Healing and Cheating??

[Ginger38]

So I am curious, how long does it take after going gluten-free for your body to heal?
I feel this next one is a stupid question, please don't be judgmental about it, I am just trying to figure all this out, but how bad is it if you "cheat" occasionally in small amounts? How much does this affect your body healing and what does cheating occasionally actually do? 

[knitty kitty]

@Ginger38, 

The villi in our digestive tract can start growing back in as little as two weeks, but the damage to the underlying tissues can take much much longer to heal.  Even after many years on the gluten free diet, microscopic damage in the underlying tissues can still be seen.  

About cheating, we've all fallen short....But...every time we cheat, we start the inflammatory response all over again.  

(Sorry for the science-y explanation...)

There are T-cells (antibodies) that roam the body looking for the dangerous invader gluten.  When found, the T-cells launch an attack on gluten and recruit more T-cells to help fight the gluten.  These T-cells accidentally attack other cells in our bodies (thyroid, pancreas, brain, etc., etc.) 

So, every time we cheat, the cells that make the T-cells produce more T-cells, and proliferate themselves, so more cells end up making T-cells.  Subsequent cheats or slip-ups can provoke a more intense T-cell attacks because there's more cells producing T-cells.  

The cells that produce these T-cells that target gluten can live up to two years!  

So cheating just a little keeps this inflammation going on and our body's organs can get more and more damaged.  

By the time you're my age (I'm as old as a rock and diagnosed late in life), you can end up with permanent damage.  I have had vitamin and mineral deficiencies, osteoporosis, anemia, type two diabetes, gall bladder removal, and thyroid problems.  And the list could go on... 

Of course, we've had some people who have gone gluten free for two years or longer who found they could eat gluten again, seemingly without a reaction.   Those T-cell producing cells have died by this time....But, there's new T-cell producing cells in our genetically driven immune system that will eventually recognize gluten again and mount increasingly severe T-cell attacks and damage will start all over again.  

My goal when I started on the gluten free diet was to get to the end of a two year mark without any accidental or purposeful glutening.  If I got to the two year mark, I'd take a risk and eat out at my favorite steak house and buy myself a special thing I'd always wanted.  If I cheated or accidentally got glutened, I'd have to start the two year countdown all over again.  By the end of two years without a slip, I felt so much better, I decided a home cooked steak was better and just bought my special thing instead.  Having that goal helped me refrain from cheating.  You can't buy health!  

Hope this helps! 

Kitty

 

Edited October 16, 2021 by knitty kitty
Typo

[Oldturdle]

2 hours ago, knitty kitty said:

@Ginger38, 

The villi in our digestive tract can start growing back in as little as two weeks, but the damage to the underlying tissues can take much much longer to heal.  Even after many years on the gluten free diet, microscopic damage in the underlying tissues can still be seen.  

About cheating, we've all fallen short....But...every time we cheat, we start the inflammatory response all over again.  

(Sorry for the science-y explanation...)

There are T-cells (antibodies) that roam the body looking for the dangerous invader gluten.  When found, the T-cells launch an attack on gluten and recruit more T-cells to help fight the gluten.  These T-cells accidentally attack other cells in our bodies (thyroid, pancreas, brain, etc., etc.) 

So, every time we cheat, the cells that make the T-cells produce more T-cells, and proliferate themselves, so more cells end up making T-cells.  Subsequent cheats or slip-ups can provoke a more intense T-cell attacks because there's more cells producing T-cells.  

The cells that produce these T-cells that target gluten can live up to two years!  

So cheating just a little keeps this inflammation going on and our body's organs can get more and more damaged.  

By the time you're my age (I'm as old as a rock and diagnosed late in life), you can end up with permanent damage.  I have had vitamin and mineral deficiencies, osteoporosis, anemia, type two diabetes, gall bladder removal, and thyroid problems.  And the list could go on... 

Of course, we've had some people who have gone gluten free for two years or longer who found they could eat gluten again, seemingly without a reaction.   Those T-cell producing cells have died by this time....But, there's new T-cell producing cells in our genetically driven immune system that will eventually recognize gluten again and mount increasingly severe T-cell attacks and damage will start all over again.  

My goal when I started on the gluten free diet was to get to the end of a two year mark without any accidental or purposeful glutening.  If I got to the two year mark, I'd take a risk and eat out at my favorite steak house and buy myself a special thing I'd always wanted.  If I cheated or accidentally got glutened, I'd have to start the two year countdown all over again.  By the end of two years without a slip, I felt so much better, I decided a home cooked steak was better and just bought my special thing instead.  Having that goal helped me refrain from cheating.  You can't buy health!  

Hope this helps! 

Kitty

 

Thanks Kitty.  Extremely helpful!  I have heard that some celiacs, who have been on a gluten free diet, get more and more sensitive to gluten as time goes on.  They say their symptoms of being "glutened" become worse and worse, with less gluten required to trigger the symptoms.  Do you know anything about this?

[knitty kitty]

5 hours ago, Oldturdle said:

Thanks Kitty.  Extremely helpful!  I have heard that some celiacs, who have been on a gluten free diet, get more and more sensitive to gluten as time goes on.  They say their symptoms of being "glutened" become worse and worse, with less gluten required to trigger the symptoms.  Do you know anything about this?

 

Celiac people who become more and more sensitive and their symptoms become worse with less gluten required to trigger symptoms may be well before that two year gluten free mark.  

This frequently occurs when patients trying to get a diagnosis go gluten free before all their diagnostic tests are completed.  They have to resume consuming gluten in order to complete their diagnostic tests.  While off gluten for a short period of time, the T-cells are still being produced and are floating around looking for something to attack.  With the reintroduction of gluten, the many T-cells (antibodies) laying in wait are given the signal to attack.  Because there are so many of them, the likelihood that they will also mistakenly attack lookalike body cells goes up, resulting in an extreme reaction.  

As part of the attack, lots of histamine is released by another type of immune system cells called mast cells.  (Easily triggered mast cells can lead to "mast cell activation syndrome.") 

Histamine breaks down the gluten particles and other foreign invaders (like during the flu or a cold, or with pollen during the Spring).  Histamine causes swelling, fluid retention, itchy eyes, runny noses, etc., similarly seen in allergic reactions.  High histamine makes us feel horrible.  Histamine causes inflammation which can damage some of our body cells.  In the digestive tract, high histamine levels can make normal cells want to move away from other cells being attacked, resulting in "leaky gut" syndrome.  This in turn allows big gluten molecules out of the digestive system and into the blood stream.  Once in the blood stream, those gluten particles can go to organs and locations where more T-cells attack them, trigger more histamine release and cause collateral damage to healthy cells.  We end up with joint inflammation, heart and lung problems, pancreatic problems, gall bladder problems, etc.  High histamine levels in the brain can add to that "foggy" feeling.  

Some foods contain high histamine levels naturally (citrus fruits, bananas, shellfish, nuts and peanuts, nightshades, smoked meats, processed and canned foods, some gluten free grains,  etc.), so a low histamine diet is recommended so those mast cells don't get triggered.  Fresh meat and veggies have lower levels of histamine, thus we recommend the AutoImmune Protocol diet or the less strict Fodmap diet.  Staying hydrated is important, too, but no high histamine drinks like coffee, black tea and soda pop.  Caffeine consumption can cause more histamine release. 

This cascade of the immune system is why we strongly encourage cooking and eating at home following a low histamine diet as mentioned above.  

I followed the AutoImmune Protocol diet and after a month or two, I added back a new food once a week or two weeks.  If no reaction, another food was tested.  If I had any symptoms, I would remove the offending food (or combination of foods) and wait until my symptoms calmed down, and try again with a different food.  This diet is not meant to be permanent.  It is meant to help calm down the inflammation process and identify problematic foods which may be retested later.  The important thing is to eat nutritious foods, because as Celiacs with inherent malabsorption, we need all the vitamins and minerals we can get!  

Kitty

[Oldturdle]

Kitty, wow!  You know your stuff!  Another member on this sight, Debj14, was referred to a board certified nutritionist, who did lab tests to determine which foods she was not tolerating.  She avoided these food, and  claims she has felt well, without any illness, for ten years.  It would be interesting to know which of the foods she was advised not to eat, are also on your list.  

     Thank you so much for your in depth explanation on the pathology of celiacs disease.  I am assuming you have a scientific background.

[knitty kitty]

@Oldturdle,

Thank you. 

Yes, I have a degree in microbiology.  I've studied extensively vitamins and nutrition as well.  

[Ginger38]

On 10/16/2021 at 1:07 PM, knitty kitty said:

@Ginger38, 

The villi in our digestive tract can start growing back in as little as two weeks, but the damage to the underlying tissues can take much much longer to heal.  Even after many years on the gluten free diet, microscopic damage in the underlying tissues can still be seen.  

About cheating, we've all fallen short....But...every time we cheat, we start the inflammatory response all over again.  

(Sorry for the science-y explanation...)

There are T-cells (antibodies) that roam the body looking for the dangerous invader gluten.  When found, the T-cells launch an attack on gluten and recruit more T-cells to help fight the gluten.  These T-cells accidentally attack other cells in our bodies (thyroid, pancreas, brain, etc., etc.) 

So, every time we cheat, the cells that make the T-cells produce more T-cells, and proliferate themselves, so more cells end up making T-cells.  Subsequent cheats or slip-ups can provoke a more intense T-cell attacks because there's more cells producing T-cells.  

The cells that produce these T-cells that target gluten can live up to two years!  

So cheating just a little keeps this inflammation going on and our body's organs can get more and more damaged.  

By the time you're my age (I'm as old as a rock and diagnosed late in life), you can end up with permanent damage.  I have had vitamin and mineral deficiencies, osteoporosis, anemia, type two diabetes, gall bladder removal, and thyroid problems.  And the list could go on... 

Of course, we've had some people who have gone gluten free for two years or longer who found they could eat gluten again, seemingly without a reaction.   Those T-cell producing cells have died by this time....But, there's new T-cell producing cells in our genetically driven immune system that will eventually recognize gluten again and mount increasingly severe T-cell attacks and damage will start all over again.  

My goal when I started on the gluten free diet was to get to the end of a two year mark without any accidental or purposeful glutening.  If I got to the two year mark, I'd take a risk and eat out at my favorite steak house and buy myself a special thing I'd always wanted.  If I cheated or accidentally got glutened, I'd have to start the two year countdown all over again.  By the end of two years without a slip, I felt so much better, I decided a home cooked steak was better and just bought my special thing instead.  Having that goal helped me refrain from cheating.  You can't buy health!  

Hope this helps! 

Kitty

 

Thank you for this!! It was very informative and makes more sense now. You mentioned diabetes and gallbladder ... Are those connected to celiac? After I had my daughter I started developing lots of issues. No one could ever figure out what was wrong with me. I got tired of going to doctors. But in that time I was diagnosed with a thyroid issue and prediabetes... Also I had my gallbladder out. I also had bladder issues, chronic fatigue and a bunch of other stuff including mental health issues. I was sent for a sleep study ... I dont get good quality sleep yet they don't know why. I dealt with GI issues as well. I have always had terrible tooth enamel as well, I'm a big ole mess 🤷

[icelandgirl]

1 hour ago, Ginger38 said:

Thank you for this!! It was very informative and makes more sense now. You mentioned diabetes and gallbladder ... Are those connected to celiac? After I had my daughter I started developing lots of issues. No one could ever figure out what was wrong with me. I got tired of going to doctors. But in that time I was diagnosed with a thyroid issue and prediabetes... Also I had my gallbladder out. I also had bladder issues, chronic fatigue and a bunch of other stuff including mental health issues. I was sent for a sleep study ... I dont get good quality sleep yet they don't know why. I dealt with GI issues as well. I have always had terrible tooth enamel as well, I'm a big ole mess 🤷

Hi Ginger!

I also started having troubles after having my daughter which led to my celiac diagnosis, Hashimoto's diagnosis and having my gallbladder removed.  I have also felt like a big ole mess so I feel you!  I believe that pregnancy and childbirth and all that comes along with it can trigger autoimmune diseases to become active in those that have a gene for it.  At least that's what I've read and my Dr. seems to agree with.

The thing that helps the most in keeping things in check for me is following a strict gluten free diet and really trying to take care of myself.  I also try to keep stress to a minimum as much as possible (this can be hard) because I know that it can trigger my autoimmune issues.

How long it takes to heal seems to in part depend on how much damage there is to the individual and how well you follow a gluten free diet.  It took a year and a half for my antibodies to get to a normal level, even though I was really strict.  As time has gone on I see that other things have improved as well.  My energy level is better, I get less frequent headaches, my dental health has improved (crazy, right?)...that in addition to the fact that my gastro issues are so much improved from before diagnosis.  But, it really did take some time for me.  Maybe the thyroid issues complicated things and having my gallbladder removed a month after my celiac diagnosis was not ideal, but I really do feel so much better now than I did at diagnosis (it will be  years in January).

All that to say, you're not alone in having a variety of things going on that can make you feel like you are falling apart.  Keep sticking to your gluten free diet and taking good care of yourself and you will feel better and will heal!

Hugs!

[knitty kitty]

@Ginger38 and @icelandgirl,

There is evidence that a deficiency of Thiamine (Vitamin B1) can be part of the triggering mechanism of Celiac Disease.  

Celiac Disease presenting after an illness, pregnancy, or traumatic experience is known.  These are also the same things known to use up lots of thiamine.  If a person is low on thiamine to begin with, these extra stressors can deplete the body's stores of thiamine, resulting in a thiamine deficiency.  

When thiamine deficiency occurs, the gene for thiamine transporters get switched off.  Thiamine transporters are like doormen on the surface of every cell in your body.  These doormen grab thiamine out of the blood stream and escort thiamine into the cells.   When there's no thiamine, the doormen fall asleep.  The thiamine transporter gene being switched off is like the doormen all falling asleep.  

The thiamine transporter gene is on the same area of the chromosome that code for other autoimmune diseases (HLA).  Once the thiamine transporter gene switches off, the autoimmune disease genes start switching on.  Depending on each person's genome, different autoimmune diseases start.  

The fastest and best way to get the transporter genes to switch back on is to flood the system with thiamine (sort of like storming a castle).  High doses of thiamine involves taking 500 mg or more of thiamine.  Improvement is frequently seen within minutes to hours.  Thiamine can be given through an IV or with over the counter supplements.  Thiamine HCl, Allithiamine, and Benfotiamine are various forms of thiamine that will help.  

Starting with lower doses and increasing the dose gradually and taking smaller dose every two to three hours is better than taking a big dose all at once.  

Reading list...

"Diabetes and Thiamine: A Novel Treatment Opportunity"

https://www.hormonesmatter.com/diabetes-thiamine-treatment-opportunity/

And...

"The Missing Link to Thyroid Fatigue"

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

And...

"Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease"

https://pubmed.ncbi.nlm.nih.gov/33210299/

And...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

And my research links and personal experience with thiamine deficiency due to malabsorption caused by Celiac Disease...

 

[knitty kitty]

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

[Ginger38]

10 hours ago, knitty kitty said:

@Ginger38 and @icelandgirl,

There is evidence that a deficiency of Thiamine (Vitamin B1) can be part of the triggering mechanism of Celiac Disease.  

Celiac Disease presenting after an illness, pregnancy, or traumatic experience is known.  These are also the same things known to use up lots of thiamine.  If a person is low on thiamine to begin with, these extra stressors can deplete the body's stores of thiamine, resulting in a thiamine deficiency.  

When thiamine deficiency occurs, the gene for thiamine transporters get switched off.  Thiamine transporters are like doormen on the surface of every cell in your body.  These doormen grab thiamine out of the blood stream and escort thiamine into the cells.   When there's no thiamine, the doormen fall asleep.  The thiamine transporter gene being switched off is like the doormen all falling asleep.  

The thiamine transporter gene is on the same area of the chromosome that code for other autoimmune diseases (HLA).  Once the thiamine transporter gene switches off, the autoimmune disease genes start switching on.  Depending on each person's genome, different autoimmune diseases start.  

The fastest and best way to get the transporter genes to switch back on is to flood the system with thiamine (sort of like storming a castle).  High doses of thiamine involves taking 500 mg or more of thiamine.  Improvement is frequently seen within minutes to hours.  Thiamine can be given through an IV or with over the counter supplements.  Thiamine HCl, Allithiamine, and Benfotiamine are various forms of thiamine that will help.  

Starting with lower doses and increasing the dose gradually and taking smaller dose every two to three hours is better than taking a big dose all at once.  

Reading list...

"Diabetes and Thiamine: A Novel Treatment Opportunity"

https://www.hormonesmatter.com/diabetes-thiamine-treatment-opportunity/

And...

"The Missing Link to Thyroid Fatigue"

https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/

And...

"Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease"

https://pubmed.ncbi.nlm.nih.gov/33210299/

And...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

And my research links and personal experience with thiamine deficiency due to malabsorption caused by Celiac Disease...

 

Thank you for these very in depth explanations, they are very helpful. You seem very intelligent!! thank you for sharing your knowledge 😊

[Ginger38]

11 hours ago, icelandgirl said:

Hi Ginger!

I also started having troubles after having my daughter which led to my celiac diagnosis, Hashimoto's diagnosis and having my gallbladder removed.  I have also felt like a big ole mess so I feel you!  I believe that pregnancy and childbirth and all that comes along with it can trigger autoimmune diseases to become active in those that have a gene for it.  At least that's what I've read and my Dr. seems to agree with.

The thing that helps the most in keeping things in check for me is following a strict gluten free diet and really trying to take care of myself.  I also try to keep stress to a minimum as much as possible (this can be hard) because I know that it can trigger my autoimmune issues.

How long it takes to heal seems to in part depend on how much damage there is to the individual and how well you follow a gluten free diet.  It took a year and a half for my antibodies to get to a normal level, even though I was really strict.  As time has gone on I see that other things have improved as well.  My energy level is better, I get less frequent headaches, my dental health has improved (crazy, right?)...that in addition to the fact that my gastro issues are so much improved from before diagnosis.  But, it really did take some time for me.  Maybe the thyroid issues complicated things and having my gallbladder removed a month after my celiac diagnosis was not ideal, but I really do feel so much better now than I did at diagnosis (it will be  years in January).

All that to say, you're not alone in having a variety of things going on that can make you feel like you are falling apart.  Keep sticking to your gluten free diet and taking good care of yourself and you will feel better and will heal!

Hugs!

Thank you!! I had a c section and a large baby... I was also in an abusive marriage for many years... Living in constant fight or flight hasn't helped. I still have a lot of stress being a single mom to a special needs kid... So I'm not sure how to help with all that