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non-celiacs gluten sensitivity

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Posted 7/19/2021 10:17 PM (GMT 0)
Anyone else look into this?

I'm reading this book by Dr Datis Kharrazian, Why isnt my Brain Working, which is fantastic. But he has a chapter on gluten. Basically says even if you test negative for Celiacs, you can still have a gluten senstivity. This much I knew. But I didnt realize that it can manifest in so many different ways and is an autoimmune disease that can be as severe as Celiacs. I just figured it was another sensitivity, a few hives or whatever. It isn't picked up on endoscopy like Celiacs, and can manifest in the joints, brain, skin...and doesnt always have gut symptoms. Can manifest as neuro-immunity, fibromyalgia, chronic fatigue.

https://www.amazon.com/isnt-brain-working-revolutionary-understanding/dp/0985690437

Anyway, tested negative for Celiacs antibodies and my endoscopy for Celiacs was clean. But I mentioned how last time I went gluten free/ketogenic for 6m, when I came out the first time I had a piece of bread I felt awful, like I was gonna feint. And then stomach had like a knot in it. This happened multiple times and stopped eating it. I never noticed this before when eating gluten, almost like after 6m not on it my body wanted to alert me to stay way.

So now I'm back in ketosis and feeling much better. White blood cell count rising again. Is it possible this is a big piece of the puzzle?

Cyrex Array #3 apparently runs all the antibodies for non-celiacs gluten:

https://www.joincyrex.com/the-cyrex-system/array-3x-wheat-gluten-proteome-reactivity-and-autoimmunity

Some interesting case studies:

https://www.hindawi.com/journals/crii/2013/248482/#materials-and-methods

Post Edited (dcd2103) : 7/19/2021 4:46:17 PM (GMT-6)

Posted 7/19/2021 10:37 PM (GMT 0)
Is it all starch you need to stay away from or just gluten?
Posted 7/20/2021 5:22 AM (GMT 0)
It is interesting how there are several ways gluten can affect people. Dr K was one of the first to tell Hashimoto patients to try 100% Gluten free and ...corn free. Both of which were triggered on my LEAP MRT (cytokine release) test. Some say its not accurate, and some like me had proven results mostly in the thyroid department. Im also a non-celiac.
Posted 7/20/2021 6:10 AM (GMT 0)
Dcd, I wonder what is your thoughts about candida as a possible cause behind a lot of symptoms folks are dealing with...Have you ruled it out already...?
Posted 7/20/2021 8:28 AM (GMT 0)
Gluten is one of the things I will eat very rarely, even when I reach full health. Maybe 3-4 times a year at max, so I could enjoy some restaurants.

I used to be gluten and grain-free for a long while and that helped a lot.
Posted 7/20/2021 10:37 AM (GMT 0)
i am in a similar camp

i have been eating ketogenic wholefoods paleo type diet for around 2 years now - around 20g of carbs a day mostly from non starchy veg.

initially it was because all carbs triggered more brain fog, fatigue, joint pain, stiffness etc and i would generally feel ill/ rough - and this was significantly improved when i went ketogenic - all those symptoms reduced by about 50%

i now eat a very small amount of gluten free organic oats - ( around 20g a day ) but continue to make a particular effort to avoid gluten. probably eat it v v occasionally like once in 6 months - similar to deep sleep.

every time this happens i often notice almost immediate twinges / pain in my abdomen - not severe - but a sign it does not agree - poss a bit more brain fog / but mild.

my view is i am just more sensitive to it than most - but since i suspect leaky gut - and zonulin causes the tight junctions to be less tight even in people who have no adverse reaction to gluten at all - i think that's a reason enough to avoid it - i think of it as an inflammatory food - like industrial seed oils and sugar.

also - i very much doubt there is a test that can detect every auto-immune reaction to gluten - like auto-immune reactions in general - i simply don't think we have discovered them all yet

it does not surprise me to hear than many of us here are reporting v similar things - we are basically a sub-population with messed up gut function - and prone to be super sensitive to stuff the non-chronically ill population would not notice - my self included before i got ill.
Posted 7/20/2021 12:01 PM (GMT 0)
Yea didnt mean to imply we can test for all the immune reactions.

Just that there is a wide array of antibody tests available against different parts of the gluten and wheat proteins, yet when they test for Celiacs they will only test against Transglutaminase-2 and Deamidated Gliadin. So people w/ gluten sensitivity will be told there is no autoimmune reaction when those two tests come back negative.

I went to several board-certified gastroenterlogist websites and it states in explicit terms that Celiacs is an auotimmune disease, gluten sensitivity is not. Others at least state that they do not know what causes gluten sensitivity. Very weird this world of medicine is.

Also, I should state that this sensitivity is NOT an allergy. Allergies are IgE mediated. This is IgG. If you are actually making one of these antibodies it is autoimmune, not allergic.



Antigens Tested (IgG and IgA tested separately for each antigen)
Wheat
Wheat Germ Agglutinin
Non-Gluten Proteins - A
Non-Gluten Proteins - B
Gliadin Toxic Peptides
Native + Deamidated Alpha-Gliadin-33-mer
Alpha-Gliadin-17-mer
Gamma-Gliadin-15-mer
Omega-Gliadin-17-mer
Glutenin-21-mer
Gluteomorphin + Prodynorphin
Gliadin-Transglutaminase Complex
Microbial Transglutaminase
Transglutaminase-2
Transglutaminase-3
Transglutaminase-6
Posted 7/20/2021 12:29 PM (GMT 0)
dcd,

You tested negative for Celiac antibodies. Were your test results zero or were they below the positive range?
Posted 7/20/2021 12:37 PM (GMT 0)

dcd2103 said...
Yea didnt mean to imply we can test for all the immune reactions.

Just that there is a wide array of antibody tests available against different parts of the gluten and wheat proteins, yet when they test for Celiacs they will only test against Transglutaminase-2 and Deamidated Gliadin. So people w/ gluten sensitivity will be told there is no autoimmune reaction when those two tests come back negative.

I went to several board-certified gastroenterlogist websites and it states in explicit terms that Celiacs is an auotimmune disease, gluten sensitivity is not. Others at least state that they do not know what causes gluten sensitivity. Very weird this world of medicine is.

Also, I should state that this sensitivity is NOT an allergy. Allergies are IgE mediated. This is IgG. If you are actually making one of these antibodies it is autoimmune, not allergic.



Antigens Tested (IgG and IgA tested separately for each antigen)
Wheat
Wheat Germ Agglutinin
Non-Gluten Proteins - A
Non-Gluten Proteins - B
Gliadin Toxic Peptides
Native + Deamidated Alpha-Gliadin-33-mer
Alpha-Gliadin-17-mer
Gamma-Gliadin-15-mer
Omega-Gliadin-17-mer
Glutenin-21-mer
Gluteomorphin + Prodynorphin
Gliadin-Transglutaminase Complex
Microbial Transglutaminase
Transglutaminase-2
Transglutaminase-3
Transglutaminase-6

that's a pretty thorough list - way better than the standard test
Posted 7/20/2021 12:57 PM (GMT 0)

WalkingbyFaith said...
dcd,

You tested negative for Celiac antibodies. Were your test results zero or were they below the positive range?

Tissue Transglutam Ab IgA Result: <2 U/mL

0 - 3 U/mL
Negative 0 - 3
Weak Positive 4 - 10
Positive >10

I've had 2 endoscopies both of which were negative for celiacs as well
Posted 7/20/2021 2:04 PM (GMT 0)
I read a lot on human evolution and human migration. I dont think humans are supposed to consume gluten/wheat it was forced upon us to avoid starvation. Our bodies tried to adapt but have failed. Humans are just in denial thats its a ok food to consume. That said I think I had gluten last night for the first time in 3 years. I didnt implode yet it was consumed accidentally.
Posted 7/20/2021 7:15 PM (GMT 0)

dcd2103 said...

WalkingbyFaith said...
dcd,

You tested negative for Celiac antibodies. Were your test results zero or were they below the positive range?

Tissue Transglutam Ab IgA Result: <2 U/mL

0 - 3 U/mL
Negative 0 - 3
Weak Positive 4 - 10
Positive >10

I've had 2 endoscopies both of which were negative for celiacs as well

////////////////////////////////////////
By the time my son was tested he was > 10

Took awhile of GF only eating to lower his number.
Poor guy -
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