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Celiac And Interstitial Cystitis


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85 replies to this topic

#46 jillb

 
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Posted 29 November 2007 - 02:12 PM

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!



This is all great information. I am gluten intolerant and have IC and have also experience the extreme bloating that feels like I am pregnant. I try to figure out if it is my colon or bladder. My GI Dr. put me on levbid for my colon, but it does help somewhat with the bladder. It doesn't seem to help with high acidic foods though. I have the same pulling pain. Can you tell me what the bubble gut is? I have seen this a number of times in the post and I think I have it, but is it related to the colon or bladder? Is it a sign of current leaky gut or is it just inflammation? I noticed this in your signature.
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2006 Interstitial Cystitis
2007 Gastritis, errosive esphogitis diagnosis,
negative blood work and biopsy
2007 Gluten Intolerant (Celiac self-diagnosis)

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#47 loraleena

 
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Posted 30 November 2007 - 07:36 AM

I have IC. I get bloated daily, but when my bladder is flaring it looks like I am 5 months pregnant. I get pulling pain to. I read something about fluids building up in the area due to the flare. I can't remember exactly. Type in distended abdomen with IC and you should get some info.
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#48 aliciam

 
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Posted 19 February 2008 - 10:17 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!



Hey! I am new to this forum. I have the same exact problems. Ever since I have been on a strict gluten-free diet my health is normal except for constant bladder pains. I seriously can't handle this pain anymore. I constantly have the burning feeling when I use the bathroom. My doctor prescribed me elmiron and she said that is shoud take 3-6 months for it to actually work. I am hoping this helps. I do notice that certain foods and drinks irritate it, so I try to do the whoel process of elmination. I never heard of interstim implant. Could you please give me more information about this. Thanks.

Alicia
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#49 loraleena

 
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Posted 20 February 2008 - 07:17 AM

Hi all,
I have gluten intolerance and IC. My IC was in remission even before going gluten free. It really kicked in after another UTI 2 years after going gluten free. I really believe a lot of IC is candida related. I think this may be the case for me. I currently take Cysta-q (with Quercitin) a natural remedy for IC. I also take 4 doses of 5-6 pellets of the homeopathic Cantharsis. The latter I can't do without. It really helps the pain and frequency. I am currently about to look into a naturaopathic doc who specializes in IC and gastro issues including gluten intolerance. His name is Dr. Snow and his is in the Woecster Ma. area. Not far from Boston. He has a website if you would like to check it out. I encourage any of you with IC to check out the IC Network and join their forum. It is very helpful. I have been educating those over there about celiac and gluten intolerance! Good luck to all.
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#50 scotty

 
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Posted 25 February 2008 - 12:46 PM

hello there everyone with IC. it would be nice to share ideas so i am joining the thread. i have not been clinically diagnosed but theres enough symptons that match exactly. i can't really afford mutlitple tests that tell me nothing anyway and diet has helped relieve the bladder. most people think it is diabetes when i tell them my issues. needless to say i would not be here if i did not need assistance.

what i am wondering immediately...is this thee IC thread. theres the Candida. the Lyme. the Omg...?

also i am wondering if it is or is not recommended to try taking enzymes with IC. dealing with this candida/leaky gut issue i am trying things here and there to aid in digestion. i have been taking L-glutamine for almost 2 weeks now without much problems it seems. pua d'arco too but that seems to be begining to build and irritate more and more of course i am always eating things which affect me so who knows if i am weeding them out still or what. anyway are these things ok for IC, generally--just to rule them out should problems arise. also i seen that something called L-arginine was helpful and over the counter so without going through the testing to get something prescribed wchich is in the future i'm sure...think i can get the L-arginine at organic store?

thanks,

scotty
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only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended
*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)
*Winter '06 developed severely swelled legs with rashes, white tongue
*Self-diagnosed; Gluten Free Spring '07
*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)
*Celiac.com diagnosed IC Summer '07
*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

#51 loraleena

 
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Posted 26 February 2008 - 04:35 PM

Hi Scotty, I think we've met on the candida thread. Anyway the diet is so important. You really need to go on the IC diet strictly, then slowly add things in one at a time to see if they cause bladder issues. It is hard to do with the gluten thing, but it helps. Also, try Prelief before every meal. It gets rid of the acid in your food. It is natural and is harmless. You can buy it at Walgreens. You should take 2 or more between meals. Prelief is gluten free. I also take enzymes before every meal.
Have you been on the ICNetwork forum? There is lots of info on the connection between IC and candida and suggestions for natural things to use for IC. I have heard that Cystoprotek really helps (it has Quercitin and MSM and Glucosamine which are all good for rebuilding the lining of the bladder. Also Desert Harvest Aloe capsules are supposed to help a lot. Stay away from Aloe juice because it has citrus acid in it which will kill your bladder!! I personally take Cysta-Q (natural formula with Quercitin) and I use a homeopathic remedy called Cantharsis. I take 5-6 pellets of 30c potency 3-4 x a day depending on my discomfort. It really helps!! Also drink lots and lots of water. Make sure it is filtered. Never drink tap water.
I have heard Arginine is good, but be careful if you get coldsores because Arginine can trigger them.
Scotty, why don't you PM me with what you eat on a typical day and I will see if I can notice any foods that might be bothering you. Prelief is a lifesaver. I would definitley try that right away! Good luck.
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#52 imsohungry

 
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Posted 26 February 2008 - 05:24 PM

Hey you guys :)

I just gotta get this out of my system! ARHHHHHHHHHHHHHHHHHHHH :blink:

O.k...I feel better. :rolleyes: Honestly, I've been in a flare for over a month now; most recently it's probably due to the bladder cocktails I'm getting once a week via catheter.

I cannot figure out any particular food that irritates my bladder. Most of the time (thankfully) I do O.K. with my IC, but sometimes it is so bad that I can't stand my panties or pants touching my stomach. Good grief! <_< This is embarrassing, but I have actually cut a pair of pants that I only wear during IC flares. :ph34r:

I suppose I'm just needing to vent.

Thanks for allowing!
-Julie :)
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Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

#53 loraleena

 
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Posted 26 February 2008 - 05:44 PM

I can relate. When I am flaring I drive with my pants undone!
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#54 scotty

 
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Posted 27 February 2008 - 09:22 AM

loraleena,
i tried to send a pm to you but your box is full!! let me know when you get an opening

thanks a bunch,
scotty
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only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended
*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)
*Winter '06 developed severely swelled legs with rashes, white tongue
*Self-diagnosed; Gluten Free Spring '07
*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)
*Celiac.com diagnosed IC Summer '07
*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

#55 Raleighgirl

 
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Posted 01 March 2008 - 11:28 AM

I just did a search on the internet and found this wonderful link. I'm so excited to see there are other people that can relate to what I'm going through!

I can't eat gluten, dairy, soy, and milk.

I had a colonoscopy and endoscopy that came up negative as well. But tests aren't always accurate. I know I have Celiac and IC. I have found huge amounts of help from this link. Interstitial Cystitis Association

All the lastest research on IC is on this website. You can also request a list of physicians in your area that can treat IC. So that might help you find a good doctor! I've been off of gluten for a year so my stomach feels a ton better, but my bladder is doing horrible. The Dr. says my IC is caused by the Celiac disease and that my bladder just takes longer to heal then my stomach? I'm pretty confused about the whole thing. I'm desperately searching for something to help my bladder. I've had a cystoscopy (I wouldn't recommend it. It's a horrible surgery that streches your bladder out). I've tried Detrol, Pyridium, and now I'm on hydroxyzine. Nothing is helping. I love reading everyone's posts because I can relate so much to y'all.

Any success stories with therapies tried for the bladder? I need some advice.

I'm definitely going to try the prelief y'all suggested. I'm about to go on the antibiotic leveaquin for an infection. I hope that won't make things worse.


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#56 Raleighgirl

 
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Posted 01 March 2008 - 11:42 AM

I just found this site while I was researching celiac disease & I feel like I have finally come home!
I have not been diagnosed with celiac or IC, but if I don't have it, I may as well. I hesitate to go to drs & get new diagnosis because I don't wnat to be loaded up eith meds or surgeries, etc if I can change it with diet. I am already intolerant to sugar, dairy & now I believe grains as well.
3 years ago, I had a hysterectomy . One year after that, I was on vacation & had to come home because my bladder pain became so bad. I went to urologists for a year & they found nothing, not even infection. They loaded me up with long term antibiotics & Pyrideum. The long term antibiotics only made me sick in other ways, so I stopped those. The pain pills were crucial to my survival tho. A year later, I finally got on estrogen. I new I needed it, but when they checked my hormone levels they were always "fine". I finally found a dr that just gave it to me anyway. Well, lo & behold, my bladder got better & better every month after that. It is now a year later & I still have to avoid coffee, tea, yogurt, tomatoes in large amts, whole grains (which I just recently found out), canned meats like tuna & salmon. I can't think of others just now. Tea & yogurt are the absolute worst. A whole grain english muffin recently sent me to urgent care facility. This got me checking into Celiac related problems. I am 3-4 days into the grain free diet. The last 2 days I have been weak & faint. The first 2 days I was very irritable. With all my food intolerances, I am having trouble finding foods to eat outside of meat & veggies. I also have a yeast problem that I have had for years. My family askes me what I am going to eat. Drs can never find anything. I am completely disgusted with that whole profession. They just want to stick me on nerve pills to cover all this up.
Anyway, maybe estrogen replacement may help some of you IC ladies as it did me. I can identify with every single one of your bladder complaints.
So glad I found this site!!!!!
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#57 Raleighgirl

 
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Posted 01 March 2008 - 11:49 AM

Hey Robin,

I'm not exactly how to use this site. I'm new as well. Even if your tests are negative for celiac you can still be gluten intolerant. All my tests came back negative but I eliminated gluten from my diet and I feel a lot better. I started eating more soy and nuts when I eliminated milk and wheat from my diet but those made me sick too. I find the safest foods for IC and Celiac are fruits that aren't too citrus, vegetables (except for tomatoes, onions, and peppers), and lean meats. I eat a lot of salads and those seem to work. Even dairy can flair up your bladder symptoms. Sunflower and pumkin seeds are a good snack. I hope this helps. Tests aren't always accurate. Good luck. It can be a difficult thing trying to solve the mystery of your health problems.


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#58 Raleighgirl

 
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Posted 01 March 2008 - 11:51 AM

As far as Soy (another thing I can't tolerate), it can really work on your thyroid, when I started eating it, I couldn't get out of bed for days.
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#59 Raleighgirl

 
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Posted 01 March 2008 - 12:15 PM

anyone else here have extreme thirst?
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#60 emilyjean

 
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Posted 05 October 2008 - 04:23 AM

It's so nice to know that you're not the only one in the world with celiac and Interstitial cystitis! I've been struggling for a long time with both illnesses and I'm finally really moving forward. After awhile I finally got my stomach and gut healed and back on tract, but my IC was horrible! The pain was unbearable. I am very strict at keeping both diets, but it's definitely very tiring. Anyone else struggling adhering to a gluten free and IC diet? I'll keep being strict because it is so worth it! My bladder is finally calming down and the pain is more bearable!
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Em




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