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Omg...i Might Be On To Something


Rachel--24

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Daxin Explorer
Actually I was really sick when I was pregnant & when they told me it was twins, my first thought was "Thank God, I'll never have to go through this again!" (I really wanted 2 kids.) Of course the extreme nausea was probably from my undiagnosed Celiac.

My wife was also very sick (hospitalized) with our daughter. The Dr thought twins, which made us excited, but we only had the one. The ironic thing, now that I think about it, was that we named her Tasmin (Gaelic for Twin). We did not look at the meanings when we picked it though. We found out that sometimes Hyperemesis (very much up-chucking) can be brought on by the pregnancy hormones for no reason, and gerts worse with each one. However, in Canada they could control it with Diclectin. For some reason it was taken off the market in USA.


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dlp252 Apprentice
All very interesting to me since I have angioedema, but you know how many posts I come across on this board about people having hives/uticaria? It all has to relate somehow to the digestive process, lowered/heightened immunity, multiple food intolerances/allergies ...

And another thing, through my research I found out that meds for heart burn/reflux/GERD are mostly H2 blockers, as in histamine 2 blockers.

:blink: Okay, I'm taking two meds only...Zyrtec and Zantac75 (my GI had me on this for a couple months before that last endoscope to see if reducing acids helped the cells look more normal)....I'm trying to taper off the Zantac75, but maybe I should keep it in if I'm reading you correctly...or maybe it's not an H2 blocker, just acid.

:(:(:( Your welcom here!!!

I agree!!!

Green12 Enthusiast
:blink: Okay, I'm taking two meds only...Zyrtec and Zantac75 (my GI had me on this for a couple months before that last endoscope to see if reducing acids helped the cells look more normal)....I'm trying to taper off the Zantac75, but maybe I should keep it in if I'm reading you correctly...or maybe it's not an H2 blocker, just acid.

Well I have to do more research, but if I am understanding it correctly too, if meds for heart burn/reflux are H2 blockers then wouldn't that mean that histamine is the thing causing the heart burn/reflux???

Since I have been taking Claritin, absolutely no heart burn/reflux for me, and I was having it bad lately.

That's why I said, duh, duh, duh.......

The plot thickens :lol:

Hi Ryan and Robbin, good to see you both :)

Rachel--24 Collaborator
Rachel,

It is very intresting ,the histamine test,so if you have elvevated histamine level,(I guess ,you would)

what is the next step.? do you have any plan?

by the way your idieas and theories are wonderful.

elisabet

Thanks Elisabet,

Right now if it comes back elevated I dont have "master" plan in place....will have to work on that. I'm on a histamine restricted diet and I'll stay on that regardless of what the test says. Also, if it is positive I'll want to try and figure out why....something must be causing the levels to stay high. Hopefully my docs can help with that.

I forgot to get back to you regarding your question about my hair. Its fine...my thyroid dose was too low so it started falling out again but I've corrected the dose and it seems to be improving already. :)

Karen,

Cute avatar!! :D

Well...I finished the pee test. I really did end up bringing it to work and hiding it in the yogurt cooler. :lol:

Penguin...you can still stick around. We just needed to slow things down...thats all. Everyones still welcome here. :)

Julie,

Excellent scientificness!!

Yes...the plot does thicken.

Donna, maybe you could ask your doc about the histamine test??

CarlaB Enthusiast
Actually I was really sick when I was pregnant & when they told me it was twins, my first thought was "Thank God, I'll never have to go through this again!" (I really wanted 2 kids.) Of course the extreme nausea was probably from my undiagnosed Celiac.

Yea, this is what I had, too. The only thing I could eat was bread! Or so I thought ... it was a vicious cycle, sick, so eat bread, so get sicker ... It would have been nice to know back then!

AndreaB Contributor

Rachel

:ph34r::lol::lol::lol:

Well, Talitha was sick last night. Don't know if it was gluten from Saturday or a combo of glutening and too much rice flour products. She's doing fine so far today.

We are still up in the air about the dairy. From everything I've read pastuerization is not good.....but everything is pastuerized including juices. We have decided to indulge occassionaly in ice cream. Might have to see if we still have our ancient ice cream maker. It is electric but uses the mass ice and rock salt. Mitch's mother had gotten us an ice cream maker a few years back but we returned it since we didn't eat dairy.....should have kept it. That was somewhere around $80 up in Washington. I know California is more but what is the general price range. I forget the brand you all recommended, if we decide to get another, newer, greater ice cream maker.

We've decided if we stopped eating everything that was bad for us (for whatever reason) than we'd die because nothing would be left. Not to mention the polluted air which isn't good for us either. Still trying to decide the lesser of all the evils that they do to food, along with what we can afford, unfortunately.

Green12 Enthusiast
We've decided if we stopped eating everything that was bad for us (for whatever reason) than we'd die because nothing would be left. Not to mention the polluted air which isn't good for us either. Still trying to decide the lesser of all the evils that they do to food, along with what we can afford, unfortunately.

Very true Andrea. It's hard to figure out what to eat with so many factors to consider. Its a struggle everyday for so many of us.


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dlp252 Apprentice
Donna, maybe you could ask your doc about the histamine test??

I think I'll make an appointment with the HN doctors since they are now familiar with the test, lol. And, since I didn't get any help from the dermatologist maybe they can help figure out what's causing the itching...it definitely seems like a reaction to something. I first have to find all my paperwork from the physical I had in February so they can see all that.

miamia Rookie
Well I have to do more research, but if I am understanding it correctly too, if meds for heart burn/reflux are H2 blockers then wouldn't that mean that histamine is the thing causing the heart burn/reflux???

Since I have been taking Claritin, absolutely no heart burn/reflux for me, and I was having it bad lately.

That's why I said, duh, duh, duh.......

The plot thickens :lol:

Hi Ryan and Robbin, good to see you both :)

I would be very wary of any reflux/heartburn medications- They block essential acids you need for digestion. polus alot of times what they diagnose as reflux can actually becaused by a lack of acid in the stomach. I was on zantac and then nexium the nexium worked to stop my reflux and then I started to develope all these current problems. I stayed on the nexium and I truly believe it has a tremendous amount to do with me being this sick now. I have alot if info on the negative effects of acid reducing drugs and so on. i am going to see if I can find alink to some of the sites.

Miamia

dlp252 Apprentice
I would be very wary of any reflux/heartburn medications- They block essential acids you need for digestion. polus alot of times what they diagnose as reflux can actually becaused by a lack of acid in the stomach. I was on zantac and then nexium the nexium worked to stop my reflux and then I started to develope all these current problems. I stayed on the nexium and I truly believe it has a tremendous amount to do with me being this sick now. I have alot if info on the negative effects of acid reducing drugs and so on. i am going to see if I can find alink to some of the sites.

Miamia

I've read some bad things about them too...in fact I bought a couple of books on reflux and they said the same thing...I've also heard a lot of people have problems when they quit taking the meds, which is why I'm trying to get off slowly. I'm taking 1 pill (Zantac75), once per day (instead of 2 times)...and plan to go every other day soon (or maybe half a pill although I don't like splitting them much). At the time the doc said to take them, I was being wakened in the middle of the night with a horrible burning...kind of like being really intensely hungry to the point where it almost makes you ill...that kind of burning--it was constant though--he was pretty certain that the irritation from that is what was causing the cells to look weird in my enlarged ampulla of vater...so we did this test to see if it would change how the cells looked and apparently it did...I sure don't miss the awful burning though.

Green12 Enthusiast
I would be very wary of any reflux/heartburn medications- They block essential acids you need for digestion. polus alot of times what they diagnose as reflux can actually becaused by a lack of acid in the stomach. I was on zantac and then nexium the nexium worked to stop my reflux and then I started to develope all these current problems. I stayed on the nexium and I truly believe it has a tremendous amount to do with me being this sick now. I have alot if info on the negative effects of acid reducing drugs and so on. i am going to see if I can find alink to some of the sites.

Miamia

I agree mia mia, they do interfere with the digestive process.

I don't like taking Claritin, but I need to temporarily to help get the histamine load down because the angioedema has taken over my life. I'm working with an aucpuncturist too, histamine in Chinese medicine is related to heat and immunity so she is addressing those things as well as the liver. I'm hoping to get off the antihistamine as soon as I make some progress.

Also, I was thinking about the DOA enzyme from my scientificness post (diamine oxidase enzyme) that is in the mucosal lining of the intestinal tract. It said DOA activity is decreased in people with chronic hives or angioedema, DOA is the enzyme responsible for degrading dietary histamine.

This makes me wonder if this enzyme is deficient in everybody with multiple food allergies and sensitivities and that it just manifests itself differently from person to person regarding symptoms.

queenofhearts Explorer
Yea, this is what I had, too. The only thing I could eat was bread! Or so I thought ... it was a vicious cycle, sick, so eat bread, so get sicker ... It would have been nice to know back then!

With me, for some reason, the only thing that would stay down was dry Cheerios. After the boys were born I couldn't stand the sight of those O's! (They loved them of course.)

dlp252 Apprentice
I agree mia mia, they do interfere with the digestive process.

I don't like taking Claritin, but I need to temporarily to help get the histamine load down because the angioedema has taken over my life. I'm working with an aucpuncturist too, histamine in Chinese medicine is related to heat and immunity so she is addressing those things as well as the liver. I'm hoping to get off the antihistamine as soon as I make some progress.

Also, I was thinking about the DOA enzyme from my scientificness post (diamine oxidase enzyme) that is in the mucosal lining of the intestinal tract. It said DOA activity is decreased in people with chronic hives or angioedema, DOA is the enzyme responsible for degrading dietary histamine.

This makes me wonder if this enzyme is deficient in everybody with multiple food allergies and sensitivities and that it just manifests itself differently from person to person regarding symptoms.

I wonder if one can have hives without the spots...aren't hives red spots? I don't get the red spots until AFTER I've scratched the heck out of myself. <_<

miamia Rookie
I agree mia mia, they do interfere with the digestive process.

I don't like taking Claritin, but I need to temporarily to help get the histamine load down because the angiedema has taken over my life. I'm working with an aucpuncturist too, histamine in Chinese medicine is related to heat and immunity so she is addressing those things as well as the liver. I'm hoping to get off the antihistamine as soon as I make some progress.

Also, I was thinking about the DOA enzyme from my scientificness post (diamine oxidase enzyme) that is in the mucosal lining of the intestinal tract. It said DOA activity is decreased in people with chronic hives or angioedema, DOA is the enzyme responsible for degrading dietary histamine.

This makes me wonder if this enzyme is deficient in everybody with multiple food allergies and sensitivities and that it just manifests itself differently from person to person.

Julie - I have recently been hitting the books again and doing more research about a lot of different things. Here are some of the most interestin gthat could apply to any of us with food and environmental sensitivities-One interesting thing I was ready about are Systmatic Oral enzymes. - they strengthen the immune system, and help it repair itself. when the immune system malfunctions-and you develope a reaction to something you've ingested you produce histamines, adn antibodies that attack everything- good and bad- in the body. The SOE stimualte healthy production of messenger immune cells( cytokines) they reduce inflammation adn speed up the immunity by producing a cleansing effect and helping to break up whats at the core of the bodies immune/ inflammation reaction.

The one I heard the best things about is Wobenzym N - if you go to their site they have a lot of very interesting info.

ok thats all the science for now but I have a bunch of other stuff I am looking into and I willl post about them later.

Miamia

queenofhearts Explorer
I've read some bad things about them too...in fact I bought a couple of books on reflux and they said the same thing...I've also heard a lot of people have problems when they quit taking the meds, which is why I'm trying to get off slowly. I'm taking 1 pill (Zantac75), once per day (instead of 2 times)...and plan to go every other day soon (or maybe half a pill although I don't like splitting them much). At the time the doc said to take them, I was being wakened in the middle of the night with a horrible burning...kind of like being really intensely hungry to the point where it almost makes you ill...that kind of burning--it was constant though--he was pretty certain that the irritation from that is what was causing the cells to look weird in my enlarged ampulla of vater...so we did this test to see if it would change how the cells looked and apparently it did...I sure don't miss the awful burning though.

Do any of you have experience with Prevacid? My doc prescribed a daily pill & I took it for a while & then my prescription ran out. When I stopped I had ferocious burning, WAY worse than before I started, & having been down that rebound road with Sudafed, I've decided I'm not comfortable taking something with such wicked rebound. It might actually be okay if you eased off as you describe, but no one warned me about that....

Leah

Judyin Philly Enthusiast
:) Hi All! I am recovering from the trip. Not good at all.

Judy -when you had your pee experience, they probably gave you a diuretic of some sort. I am sorry it was so miserable for you, but honestly it made me laugh and dear one, I NEED all the laughs I can get right now.

This whole miserable disease has got me so low I can see worm belly. It is also a non-fun dysfunctional-fam thing type depression thingy that I will survive :blink: (lots of wordage there, lol)

Dear Robbin

don't know if you'll find this post...I sure hope so.

I'm so sorry you got soooo sick. I think our CA 'family' trip was such an eyeopener to me...We decided it would be a long time going back esp with celiac disease...it wasn't accepted as a disease rather a 'attention getter'

so sad really. We're missing a great fun wedding this weekend b/c we aren't going to spend the $$ to get insulted...puts hubby in a acqward position...

I'm glad the pee jug story could make a 'g sick puppy' laugh! I could finally laugh but only when thinking of the pee all over the van..servers then right as i know the jug lid was TIGHT when i dropped it off.

hugs and PLEASE FEEL BETTER SOON..iT'S BAD ENOUGH WHEN IT JUST THE GLUTENING BUT THE BAD TRIP MEMORIES..MAKE IT HORRID.I KNOW.

GET BETTER SOON.

MISS SEE YOU ON BOARD.

JUDY IN PHILLY

miamia Rookie
I've read some bad things about them too...in fact I bought a couple of books on reflux and they said the same thing...I've also heard a lot of people have problems when they quit taking the meds, which is why I'm trying to get off slowly. I'm taking 1 pill (Zantac75), once per day (instead of 2 times)...and plan to go every other day soon (or maybe half a pill although I don't like splitting them much). At the time the doc said to take them, I was being wakened in the middle of the night with a horrible burning...kind of like being really intensely hungry to the point where it almost makes you ill...that kind of burning--it was constant though--he was pretty certain that the irritation from that is what was causing the cells to look weird in my enlarged ampulla of vater...so we did this test to see if it would change how the cells looked and apparently it did...I sure don't miss the awful burning though.

Donna-

I did the same thing you did I weened myself off the reflux meds- it was hard each step I went down I felt!!! But within a day or so it went away. Finally I was off of them WE don't realize how powerful these meds are so its no suprise we feel such a dramatic effect when we stop taking them.

I find I can usually control my reflux through diet , I sleep somewhat elevated , and I know some people say they can't have it but I take pure glutamine powder mixedd with a little juice- for me carrot and I find it soothing. Aloe also is supposed to be helpful and it is very benign.

I hope some of this is helpful!!

Miamia

queenofhearts Explorer
My wife was also very sick (hospitalized) with our daughter. The Dr thought twins, which made us excited, but we only had the one. The ironic thing, now that I think about it, was that we named her Tasmin (Gaelic for Twin). We did not look at the meanings when we picked it though. We found out that sometimes Hyperemesis (very much up-chucking) can be brought on by the pregnancy hormones for no reason, and gerts worse with each one. However, in Canada they could control it with Diclectin. For some reason it was taken off the market in USA.

That's spooky about the name Tasmin! It's beautiful though, I can see why you picked it.

My docs told me my nausea was due to the increased hormone level with twins, so that could be it... but I suspect Celiac connections anyway, since it also does affect hormones.

dlp252 Apprentice
Do any of you have experience with Prevacid? My doc prescribed a daily pill & I took it for a while & then my prescription ran out. When I stopped I had ferocious burning, WAY worse than before I started, & having been down that rebound road with Sudafed, I've decided I'm not comfortable taking something with such wicked rebound. It might actually be okay if you eased off as you describe, but no one warned me about that....

I took Prevacid years ago, but not for very long...don't think I even finished the first prescription fill. I also don't think I took it every day. I'm not sure exactly where I heard that, but I think it was in one of the books I purchased recently on inflamation or on reflux.

miamia Rookie
I took Prevacid years ago, but not for very long...don't think I even finished the first prescription fill. I also don't think I took it every day. I'm not sure exactly where I heard that, but I think it was in one of the books I purchased recently on inflamation or on reflux.

donna-

the stuff i was describing to Jule i(systemic Oral enzyme) s recommended for inflammation I think you should read about them

dlp252 Apprentice
Donna-

I did the same thing you did I weened myself off the reflux meds- it was hard each step I went down I felt!!! But within a day or so it went away. Finally I was off of them WE don't realize how powerful these meds are so its no suprise we feel such a dramatic effect when we stop taking them.

I find I can usually control my reflux through diet , I sleep somewhat elevated , and I know some people say they can't have it but I take pure glutamine powder mixedd with a little juice- for me carrot and I find it soothing. Aloe also is supposed to be helpful and it is very benign.

I hope some of this is helpful!!

Miamia

Very helpful! I was trying to control it with diet first, but doc wanted me to take PrilosecOTC...I did for a week or two but it caused such bad abdominal pains that he had me switch to Zantac instead. That seemed to work without the pain...now that my endoscope is done I want to get off again, but since I took them everyday for 3 months wanted to get off gradually.

I sleep with the upper body elevated too. :D

donna-

the stuff i was describing to Jule i(systemic Oral enzyme) s recommended for inflammation I think you should read about them

Thanks, I will...it's a good sign that you are able to take them without reactions, that's good. :)

Green12 Enthusiast
Julie - I have recently been hitting the books again and doing more research about a lot of different things. Here are some of the most interestin gthat could apply to any of us with food and environmental sensitivities-One interesting thing I was ready about are Systmatic Oral enzymes. - they strengthen the immune system, and help it repair itself. when the immune system malfunctions-and you develope a reaction to something you've ingested you produce histamines, adn antibodies that attack everything- good and bad- in the body. The SOE stimualte healthy production of messenger immune cells( cytokines) they reduce inflammation adn speed up the immunity by producing a cleansing effect and helping to break up whats at the core of the bodies immune/ inflammation reaction.

The one I heard the best things about is Wobenzym N - if you go to their site they have a lot of very interesting info.

ok thats all the science for now but I have a bunch of other stuff I am looking into and I willl post about them later.

Miamia

Thanks mia mia for this information. I haven't heard of Systematic Oral Enzymes, will have to look into them.

Looking forward to your future posts about the other things you have been researching.

VydorScope Proficient

If you ever leave this thread... birthday pictures with gluten-free birthday cake can be found here...

Open Original Shared Link

:D:P:D:P

Rachel--24 Collaborator
Also, I was thinking about the DOA enzyme from my scientificness post (diamine oxidase enzyme) that is in the mucosal lining of the intestinal tract. It said DOA activity is decreased in people with chronic hives or angioedema, DOA is the enzyme responsible for degrading dietary histamine.

Julie,

This is where my focus is as well...I wonder how they can identify a deficiency (or can they)? Another thing I've been thinking about is carbs...particularly starches like potatoes, yams, rice, all that stuff. I get histamine reactions from too many carbs. I've read that too many carbs can lead to a rise in histamine levels...due to intestinal fermentation. We all know we are damaged and therefore arent digesting like a healthy person. This might explain why I did better on my candida diet....no carbs. I didnt have any of the head stuffiness type symptoms at all back then...no headaches either.

I'm wondering if the intestinal damage has created a DOA deficiency and on top of that with slowed digestion, due to both damage and low thyroid function (in my case), there is now a toxic level of histamine constantly circulating in the bloodstream.

We know that anything "fermented" = high histamines. So....if we cant digest starches very well they will ferment and in turn the histamine levels will rise. It makes sense to me. When I eat alot of starchy foods is when I get that strange sweet smell on my skin. Back when I was really researching the candida stuff I used to think of this smell as something fermenting inside me. Maybe I was right? If so....I wonder how it can all be fixed?

I know my digestion is too slow with my thyroid dose being too low...thats one thing. Also the GI told me I was digesting extremely slow.....then the OBGYN seeing all that movement on the ultrasound and saying that my intestines looked like they were trying to digest. Maybe my histamine levels are really high right now due to all of this??

The test results should be interesting. I got my blood drawn tonight. The lady wasnt really believeing me about the 24 hour urine test though. She asked me 3 times if I'd done it for a whole 24 hours. There wasnt much in the jug so she just couldnt believe thats all I had. I hope its enough cuz I dont wanna have to do it over again. Thats whats normal for me unless I drink more water....which I need to start doing. :rolleyes:

Green12 Enthusiast
This is where my focus is as well...I wonder how they can identify a deficiency (or can they)?

I don't know Rachel, maybe this is why they always put everyone on enzymes?

The carb issue is one I have also been battling. I know that when the function of our intestinal tracts has been compromised that there is abnormal fermentation of sugars in the gut. So basically yeah, like you said, all the carbs we eat ferment. I just can't go with out them I have no energy and that's when I have wasting, I burn my own tissue away eating like that.

It's darned if you do, darned if you don't

Hopefully they will have enough urine to work with, that would not be good if you have to do it over. I will keep my fingers crossed that all will go well.

Of course you can do what Judy did and tell them to stick it if they ask you to do it again :lol:

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    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
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