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Celiac And Interstitial Cystitis


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#1 Guest_mvaught_*

 
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Posted 05 January 2006 - 06:17 AM

Hi, I wondering if any of you also have interstitial cystitis. I have it and it seems that I have food related problems with that as well - of course it is a bunch of different foods that have nothing to do with gluten, like, well, soy and red wine to name a couple...(I have read that this is "normal" for people with IC). I got the interstim implant and that has helped a great deal, but still have issues with it when i eat or drink something "wrong." Anyway, I find it difficult to cut out gluten (dairy is a rough one too), and everything that affects my IC - there is a list of foods that are bad for IC and it includes almost everything one can imagine, of course except bread - ha, how is that for fun! If you can sympathize, please post so i don't feel so lonely. Of course, I never really feel lonely - this is such a great site!
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#2 danikali

 
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Posted 05 January 2006 - 07:49 AM

Hi, I wondering if any of you also have interstitial cystitis. I have it and it seems that I have food related problems with that as well - of course it is a bunch of different foods that have nothing to do with gluten, like, well, soy and red wine to name a couple...(I have read that this is "normal" for people with IC). I got the interstim implant and that has helped a great deal, but still have issues with it when i eat or drink something "wrong." Anyway, I find it difficult to cut out gluten (dairy is a rough one too), and everything that affects my IC - there is a list of foods that are bad for IC and it includes almost everything one can imagine, of course except bread - ha, how is that for fun! If you can sympathize, please post so i don't feel so lonely. Of course, I never really feel lonely - this is such a great site!


All I can say is YES YES YES! I also have that problem and it's horrible, isn't it? To have to deal with gluten intolerance ON TOP OF the horrible bladder issues! May I ask what foods bother you exactly. I've noticed that I can't have coffee, (even decaf.), any alcohol these days, sugar in processed or "fake" foods, chocolate and salt. Does salt effect you? Also, it's worse a couple days before my period so I have to drink TONS of extra water (on top of the tons I already drink!).........does this happen for you too?

It's funny because I was just going to bring this topic up! So don't worry, you are def. NOT alone!
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#3 Guest_mvaught_*

 
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Posted 12 January 2006 - 12:15 PM

All I can say is YES YES YES! I also have that problem and it's horrible, isn't it? To have to deal with gluten intolerance ON TOP OF the horrible bladder issues! May I ask what foods bother you exactly. I've noticed that I can't have coffee, (even decaf.), any alcohol these days, sugar in processed or "fake" foods, chocolate and salt. Does salt effect you? Also, it's worse a couple days before my period so I have to drink TONS of extra water (on top of the tons I already drink!).........does this happen for you too?

It's funny because I was just going to bring this topic up! So don't worry, you are def. NOT alone!


Hi there - partner in IC! =) Glad we found each other. Well, I have found that, yes, alcohol affects it - especially red wine (though honestly sometimes I just bear with it for some rum). it is wierd, because it seems that some foods/drink affect me in certain ways and others affect me in others - for example, 2 glasses of red wine means frequency and urgency and pain, while 2 rum drinks (just go with it since i am already on this example) will only cause the frequency (and maybe minor urgency, but not too bad). so, i guess i have found that foods affect me categorically. Soy Soy Soy is bad bad bad, although I have been able to tolerate a very small amount (like once a month or so) an a very infrequent basis. Orange juice (though the Low Acid kind seems better), vinegar, chocolate for sure. I have the coffee problem as well (though decaf seems to only affect the frequency in small, infrequent amounts). Hmmm, I haven't though of testing sugar - my husband has a carnitine deficiency and cannot have sugar - so i eat sugar free because of him - though I have found that nutra-sweet affects me where as Splenda seems better. I am also unsure about salt - since I put it in everything, but I do think that lots of salt does seem bad (now that I think of super salty foods - yes, I think they do). Juices in general are hard (cranberry juice - especially!) but the pear juice seems ok. Oh, and finally tomatoes and anything that contains them, they cerainly affect me. And I am the same as you, before and around my period is torture - does the pain and irritation also seem to shoot through your legs? It is really awful - i always dread the days before my period for this reason. Have you seen a doctor about your IC? I have the interstim implant and it has really changed my life - though obviously not a complete cure - but the day to day is better (and sex is not so awfully painful). I would say that I have had about a 70% improvement as long as I don't eat too badly. For me, it was worth it, because even cutting out the "bad" foods was not helping (and I couldn't sleep, having to pee literally over 50 times a night and it was very painful - but never did I have an infection). anyway, as I said, it was worth it for me, so there is some hope for treatment =). Let me know what other foods affect you - because I sometimes don't think about things like sugar and salt - I wonder what else I am missing.

-Michelle
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#4 danikali

 
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Posted 12 January 2006 - 12:35 PM

Wow! You are practically explaining my bladder to a T! Yes, I get shooting pains in my legs before and during my period and I also get a weird, 'pulling' feeling on my urethra. I don't really know how to explain it, but it's not a burning, although I do get that from time to time, but it feels like something is pulling it! I know, weird! I also notice that it happens very frequently if I've eaten sugar. I used to have candy like 2 times a day, like sweetarts, or neccos, or something. Hm....I think I named all of the things that trigger my bladder already, but now I'm starting an elimination diet to find out what foods are bothering the other parts of my body! <_<

I think I've learned to control the cystits for the most part from my diet changes and drinking TONS of water instead of soda or coffee, except I feel like there are no connections to food and the symptoms I get around my period......maybe the longer I am gluten free and I heal, these symptoms will go away too......I hope. :huh:

May I ask how long you have been gluten free? Hopefully we are just dealing with this because of the years of eating gluten and we'll be completely cured eventually. What do you think? Also, do you get a really bloated stomach when your symptoms are at their worst? It's horrible how there's the gluten thing, which if I eat, I look pregnant, and then there is this annoying bladder thing that also makes me blow up like crazy! Ugh!

Oh and yes, of course, ALL JUICE, ESPECIALLY CRANBERRY AND ORANGE JUICE are off limits for me.
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#5 Ursa Major

 
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Posted 12 January 2006 - 01:40 PM

I also have had bladder problems, even though it was never diagnosed as anything but an irritated bladder or bladder infections.

Anyway, the reason I am answering the two of you is, that you sound like you might be having an intolerance to salicylates. Here is a link to another thread that might shed some light on this for you. Look at the lists and see if you don't recognize other things that cause a problem.

The ultimate test is to take Aspirin (as it is salicylic acid). If you don't react to it, then it can't be salicylates that are the problem (I am testing the Aspirin tomorrow to know if I am intolerant to them myself).

Link to thread on salicylates
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#6 Guest_mvaught_*

 
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Posted 12 January 2006 - 02:48 PM

Wow! You are practically explaining my bladder to a T! Yes, I get shooting pains in my legs before and during my period and I also get a weird, 'pulling' feeling on my urethra. I don't really know how to explain it, but it's not a burning, although I do get that from time to time, but it feels like something is pulling it! I know, weird! I also notice that it happens very frequently if I've eaten sugar. I used to have candy like 2 times a day, like sweetarts, or neccos, or something. Hm....I think I named all of the things that trigger my bladder already, but now I'm starting an elimination diet to find out what foods are bothering the other parts of my body! <_<

I think I've learned to control the cystits for the most part from my diet changes and drinking TONS of water instead of soda or coffee, except I feel like there are no connections to food and the symptoms I get around my period......maybe the longer I am gluten free and I heal, these symptoms will go away too......I hope. :huh:

May I ask how long you have been gluten free? Hopefully we are just dealing with this because of the years of eating gluten and we'll be completely cured eventually. What do you think? Also, do you get a really bloated stomach when your symptoms are at their worst? It's horrible how there's the gluten thing, which if I eat, I look pregnant, and then there is this annoying bladder thing that also makes me blow up like crazy! Ugh!

Oh and yes, of course, ALL JUICE, ESPECIALLY CRANBERRY AND ORANGE JUICE are off limits for me.


Hi again Danielle - I definately get the bloating as if I am pregnant too but I haven't been able to differentiate if the bloating comes from gluten or bladder issues, regardless - isn't it awful?! I get that pulling feeling too, not a burning but pressure or something. I haven't been gluten free long, actually the way that I discovered that I have celiac disease is by going gluten free and noticing that it helped. So, I went back on it (confirmed that it made me feel horrible) and got my bloodwork today. I did notice that when I was off of the gluten, my bladder seemed better, so I really do think that when our bodies have had enough time to heal that it will be much better. (By the way, things that contain citric acid and i think anything that is acidic affects the bladder, also apparently anything processed or containg preservatives can be bad). Again, I haven't been off gluten for long, but when I was, i did notice a difference - but still no coffee. I don't really eat candy or sweets, so I guess that is why I haven't made a sugar connection.

Here is link to IC support diet stuff - it is pretty helpful, it has a list of various food (again, some you'd never think of) that are good, bad and inbetween...

http://www.ic-networ...et.html#topfive

Like celiac disease, IC is apparently auto-immune related, so those of us that also have other auto-immune problems, it makes sense that these are all connected.
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#7 Guest_mvaught_*

 
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Posted 12 January 2006 - 03:02 PM

I also have had bladder problems, even though it was never diagnosed as anything but an irritated bladder or bladder infections.

Anyway, the reason I am answering the two of you is, that you sound like you might be having an intolerance to salicylates. Here is a link to another thread that might shed some light on this for you. Look at the lists and see if you don't recognize other things that cause a problem.

The ultimate test is to take Aspirin (as it is salicylic acid). If you don't react to it, then it can't be salicylates that are the problem (I am testing the Aspirin tomorrow to know if I am intolerant to them myself).

Link to thread on salicylates


IC is really hard to diagnose, but I was diagnosed with it...from my understanding all acids (especially those that are in man-made form such as citric acid) are bad for those with IC, so my assumption is that is probably the case....I haven't ever tried the aspirin test, but I do know foods that affect me and that even eliminating all of those did not help (as well as trying the bladder meds that are available - seen the gotta go commercials?).

The implant, for me was the way to go as I am only 30 and was completely incontinent, etc (and this is something I have always had, as long as i could remember, but it had gotten worse over the years. I will try the aspirin, test, though after looking at the thread you sent- it seems that there is a relation to asthma and sinus problems, which I really don't seem to have, nor do I seem to have sensitivity to things like perfumes - or at least not that i know of, but I am getting more and more confused in general with what is wrong with me and my regular doctor (which I have to see before specialists) is really clueless (and not a good doctor).

If you continue to have problems with your bladder and they seem unbearable, you should try to find someone that is very familiar with IC. There is no known cure for it (the implant I have is only something that stimulates the nerve to make me not be so bothered by it - but also not a cure), including dietary changes. As I said, it took years to get that diagnosis for me (and even many urologiest are unfamiliar with it) Check out this site for some info on it:

http://www.ic-network.com/

I was lucky to find a great, sympathetic urologist that says he is convinced all of my (and I am sure this applies to all of us with celiac disease) problems are related - specifically auto-immune related. he described it as my body being "hard wired" differently and that all of the same group of people have the same things. I am sure that he is right, since so many of us have other problems aside from celiac disease. Anyway, I hope your Aspirin test gives you some answers! Let us know how it goes!

-Michelle
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#8 Guest_mvaught_*

 
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Posted 12 January 2006 - 03:21 PM

Oh and when you look at the food list - they mention a product called Prelief, I 've tried this stuff and it actually does help the bladder - so it is worth a shot (of course, I'm not sure if the product contains gluten or not - so something to check on). Fortunately, the list, though long and frustrating is helpful in finding what things bother you specifically. I didn't do a total emlination diet, because I found that the things that bother me - let me know, so I just try to listen to my body as I eat (novel concept, eh? - lol)

-Michelle

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#9 danikali

 
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Posted 13 January 2006 - 07:28 AM

Wow! Thanks for all of the info. I never got an official diagnosis of IC either, but I know I have it because I researched it like crazy for about 4 months straight. Then when I went to see the Urol., she had no idea what IC even was (like you mentioned) and told me that I just have "Irritable Bladder." The same dumb excuse that GI's give when they can't find anything with your colon. It's all bull, if you ask me :P

Anyway, how did your tests come out for Celiac, Michelle? And how about the asprin test Ursula?

It's funny because I've been on and off Pepto Bismol every time I get glutened. Well, I had some yesterday and at night, for like 5 hours, I couldn't breath right. My tight was chest and I could only take little breaths. Then I read the back of the Pepto Bismol bottle and read "Don't take if you are allergic to salicylates. It made me think. But then again, I've never had this problem before while taking Pepto, so maybe it was something else all together.

And congrats on your PhD. Michelle. I see it in your signiture. :D
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#10 danikali

 
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Posted 13 January 2006 - 08:27 AM

Actually, I just looked over the food list for salicylatyes, and I must have this problem! Every single thing in the Bad List bothers me, and I'm having this breathing problem right now which is probably because I kind of overdosed on Pepto yesterday and on the back of it it said "DO NOT TAKE IF YOU ARE ALLERGIC TO SALICYLATYES"

WOWWWWWWWWW
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Danielle (Dani)

Diagnosed with Celiac Disease by Dr. Green (gene HLA DQ8) 1/05/06
Diagnosed: Gluten Sensitive through enterolab 11/17/05
Diagnosed: Casein Sensitive through enterolab 3/7/06

Diagnosed: Interstitial Cystitis (IC) 07/26/06



I finally put my picture on because it doesn't look like I'll be eating ANY cake on my Wedding day..........I'm the one in the middle.

Intolerant to: (besides gluten)

Casein
Peanuts (can handle very small amounts)
Any kind of additives or preservatives

#11 Guest_mvaught_*

 
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Posted 13 January 2006 - 01:21 PM

Hey Danielle!

I am still waiting for my celiac test results...Hopefully next week sometime. My doctor was being such an ass yesterday, becuase he has spent all summer long doing colonoscopies, endoscopies, capsule endoscopy, barium, etc. and came up with nothing - although when he did the colonoscopy, my colon was so inflamed (colitis, espohogitis and gastritis) that he thought i had crohn's (how dare he comes to the conclusion nothing is wrong), so he reluctantly did the bloodwork yesterday. Anyway, we'll see, but I am going of gluten again anyway (began today).

I really don't know about me and the salicylates. I am going to try the aspirin test, but I want to be gluten free and feeling better first so that can actually tell a difference - my body is so run down because I ate a bunch of gluten knowing I was going to have the bloodwork done - ughh. Anyway, after I feel better, I'll try the aspirin - however, I don't recall ever having a reaction to pepto or aspirin in the past (and don't have the breathing problems you memtion).

Yeah, you are right about the IC. I was really lucky to get a diagnosis of having it, but honesty it was only because my doctor studies it specifically (he just happened to do this - I had no idea). When I went to my first visit - I told him my "story" and he immediately before doing tests, said," I know what you have"...Then he ran all of the tests (cystoscpoies - ouch, MRI, etc) and confirmed the diagnosis. I think the other thing that had him convinced was my age....only 29 when I went to him and as he said "Whenever I see someone as young as you with this many problems, it is almost always IC."

I think that I am driving my husband crazy, I'm so moody from being on the gluten (which he said that when i started back on it - he can tell the difference in me immediately). I'm lucky, because he is really supportive, but boy do I feel moody. And, yes, I am sure you can imagine the stress we are both under trying to finish our doctorates at the same time (both working on dissertations and preparing to take comprehensive exams). We are happy about all of that - Thanks for your good wishes!

Anyway, sounds like you definately have an answer with the salicylates. Maybe between cutting out those and gluten and whatever bothers you on the IC list, you will be like normal again (of course, not sure what you are left with - water??)

-Michelle
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#12 Ursa Major

 
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Posted 13 January 2006 - 06:08 PM

Thanks, Dani and Michelle for your support. Dani, I am glad I may have helped you find what may be causing your problems on top of gluten.

I don't think I have IC. I have been somewhat incontinent since having a cesarean section in 1981, because the catheter gave me a bladder infection. I've had recurring infections, irritation and stress incontinence ever since. And two more C-sections, and my bladder being ripped during a hysterectomy and having to wear a catheter for two weeks (to give the bladder a chance to heal after it was repaired) four years ago didn't help any. But my symptoms aren't really like IC.

Right now my bladder is giving me problems again, and I have burning. But I think that is because I ate eggs two days ago!

I decided to test the lectin theory first. I ate rice on Monday, which gave me a terrible stomach ache and just about knocked all my energy out of me. I woke up at 3:00 PM the next afternoon, and thought my clock must have stopped! I also got terrible back pain.

But then I read that somebody said that rice dream isn't gluten free, and had put some into something I baked the day before. Meaning it could have been gluten.

So, I ate some scrambled eggs two days ago, and they made my hands, feet, knees and back ache, as well as a headache the next day, and today I have diarrhea and that burning in my urethra that I haven't had for quite a while (to be accurate, since I went off gluten and lectins). I also feel like I have to go to the bathroom all the time, even though I know I don't really have to. I was hoping I could put the lectins back into my diet, but no such luck. At least now I know for sure.

I will try the Aspirin tomorrow (and hopefully I won't be sick for the rest of the weekend). I really don't want to be allergic to salicylates, too! Now that I found out that chocolate is a huge problem as well (my favourite treat in the world) I really want to be able to at least eat lots of fruit again!

I'll keep you updated on my experiments (I wished I could use a different guinea pig, though).

Ursula
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#13 Guest_mvaught_*

 
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Posted 17 January 2006 - 12:36 PM

Actually, I just looked over the food list for salicylatyes, and I must have this problem! Every single thing in the Bad List bothers me, and I'm having this breathing problem right now which is probably because I kind of overdosed on Pepto yesterday and on the back of it it said "DO NOT TAKE IF YOU ARE ALLERGIC TO SALICYLATYES"

WOWWWWWWWWW



danielle - good news...Prelief is gluten free. Here is the email I got:

Yes, Prelief is gluten free.

Betty Corson
Customer Service
1-800-994-4711

Anyway, this stuff really does help - you should try it. I get it from Walgreens, and it is with the stomach meds (usually right next to heartburn stuff).

-Michelle
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#14 Mahee34

 
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Posted 17 January 2006 - 01:06 PM

thanks for the link to this thread, i apparently just overlooked it while searching around..........my experience with IC isn't so much the urgency to go, but frequency and issues with completion....but the painful sex is the worst part for me..

all of this is so frustrating after going through the surgery for endometriosis only to find out it was all for nothing
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#15 traveljunkie

 
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Posted 21 January 2006 - 07:23 PM

I'm so glad I foumd this thread! The information you ladies have posted have answered a lot of my questions. I'm scheduled for testing of my bladder and uterus on Feb.2. Your symptoms are the same as mine. My bladder issues have gone from bad to worse! I always had to pee frequently but lately it's every 10 minutes. I'm not kidding. My drs say it may be fibroids or endometriosis but after reading your experiences, it may be IC. On my birthday I had wine, and I had to pee so many times, my friends started to laugh...I couldn't help it, it was really bad!! I went probably 15 times in 4 hours. Then my hubby took me flying and i had to have him land within 20 minutes to use the bathroom.Very inconvenient! :P That was the last straw for me, and I booked an appt. Anyways, I think I'll watch my diet and see if I notice a difference with my bladder. Thanks for the link on the diet...very useful! I also get bloated and experience burning. Lately, painful sex has become a symptom as well. Any other info you'd like to share would be appreciated! :)

Charlene
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