected being online more, continuing the search for health.

I was amazed when I joined yahoo's bay area celiac group. Seemed out of ~30 ppl, only 2 or 3 still had any celiac-related problems at all.

It shouldn't be a news flash that scarred tissue doesn't always 100% heal.

Thinking not so much flattened villi as scalloping would/could be analogous to scarring, but I don't know enough biology to know. I know my own past gut pain felt more seriously physiological than flattened villi.

I haven't even bothered to look at this article because there has already been enough alarmist stuff printed about Celiac without adding to it with another. I do agree with you Tom and if people have the expectation that they probably won't heal, then they probably won't.

I was in pretty bad shape at diagnosis with virtually no villi left yet, after 7 years, feel great. I also cannot tolerate much dairy either so I guess maybe I haven't healed healed 100%. Who cares? This is why God designed a back up plan for the small intestine. He gave us 22 feet, with overlap on the absorption front, so if a part of it were compromised, then another portion would take over. I think the numbers of those who don't heal to the point where they cannot function normally after giving time for healing, is pretty low. Maybe this is designed to keep people afraid and running to doctors all the time.....good for business. I have 3 other autoimmune problems besides Celiac so I'm not someone who only had symptoms for a week.

I suffered long term but once diagnosed, healed well enough over time that I live a completely normal life. I find that those who still consume gluten and eat like most Americans are always complaining about their medical problems and have many more problems than I do.

As you age, body parts are not always going to work perfectly. That's normal for everyone. I think if gluten free were not enough, there would be an epidemic of people who just would not heal. The incidence is small and is usually the result of other conditions that come with a delayed diagnosis of celiac or illnesses that co-exist with it, like Crohn's or colitis.

mushroom Proficient

I might be more inclined to take the medical research quoted more seriously if they didn't always refer to your intestines as your "gut." LOL. Just saying.

J

I don't know.... it takes 'guts' to deal with celiac! :lol:

jackisue Newbie

I don't know.... it takes 'guts' to deal with celiac! :lol:

Ha!! True story!!

sreese68 Enthusiast

I don't know.... it takes 'guts' to deal with celiac! :lol:

So true. Some days I'm not sure I have the stomach for it.

:)

GFinDC Veteran

There was a paper linked a while back about celiacs developing some kind of brain/nueral issues even after being on the gluten-free diet. Brain rot? Not sure, it was something like that. Another article posted here recently said something about the villous crypt spacing not returning to normal after a couple years.

I don't think I have ever been "normal" myself so I guess I won't worry about it. The truth is I feel much better on the gluten-free diet regardless of being normal or not. I figure it is good to be aware of these things but not get too concerned about it either.

Hmm, seems like they said most of those bad effects were only likely to happen to people new to the gluten-free diet though? OK, I made that last one up, just kidding! :)

Gfresh404 Enthusiast

I think the blocked post from yesterday has me suspicious.

Sorry Gfresh, didn't mean to call you a troll. :blink:

No offense taken

Does no one else see that article as overly alarmist?

We see plenty of highly-affected celiacs/NCGIs online but percentages have to be skewed by the more affected being online more, continuing the search for health.

I was amazed when I joined yahoo's bay area celiac group. Seemed out of ~30 ppl, only 2 or 3 still had any celiac-related problems at all.

It shouldn't be a news flash that scarred tissue doesn't always 100% heal.

Thinking not so much flattened villi as scalloping would/could be analogous to scarring, but I don't know enough biology to know. I know my own past gut pain felt more seriously physiological than flattened villi.

I do see as a bit over alarmist, but it also seems to bring up some good points - the main that for a large portion of gluten-free people, eliminating gluten alone is not enough. That probably seems pretty obvious for most of us here, but I'm guessing it's a different story for the general population.

I haven't even bothered to look at this article because there has already been enough alarmist stuff printed about Celiac without adding to it with another. I do agree with you Tom and if people have the expectation that they probably won't heal, then they probably won't.

I was in pretty bad shape at diagnosis with virtually no villi left yet, after 7 years, feel great. I also cannot tolerate much dairy either so I guess maybe I haven't healed healed 100%. Who cares? This is why God designed a back up plan for the small intestine. He gave us 22 feet, with overlap on the absorption front, so if a part of it were compromised, then another portion would take over. I think the numbers of those who don't heal to the point where they cannot function normally after giving time for healing, is pretty low. Maybe this is designed to keep people afraid and running to doctors all the time.....good for business. I have 3 other autoimmune problems besides Celiac so I'm not someone who only had symptoms for a week.

I suffered long term but once diagnosed, healed well enough over time that I live a completely normal life. I find that those who still consume gluten and eat like most Americans are always complaining about their medical problems and have many more problems than I do.

As you age, body parts are not always going to work perfectly. That's normal for everyone. I think if gluten free were not enough, there would be an epidemic of people who just would not heal. The incidence is small and is usually the result of other conditions that come with a delayed diagnosis of celiac or illnesses that co-exist with it, like Crohn's or colitis.

If God really had a plan he wouldn't of give us these bulls$#& disorders in the first place

dilettantesteph Collaborator

It was interesting for me to read about how so many people did better with supplementation. I did better when I removed all my supplements and vitamins. I think it was because I am sensitive to tiny amounts of cc. I did later add back vitamin D in the winter and iodine year around, very carefully sourced.

MJ-S Contributor

With all of the studies I've seen, they talk about people "following" or "not following" the gluten free diet. Have any studies taken into consideration how strictly a person adheres to a diet? Some people have a higher risk acceptance and continue to eat out at friends' houses and restaurants, live in shared kitchens, eat processed foods with high cc risk, etc. Others do not. Every time I see a study I wonder what if they're factoring how successful someone is at following the gluten free diet.

Skylark Collaborator

With all of the studies I've seen, they talk about people "following" or "not following" the gluten free diet. Have any studies taken into consideration how strictly a person adheres to a diet? Some people have a higher risk acceptance and continue to eat out at friends' houses and restaurants, live in shared kitchens, eat processed foods with high cc risk, etc. Others do not. Every time I see a study I wonder what if they're factoring how successful someone is at following the gluten free diet.

They ask, but people tend to lie in studies so you can never be sure.

Gemini Experienced
If God really had a plan he wouldn't of give us these bulls$#& disorders in the first place

God does have a plan.....maybe you don't see it? The world is not supposed to be perfect, otherwise, people would never learn from their mistakes.

Life is a learning process. I have never considered this a BS disorder because I have adapted well and live a normal life. Is it convenient? No, but that's the worst thing I can say I've encountered when learning to deal with Celiac Disease. I guess I have seen too much really serious illness in others to make me thankful that I was given something that I had such control over. And if you think that I wasn't that sick from Celiac, I can assure you that I was deathly ill at diagnosis. I am also mostly lactose intolerant so it's not just gluten I have to avoid. However, I've found the balance that keeps me from having a chip on my shoulder about it. There is life after a Celiac diagnosis.

Skylark Collaborator

If God really had a plan he wouldn't of give us these bulls$#& disorders in the first place

He did have a plan. Unfortunately Satan messed it up by tempting Eve and it's been downhill ever since. :lol:

Gfresh404 Enthusiast

God does have a plan.....maybe you don't see it? The world is not supposed to be perfect, otherwise, people would never learn from their mistakes.

Life is a learning process. I have never considered this a BS disorder because I have adapted well and live a normal life. Is it convenient? No, but that's the worst thing I can say I've encountered when learning to deal with Celiac Disease. I guess I have seen too much really serious illness in others to make me thankful that I was given something that I had such control over. And if you think that I wasn't that sick from Celiac, I can assure you that I was deathly ill at diagnosis. I am also mostly lactose intolerant so it's not just gluten I have to avoid. However, I've found the balance that keeps me from having a chip on my shoulder about it. There is life after a Celiac diagnosis.

Haha I love arguing with theists. Something good happens, thank God. Something bad happens, oh well it's all part of his plan.

He did have a plan. Unfortunately Satan messed it up by tempting Eve and it's been downhill ever since. :lol:

Haha I think you got that backwards. Read the Bible, God killed over 2 million - the Devil killed 10

mushroom Proficient

If God really had a plan he wouldn't of give us these bulls$#& disorders in the first place

He did have a plan. Unfortunately Satan messed it up by tempting Eve and it's been downhill ever since. :lol:

At least he didn't tempt her with pizza :rolleyes:

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      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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