New studies

[LP023]

I came across several studies today that said a gluten free diet may not be the best option for someone with celiacs who are asymptomatic. I’m not sensitive to eating gluten. I have been gluten free for over a month now. The studies say that those who are asymptomatic and do not have severe damage may be doing more harm than good by going gluten free because those who go completely gluten free become more sensitive over time when they consume tiny amounts or are cross contaminated. After being gluten free, a tiny amount of gluten actually causes more damage than consuming small amounts each day. I have also been told over and over that a crumb of bread does as much damage as a whole piece. There are several studies that do not support this. Since learning I have celiacs (family history) I tried to learn as much as possible and the celiac community seems to be doom and gloom. I’ve asked several questions on several platforms about cross contamination of pots and pans and kitchen safety. I do realize people have different levels of sensitivity (gets worse after going gluten free) but the one size fits all advice doesn’t seem to be accurate. I reached out to experts and GIs and was told that sharing pots and pans are safe as long as washed and that I can have a mixed kitchen. Just use common sense. Wash hand and wipe things down. Don’t share a toaster. I truly wonder if the advice given is doing more harm than good to a lot of us. The stress over the extreme measures we are told to follow is killing us faster than gluten. Google is an enemy. It brings up one story after another of the risks of cancer and other diseases but you truly look at the statistics it’s not much higher than someone without celiacs and one study says one things and another says something totally different. If one says celiacs are 10 times higher to develop cancer you will find 30 more that has a different number. Thoughts? 

[Scott Adams]

I've never heard this theory before, and you've referred to a "study" or article on this, yet you have not posted a link to it. Can you share this article with us?

[DawnFL]

I recently read much the same, but I'm still new to all of this & have read so very much, recently, that I'm not certain where I saw it.

[Wheatwacked]

Similar to saying alcoholics should not stop drinking because the delerium tremors caused by stopping is more damaging. Gluten has a opiod effect that essentially numbs us to its deleterious effects. It also depends on what symptoms are excluded as being a symptom of Celiac Disease. I was able to drink excessively for 30 years until the week I started GFD. Until then I had no problem waking up taking a slug of vodka and throwing up every morning. It took only a few days of being gluten free to free me from the addiction.  Suddenly drinking did not make things better. Similarly my whole life my sinuses were congested, I could never breath through the nose. Within a short time my sleep apnea got better and I found my nose was working. Diagnosed at 21 with prostate hypertrophy and at 63, after a few months of GFD my prostate shrank and I no longer required the prostate formula. There are upwards of 200 symptoms that have shown improvement through GFD alone, most of them pooh-poohed by mainstream healthcare as being caused by Celiac. Our Western diet depends on mandated fortification of wheat flour to raise certain nutrient levels; without it wheat flour is nothing more than a high omega 6:3 (22:1) source of carbohydrates. Wheat is added to so many processed foods that when you start GFD you lose those nutrients so that a gluten free Western Diet facsimile is less healthy.

What Are the Symptoms of Celiac Disease?

 

 

[trents]

On 2/24/2023 at 6:41 PM, LP023 said:

I came across several studies today that said a gluten free diet may not be the best option for someone with celiacs who are asymptomatic. I’m not sensitive to eating gluten. I have been gluten free for over a month now. The studies say that those who are asymptomatic and do not have severe damage may be doing more harm than good by going gluten free because those who go completely gluten free become more sensitive over time when they consume tiny amounts or are cross contaminated. After being gluten free, a tiny amount of gluten actually causes more damage than consuming small amounts each day. I have also been told over and over that a crumb of bread does as much damage as a whole piece. There are several studies that do not support this. Since learning I have celiacs (family history) I tried to learn as much as possible and the celiac community seems to be doom and gloom. I’ve asked several questions on several platforms about cross contamination of pots and pans and kitchen safety. I do realize people have different levels of sensitivity (gets worse after going gluten free) but the one size fits all advice doesn’t seem to be accurate. I reached out to experts and GIs and was told that sharing pots and pans are safe as long as washed and that I can have a mixed kitchen. Just use common sense. Wash hand and wipe things down. Don’t share a toaster. I truly wonder if the advice given is doing more harm than good to a lot of us. The stress over the extreme measures we are told to follow is killing us faster than gluten. Google is an enemy. It brings up one story after another of the risks of cancer and other diseases but you truly look at the statistics it’s not much higher than someone without celiacs and one study says one things and another says something totally different. If one says celiacs are 10 times higher to develop cancer you will find 30 more that has a different number. Thoughts? 

The problem with this theory is that it does not acknowledge that damage to various body systems can be going on even when there seem to be no classic symptoms. I was one of those. Gluten was causing me elevated liver enzymes for 13 years before I got my celiac diagnosis and by that time my villi were severely worn down and I had a lot of bone density loss and was beginning to drop into iron deficiency anemia. But I had little or no GI distress. I'm not a particularly sensitive celiac so I don't go to extremes to avoid CC. And I was diagnosed over 20 years ago. Now ,gluten-free eating is just the new norm and I don't stress out over it.

[Scott Adams]

I agree, and I've not seen any scientific support for anyone with celiac disease, even those who are asymptomatic, to continue eating gluten. This article may be helpful:

 

[Russ H]

I have not seen any research to justify such a position. Epitope creep suggests that the worst thing you can do is to continually expose the immune system to gluten. I can understand that some people who have been diagnosed via screening and are completely asymptomatic might wish to ignore a gluten free diet but generally doing that is harmful.

[LP023]

On 2/28/2023 at 7:00 PM, Russ H said:

I have not seen any research to justify such a position. Epitope creep suggests that the worst thing you can do is to continually expose the immune system to gluten. I can understand that some people who have been diagnosed via screening and are completely asymptomatic might wish to ignore a gluten free diet but generally doing that is harmful.

Many people have it their whole lives with mild symptoms and aren’t diagnosed until 60s or later. All of the studies I’ve read say the number of people undiagnosed is astronomical. Many people are diagnosed at an early age never diet and are in there 50s and 60s and healthy. I just don’t think we know enough about this disease. The contradictions in medical journals and online is unreal especially regarding  cross contamination. One thing I’ve really been perplexed by is people say only a crumb will cause severe harm and months to heal in the intestines. But when someone has to take the gluten challenge they have to eat gluten for 6 or more (depending on who you ask or what article you read) weeks to get an accurate diagnosis. 

[KennaH]

I have had symptoms my entire life beginning in high school. I was diagnosed by biopsy in Dec of 2022 and I just turned 64. I was hospitalized twice in October with no benefit. I pushed doctors until something new was tried and damage was visible. Lo and behold my life is beginning to change hopefully. Trying to convince my daughters to have gene test due to their stomach issues. If only celiac diagnosis was possible when they did testing in the 1970’s. 

[Wheatwacked]

28 minutes ago, LP023 said:

never diet and are in there 50s and 60s and healthy.

Is that why Americans spend the most on healthcare and are obese, on statins, BP meds, fertility problems, prostate and endometrial diseases, brain fog, various arthritises, osteoporosis, clogged arteries, thyroid and numerous other autoimmune diseases and are on CPAPs?  All things that have shown improvement on GFD. All considered to be simply part of getting older.  Mainstream medicine is in denial. Wheat is too important an economic commodity.

[knitty kitty]

58 minutes ago, LP023 said:

One thing I’ve really been perplexed by is people say only a crumb will cause severe harm and months to heal in the intestines. But when someone has to take the gluten challenge they have to eat gluten for 6 or more (depending on who you ask or what article you read) weeks to get an accurate diagnosis. 

While a person is eating gluten regularly, the body reaches a state of constant inflammation. 

If this person stops eating gluten, the inflammation calms down.  The immune system produces fewer and fewer antibodies against gluten and the body.

However, if this person starts eating gluten again as during a gluten challenge, the inflammation increases dramatically.  The immune system "remembers" gluten as dangerous.   The anti-gluten antibodies are produced very quickly and in high amounts.   Unfortunately, these anti-gluten antibodies are the same ones that mistakenly attack the body's tissues in the autoimmune reaction.  

Hope this helps!

[LP023]

42 minutes ago, Wheatwacked said:

Is that why Americans spend the most on healthcare and are obese, on statins, BP meds, fertility problems, prostate and endometrial diseases, brain fog, various arthritises, osteoporosis, clogged arteries, thyroid and numerous other autoimmune diseases and are on CPAPs?  All things that have shown improvement on GFD. All considered to be simply part of getting older.  Mainstream medicine is in denial. Wheat is too important an economic commodity.

A lot of those things can be blamed on poor diets. Not gluten. I’m not saying a lot of people shouldn’t be on a gluten free diet but some people may be ok without it. I read another study where people who had been diagnosed by biopsy years before had an upper endoscopy and were fine because they had been on the gluten free diet for awhile. They were told to eat a normal diet for 2 weeks and then they went back in with a scope and saw NO damage. Those people also had no symptoms during this time. I’m sure with time we learn more about how it effects different people. But for now it’s a one size fits all treatment for the most part. The foods we have to cut out do have benefits to our health so cutting them out completely would be a shame if it’s not needed for everyone.

[Wheatwacked]

1 minute ago, LP023 said:

They were told to eat a normal diet for 2 weeks

Not long enough for a gluten challange so of course no damage.

[LP023]

16 minutes ago, knitty kitty said:

While a person is eating gluten regularly, the body reaches a state of constant inflammation. 

If this person stops eating gluten, the inflammation calms down.  The immune system produces fewer and fewer antibodies against gluten and the body.

However, if this person starts eating gluten again as during a gluten challenge, the inflammation increases dramatically.  The immune system "remembers" gluten as dangerous.   The anti-gluten antibodies are produced very quickly and in high amounts.   Unfortunately, these anti-gluten antibodies are the same ones that mistakenly attack the body's tissues in the autoimmune reaction.  

Hope this helps!

I guess my question is if one crumb (having to be so careful with cross contamination) will cause damage to the villi why eat gluten for 6 weeks. If it takes 6 weeks to show damage for a scope then one crumb isn’t causing a lot of us the damage we were are told it will. 

[LP023]

2 minutes ago, Wheatwacked said:

Not long enough for a gluten challange so of course no damage.

But one crumb (cross contamination) will cause damage that takes months to heal is what we are told. One slip up is dangerous and going to cause damage is what I keep seeing in the celiac community. 

[knitty kitty]

@LP023,

It's not the amount of gluten eaten. 

It's the fact that any gluten will trigger the autoimmune response. 

The autoimmune response to gluten is what causes the damage.  The antibodies against gluten also attack the cells and tissues of the body.  The body is damaged in tissues and organs by anti-gluten antibodies.

It can take months to get the antibodies to go away, long after the gluten is removed from the diet.  

The body "remembers" gluten as dangerous.  Over time, the memory fades, but when exposed years later to gluten again, the autoimmune response will happen again, although it may take months to get to the same level of inflammation and autoimmune reaction as when first diagnosed, as in your example.  

 

[LP023]

2 minutes ago, knitty kitty said:

@LP023,

It's not the amount of gluten eaten. 

It's the fact that any gluten will trigger the autoimmune response. 

The autoimmune response to gluten is what causes the damage.  The antibodies against gluten also attack the cells and tissues of the body.  The body is damaged in tissues and organs by anti-gluten antibodies.

It can take months to get the antibodies to go away, long after the gluten is removed from the diet.  

The body "remembers" gluten as dangerous.  Over time, the memory fades, but when exposed years later to gluten again, the autoimmune response will happen again, although it may take months to get to the same level of inflammation and autoimmune reaction as when first diagnosed, as in your example.  

 

I’m just so tired of one study saying one thing and others saying different. I saw a lady on here say her husband laid his cutting board in the dishwasher with hers and she got glutened. One says we need separate dishes and another says it’s fine. I was diagnosed by TTG and was told to keep eating gluten until my biopsy. They scheduled the biopsy for 4 months later. If it’s that serious they wouldn’t wait 4 months and tell people to keep eating it for 4 months. This is the same experience so many people have. 

[Wheatwacked]

Some people go years, even with obvious symptoms, yet the diagnostic test show no evidence of celiac disease, have numerous procedures, like gall bladder surgergy, etc that work temporarily only to find 10 or more years later it was celiac disease all along

 

[knitty kitty]

Doctors tell you to continue eating gluten until they can see the damage for themselves in the endoscopy and biopsies.  

They must all be from Missouri.  

Some doctors will make a diagnosis of Celiac if the blood tests for antibodies are extremely high and if Celiac genes are present.  

[LP023]

16 minutes ago, knitty kitty said:

@LP023,

It's not the amount of gluten eaten. 

It's the fact that any gluten will trigger the autoimmune response. 

The autoimmune response to gluten is what causes the damage.  The antibodies against gluten also attack the cells and tissues of the body.  The body is damaged in tissues and organs by anti-gluten antibodies.

It can take months to get the antibodies to go away, long after the gluten is removed from the diet.  

The body "remembers" gluten as dangerous.  Over time, the memory fades, but when exposed years later to gluten again, the autoimmune response will happen again, although it may take months to get to the same level of inflammation and autoimmune reaction as when first diagnosed, as in your example.  

 

I don’t feel like we have enough studies done on any of this. I don’t see how it can be proven that one time of being cross contaminated can attack our cells and other organs. Scientist May believe this but may not be proven. Science changes over time and we learn things we didn’t know 20 years ago. For those of us who don’t have symptoms when glutened I truly believe more studies need to be done. The suicide rate is so much higher in people with celiacs after diagnosis because we feel like we can’t win. We are constantly on guard wondering if everything we put in our mouth is causing harm. Add in things that mimic gluten like potatoes and holy cow are we screwed.

 

2 minutes ago, knitty kitty said:

Doctors tell you to continue eating gluten until they can see the damage for themselves in the endoscopy and biopsies.  

They must all be from Missouri.  

Some doctors will make a diagnosis of Celiac if the blood tests for antibodies are extremely high and if Celiac genes are present.  

Arkansas

p

Just now, LP023 said:

I don’t feel like we have enough studies done on any of this. I don’t see how it can be proven that one time of being cross contaminated can attack our cells and other organs. Scientist May believe this but may not be proven. Science changes over time and we learn things we didn’t know 20 years ago. For those of us who don’t have symptoms when glutened I truly believe more studies need to be done. The suicide rate is so much higher in people with celiacs after diagnosis because we feel like we can’t win. We are constantly on guard wondering if everything we put in our mouth is causing harm. Add in things that mimic gluten like potatoes and holy cow are we screwed.

 

Arkansas

p

Arkansas. My TTG was 25. Week positive cutoff was 10 I believe.  No other test done. 

[knitty kitty]

https://www.niams.nih.gov/health-topics/autoimmune-diseases

[trents]

3 hours ago, LP023 said:

I’m just so tired of one study saying one thing and others saying different. I saw a lady on here say her husband laid his cutting board in the dishwasher with hers and she got glutened. One says we need separate dishes and another says it’s fine. I was diagnosed by TTG and was told to keep eating gluten until my biopsy. They scheduled the biopsy for 4 months later. If it’s that serious they wouldn’t wait 4 months and tell people to keep eating it for 4 months. This is the same experience so many people have. 

Different celiacs have different sensitivity levels to minor amounts of gluten exposure. What is enough to trigger a reaction in one celiac will not trigger one in another. The FDA has established the guideline of 20ppm for food companies to be able to market their products as gluten free. Their research concluded that this was a safe concentration for the majority of celiacs. However, we have reports from many on this forum who react to concentrations much lower than that.

The other factor which may be helpful to you in understanding whey the information from different sources is so variable is that many celiacs are "silent" celiacs. That is, they do not experience classic GI symptoms when consuming gluten. They are often diagnosed based on other, non GI issues such as anemia, fatigue, elevated liver enzymes, brain fog, dermatitis herpetiforms (DH), ataxia, etc. My point being that the absence of an upset tummy may not be a good indicator that eating a small amount of gluten or even a large amount occasionally is OK.

The other thing I would make mention of is that the medical community as a whole is rather behind the knowledge curve when it comes to gluten disorders. Some of the stuff you are saying in this thread does not sound like it comes from those who are really current in their knowledge base of gluten disorders. You personally may not need to worry about extreme sanitation measures but you would do well to take the gluten free lifestyle seriously rather than casually.

Edited March 11, 2023 by trents

[Wheatwacked]

On 2/24/2023 at 9:41 PM, LP023 said:

 one time of being cross contaminated can attack our cells and other organs. I have also been told over and over that a crumb of bread does as much damage as a whole piece.

They also say if you swallow a watermelon pit it will grow in your stomach.  Consider yourself lucky you aren't sensitized.  I suggest you follow GFD for a couple of months and reevaluate. Just do your best but take it one day at a time.

4 hours ago, KennaH said:

If only celiac diagnosis was possible when they did testing in the 1970’s. 

My son was diagnosed in 1976 as soon as he was weaned. There was only one pediactric gastro who was familiar with celiac disease and in a population of 6 million he only had 13 Celiac patients. Lucky my wife was a nurse and did not buy the Oh, he's just colicky. Mom said I got what I gave. This is a picture of a Biafra babe after they changed from rice flour to the new green revolution wheat. That was also the year Norman Borlaug got the Nobel Prize for the Green Revolution. They diagnosed as Kwasiorkor (protein deficiecy) but he doesn't have the stubby fingers and toes found in that disease.  It is exactly what my son looked like, except caucasian. I looked at him in his crib and remembered the newsphotos from then exclaimed "He looks like a Biafra baby."  It is also what I looked like 40 years later in 2014. 

[LP023]

11 hours ago, trents said:

Different celiacs have different sensitivity levels to minor amounts of gluten exposure. What is enough to trigger a reaction in one celiac will not trigger one in another. The FDA has established the guideline of 20ppm for food companies to be able to market their products as gluten free. Their research concluded that this was a safe concentration for the majority of celiacs. However, we have reports from many on this forum who react to concentrations much lower than that.

The other factor which may be helpful to you in understanding whey the information from different sources is so variable is that many celiacs are "silent" celiacs. That is, they do not experience classic GI symptoms when consuming gluten. They are often diagnosed based on other, non GI issues such as anemia, fatigue, elevated liver enzymes, brain fog, dermatitis herpetiforms (DH), ataxia, etc. My point being that the absence of an upset tummy may not be a good indicator that eating a small amount of gluten or even a large amount occasionally is OK.

The other thing I would make mention of is that the medical community as a whole is rather behind the knowledge curve when it comes to gluten disorders. Some of the stuff you are saying in this thread does not sound like it comes from those who are really current in their knowledge base of gluten disorders. You personally may not need to worry about extreme sanitation measures but you would do well to take the gluten free lifestyle seriously rather than casually.

So a cutting board laid on another in the dishwasher is enough to cause intestinal damage in one person but cause none in another person? That’s kind of what aggravates me. I’ve been told any amount will cause the same damage in everyone even if there are no symptoms. I do take it seriously and haven’t eaten it at all and am overly careful with cross contamination. I do have 3 kids and a husband and do not plan to convert my whole house to gluten free. It would be nice to get accurate information that is the same across all sources on the damage done by cross contamination.

[LP023]

11 hours ago, Wheatwacked said:

They also say if you swallow a watermelon pit it will grow in your stomach.  Consider yourself lucky you aren't sensitized.  I suggest you follow GFD for a couple of months and reevaluate. Just do your best but take it one day at a time.

My son was diagnosed in 1976 as soon as he was weaned. There was only one pediactric gastro who was familiar with celiac disease and in a population of 6 million he only had 13 Celiac patients. Lucky my wife was a nurse and did not buy the Oh, he's just colicky. Mom said I got what I gave. This is a picture of a Biafra babe after they changed from rice flour to the new green revolution wheat. That was also the year Norman Borlaug got the Nobel Prize for the Green Revolution. They diagnosed as Kwasiorkor (protein deficiecy) but he doesn't have the stubby fingers and toes found in that disease.  It is exactly what my son looked like, except caucasian. I looked at him in his crib and remembered the newsphotos from then exclaimed "He looks like a Biafra baby."  It is also what I looked like 40 years later in 2014. 

I’m not sensitive to it now. Im reading and being told the longer I go on a gluten free diet though the more sensitive I will become. I can eat a whole pizza now and not hurt. But from what I’m being told is after going gluten free a bread crumb eaten on accident can cause severe pain and sickness. I’ve gone gluten free and am overly caution of cross contamination. I’ve also read and heard that gluten causes damage even without symptoms. My question is those of us who don’t have symptoms may not have the level of damage in our intestines that someone would have if they have bad symptoms. Maybe the level of sensitivity correlates with the amount of damage and someone who doesn’t hurt from gluten may not have the same internal response as someone who does hurt. Those of us who aren’t sensitive to it could probably relax on cross contamination if we could figure out if the damage to our insides doesn’t happen from cross contamination.