how low is 20 parts per million (ppm) of gluten ???

[DJFL77I]

thats what guten free packaged foods need to be...

is that enough gluten for the body to even notice it?

[Sharona]

On 9/8/2020 at 6:43 AM, DJFL77I said:

thats what guten free packaged foods need to be...

is that enough gluten for the body to even notice it?

I notice and it depends on how sensitive you are. I get muscle aches with mild gluten intake. Sometimes a headache. I would recommend trying your best not to ingest any gluten. It does have a damaging effect on you even though you do not feel any consequence.

[Scott Adams]

Under 20 ppm is an extremely tiny amount that experts have concluded is the safety threshold for those with celiac disease. A small percentage of super sensitive celiacs and those with DH claim to still react to such small levels, but this has never been, as far as I know, verified scientifically. Celiacs have been shown to heal on diets containing under 200 ppm, which was the prior Codex Alimentarius standard in Europe before the USA even had a gluten-free labelling law. 

It is 0.00002% of the food, and just imagine 1 million black marbles with 20 white ones mixed into them.

If you are interested in some older studies done on celiacs eating 200 ppm:

https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/ 

[gfjennie]

16 hours ago, Sharona said:

I notice and it depends on how sensitive you are. I get muscle aches with mild gluten intake. Sometimes a headache. I would recommend trying your best not to ingest any gluten. It does have a damaging effect on you even though you do not feel any consequence.

Hi Sharona,

my son gets muscle aches as well, though his doctors have said this is not a common side effect of celiac..... have you had confirmation that this is from celiac?bhis debilitating soreness has cleared up since he was diagnosed and went gluten free about 2 years ago, but when his stomach distress does flair up, so do his aches and pains. I don't know what else could be causing this or what else we should be checking for outside of gluten.

[Sharona]

6 hours ago, gfjennie said:

Hi Sharona,

my son gets muscle aches as well, though his doctors have said this is not a common side effect of celiac..... have you had confirmation that this is from celiac?bhis debilitating soreness has cleared up since he was diagnosed and went gluten free about 2 years ago, but when his stomach distress does flair up, so do his aches and pains. I don't know what else could be causing this or what else we should be checking for outside of gluten.

I have not had it confirmed but I know when I have eaten gluten and I do get muscle aches especially in my shoulders.  It takes a few days for the symptoms to disappear. Sometimes my bowels will be upset and sometimes it will to much of gluten to even digest and I will be throwing up a couple of hours later. I still end up with muscle aches after. I have to try to be very careful. I am sure your son has the same in a varying degree. You have to realize it is a poison to your system. Your immune system reaction and it affects my weak spot my shoulders. I have been diagnosed almost 30 years so it never goes away. I am not sure how old your son is but tell him it never pays to cheat and try something as you will feel the affects.

[Sharona]

7 hours ago, Scott Adams said:

Under 20 ppm is an extremely tiny amount that experts have concluded is the safety threshold for those with celiac disease. A small percentage of super sensitive celiacs and those with DH claim to still react to such small levels, but this has never been, as far as I know, verified scientifically. Celiacs have been shown to heal on diets containing under 200 ppm, which was the prior Codex Alimentarius standard in Europe before the USA even had a gluten-free labelling law. 

It is 0.00002% of the food, and just imagine 1 million black marbles with 20 white ones mixed into them.

If you are interested in some older studies done on celiacs eating 200 ppm:

https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/ 

Thanks for the explanation. My body feels like it would be getting all the white ones. lol

[gfjennie]

3 minutes ago, Sharona said:

I have not had it confirmed but I know when I have eaten gluten and I do get muscle aches especially in my shoulders.  It takes a few days for the symptoms to disappear. Sometimes my bowels will be upset and sometimes it will to much of gluten to even digest and I will be throwing up a couple of hours later. I still end up with muscle aches after. I have to try to be very careful. I am sure your son has the same in a varying degree. You have to realize it is a poison to your system. Your immune system reaction and it affects my weak spot my shoulders. I have been diagnosed almost 30 years so it never goes away. I am not sure how old your son is but tell him it never pays to cheat and try something as you will feel the affects.

thank you... yes, the pain pretty much ensures he does not cheat. It had been rather debilitating prior to the diagnosis.

[Sharona]

2 minutes ago, gfjennie said:

thank you... yes, the pain pretty much ensures he does not cheat. It had been rather debilitating prior to the diagnosis.

How long ago was diagnosis? Glad it is better for him. 

I had to eliminate dairy in the first two years till my small intestine healed. Now I am okay. 

[gfjennie]

a little over a year and a half (TTG down from somewhere north of 100 to 20)...

when he has stomach problems he doesn't eat dairy, but otherwise he does it and it seems to be fine... and the doctors have said it is fine for him to eat, but I do worry that it is inflammatory, so we work to reduce dairy and eat lots of veg, but at the same time he is also now growing pretty fast and extremely hungry, and at times dairy can help a lot just filling him up if he needs a 2nd or 3rd dinner or a snack on the road.

for some reason eliminating dairy doesn't seem to be the main recommendation anymore, but I'm not sure why it has changed - my niece also has celiac, diagnosed over a decade ago, and she was off dairy for 2 years as well

[gfjennie]

1 minute ago, gfjennie said:

a little over a year and a half (TTG down from somewhere north of 100 to 20)...

when he has stomach problems he doesn't eat dairy, but otherwise he does it and it seems to be fine... and the doctors have said it is fine for him to eat, but I do worry that it is inflammatory, so we work to reduce dairy and eat lots of veg, but at the same time he is also now growing pretty fast and extremely hungry, and at times dairy can help a lot just filling him up if he needs a 2nd or 3rd dinner or a snack on the road.

for some reason eliminating dairy doesn't seem to be the main recommendation anymore, but I'm not sure why it has changed - my niece also has celiac, diagnosed over a decade ago, and she was off dairy for 2 years as well

incidentally is your shoulder pain in joints or muscles?

his used to be both, but felt it overwhelmingly in his leg muscles (he went from being a bit of a soccer player to barely being able to walk most mornings and also at the end of a school day). now he mostly has joint pain in his knees, and sometimes some muscle pain, but more often "deadness" where they just feel like it is hard to walk because they are fatigued, as though he worked out really hard even though he didn't

[Sharona]

2 minutes ago, gfjennie said:

incidentally is your shoulder pain in joints or muscles?

his used to be both, but felt it overwhelmingly in his leg muscles (he went from being a bit of a soccer player to barely being able to walk most mornings and also at the end of a school day). now he mostly has joint pain in his knees, and sometimes some muscle pain, but more often "deadness" where they just feel like it is hard to walk because they are fatigued, as though he worked out really hard even though he didn't

In my shoulders I get muscle weakness and when I am typing on the computer my arms feel weak so I guess a bit of both the muscle weakness and fatigued with the gluten. 

What you should try is good fats to keep him full longer.  You could use nuts like almonds, walnuts and mixed nuts baking as ingredients with oils. I use oils like avocado and coconut and grapeseed oils to bake or fry. With salads I use olive oil. You can try to incorporate more of this in his diet to give him more energy. 

[gfjennie]

1 hour ago, Sharona said:

In my shoulders I get muscle weakness and when I am typing on the computer my arms feel weak so I guess a bit of both the muscle weakness and fatigued with the gluten. 

What you should try is good fats to keep him full longer.  You could use nuts like almonds, walnuts and mixed nuts baking as ingredients with oils. I use oils like avocado and coconut and grapeseed oils to bake or fry. With salads I use olive oil. You can try to incorporate more of this in his diet to give him more energy. 

good ideas! luckily he loves a vegan pesto we developed (with pistachios) and he likes things with almond flour and coconut milk or oil, loves avocados and eats tons of them, and I have been adding more olive oil to his stuff as well.... I think it probably is important to focus more on plant based solutions, so thanks for the suggestions and encouragement!! He likes peanuts too, but they seem like they can be hard on a tum if we eat too many...I think they just might be a little harder to digest.

[marc9803]

Just now, Sharona said:

Thanks for the explanation. My body feels like it would be getting all the white ones. lol

I wouldn't trust too much what codex people say. There are industry people in that codex organization with conflict of interest. They for instance approve pesticide residues in food, way above EU rules. In Australia, you can only label non-gluten food if it is up to  2ppm and not 20 ppm. They give scientific reasons and very different from supposed studies that states that nobody feels it above 20 ppm or more. 

[Sharona]

1 hour ago, gfjennie said:

good ideas! luckily he loves a vegan pesto we developed (with pistachios) and he likes things with almond flour and coconut milk or oil, loves avocados and eats tons of them, and I have been adding more olive oil to his stuff as well.... I think it probably is important to focus more on plant based solutions, so thanks for the suggestions and encouragement!! He likes peanuts too, but they seem like they can be hard on a tum if we eat too many...I think they just might be a little harder to digest.

I am glad I could help and encourage you. The older he gets it will become a lot easier for you and he can make his own choices. I find peanuts harder to digest as a rule. I use peanut butter to make a drop cookie and add shredded coconut as a treat. I like roasted almonds too for a snack. Your doing a great job. 

The pesto sound delicious too.

[Sharona]

55 minutes ago, marc9803 said:

I wouldn't trust too much what codex people say. There are industry people in that codex organization with conflict of interest. They for instance approve pesticide residues in food, way above EU rules. In Australia, you can only label non-gluten food if it is up to  2ppm and not 20 ppm. They give scientific reasons and very different from supposed studies that states that nobody feels it above 20 ppm or more. 

Thank you, I was wondering about that. Good to know.

[RMJ]

The FDA summarized the available literature on the dose response to gluten before issuing the labeling regulations.  There is an extreme variability in the literature for the dose to which people respond (symptoms and pathology). Some people had trouble with a few milligrams, others could tolerate hundreds.  

This makes sense to me.  I used to be responsible for the production of antibodies in laboratory animals for use in diagnostic tests. In these highly inbred animals, the responses to antigens were also quite variable.

The body can respond to very small amounts of an antigen.  In the current COVID trials for which protocols have been made available, one is using a dose of 30ug, which is 0.030mg, and people make antibodies to that.

There are tables starting on page B-1 (79 of 93) of this FDA document that summarize the data is anyone likes such things.

https://www.fda.gov/media/81500/download

[Sharona]

Interesting to know. I am not scientific but understand what your saying and reaction varies in individuals response to gluten. Those very sensitive and some not so much. I think the damage does happen regardless of whether your body reacts to it. I may be wrong but I try to read everything and try not to ingest any.

[gfjennie]

1 hour ago, RMJ said:

The FDA summarized the available literature on the dose response to gluten before issuing the labeling regulations.  There is an extreme variability in the literature for the dose to which people respond (symptoms and pathology). Some people had trouble with a few milligrams, others could tolerate hundreds.  

This makes sense to me.  I used to be responsible for the production of antibodies in laboratory animals for use in diagnostic tests. In these highly inbred animals, the responses to antigens were also quite variable.

The body can respond to very small amounts of an antigen.  In the current COVID trials for which protocols have been made available, one is using a dose of 30ug, which is 0.030mg, and people make antibodies to that.

There are tables starting on page B-1 (79 of 93) of this FDA document that summarize the data is anyone likes such things.

https://www.fda.gov/media/81500/download

I don't have any background in biology and was trying to understand the ttg levels - and this may be covered somewhere else in the site - is the ttg test just providing an indicator? or is the what the ttg test measures part of what is harmful to your body? Aside from the impact within the gut, I'm particularly interested in understanding what our doctors have called an overall inflammatory response - what is causing that and how (if at all) it can be measured. It may not be that simple, and I may be asking sideways questions, but I'm eager to understand this better if you have any insights.

 

[RMJ]

The ttg test is for antibodies to Tissue Transglutaminase, which is an enzyme that normally occurs in the human body.  That means that if you have high levels of the ttg antibodies you have antibodies against yourself, i.e. autoimmune.  However, the levels of ttg antibodies do NOT necessarily correlate with the amount of damage to the intestines.

Hope that helps a little?

[gfjennie]

3 minutes ago, RMJ said:

The ttg test is for antibodies to Tissue Transglutaminase, which is an enzyme that normally occurs in the human body.  That means that if you have high levels of the ttg antibodies you have antibodies against yourself, i.e. autoimmune.  However, the levels of ttg antibodies do NOT necessarily correlate with the amount of damage to the intestines.

Hope that helps a little?

 

3 minutes ago, RMJ said:

The ttg test is for antibodies to Tissue Transglutaminase, which is an enzyme that normally occurs in the human body.  That means that if you have high levels of the ttg antibodies you have antibodies against yourself, i.e. autoimmune.  However, the levels of ttg antibodies do NOT necessarily correlate with the amount of damage to the intestines.

Hope that helps a little?

that makes sense with everything I've heard and is a bit clearer

I'm still wondering about outside of the intestines, our doctors have said there is an overall "inflammatory" response - is this also caused by the antibodies produced against Tissue Transglutaminase? or is there some other biological process happening? 

[Sharona]

Gluten and Joint Inflammation

When a person with celiac disease or a gluten sensitivity eats gluten (gliadin and glutenin proteins) the immune system jumps into action, causing inflammation. This inflammation can affect the body's organs and soft tissue.

This is what happens to me and I never know how much I have ingested. The lesser amounts of gluten obviously causes less of a response to your  body. I do not know how to measure this. I know that it is causing this because the immune response thinks that it is a poison and your immune system is not working the same as others who can tolerate gluten. The reaction to something the immune system is mixing it up the gluten with a real poison that when your immune system reacts it is very similar to the same as gluten when ingested. The immune response is defective is what I believe.

I hope you understand this.

 

[RMJ]

Another part of the immune reaction to gluten in someone with celiac disease is the release of molecules called cytokines into the bloodstream.  When the body overreacts these can have systemic inflammatory effects.

[gfjennie]

12 minutes ago, RMJ said:

Another part of the immune reaction to gluten in someone with celiac disease is the release of molecules called cytokines into the bloodstream.  When the body overreacts these can have systemic inflammatory effects.

got it, thank you, that is very helpful

[marc9803]

Just now, gfjennie said:

I don't have any background in biology and was trying to understand the ttg levels - and this may be covered somewhere else in the site - is the ttg test just providing an indicator? or is the what the ttg test measures part of what is harmful to your body? Aside from the impact within the gut, I'm particularly interested in understanding what our doctors have called an overall inflammatory response - what is causing that and how (if at all) it can be measured. It may not be that simple, and I may be asking sideways questions, but I'm eager to understand this better if you have any insights.

 

A few weeks ago, I read a very good book about the dangers of wheat, gluten in a medical perspective, called " Wheat Belly (Revised and Expanded Edition): Lose the Wheat, Lose the Weight, and Find Your Path Back to Health". 

https://www.amazon.com/Wheat-Belly-Revised-Updated-Weight/dp/1984824945/ref=sr_1_1?dchild=1&keywords=wheat+belly&qid=1600808291&sr=8-1

 

Lots of your medical questions can be answered by that book. 

 

[knitty kitty]

On 9/21/2020 at 8:25 PM, gfjennie said:

incidentally is your shoulder pain in joints or muscles?

his used to be both, but felt it overwhelmingly in his leg muscles (he went from being a bit of a soccer player to barely being able to walk most mornings and also at the end of a school day). now he mostly has joint pain in his knees, and sometimes some muscle pain, but more often "deadness" where they just feel like it is hard to walk because they are fatigued, as though he worked out really hard even though he didn't

 

On 9/21/2020 at 8:37 PM, Sharona said:

In my shoulders I get muscle weakness and when I am typing on the computer my arms feel weak so I guess a bit of both the muscle weakness and fatigued with the gluten. 

What you should try is good fats to keep him full longer.  You could use nuts like almonds, walnuts and mixed nuts baking as ingredients with oils. I use oils like avocado and coconut and grapeseed oils to bake or fry. With salads I use olive oil. You can try to incorporate more of this in his diet to give him more energy. 

The muscle aches and fatigue may be due to thiamine deficiency.  We need thiamine to turn foods into energy.  Without enough thiamine, symptoms of fatigue and muscle aches are common.  

Thiamine needs magnesium to work properly.  Magnesium deficiency can cause fatigue and muscle cramps.

Checking for nutritional deficiencies is part of follow up care for Celiacs.

Talk to your doctor about supplementing with a B Complex supplement and magnesium supplement.

Hope this helps