Celiac And Interstitial Cystitis

[loraleena]

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.

[imsohungry]

Hey you guys

I just gotta get this out of my system! ARHHHHHHHHHHHHHHHHHHHH

O.k...I feel better. 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.

I suppose I'm just needing to vent.

Thanks for allowing!

-Julie

[loraleena]

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

[scotty]

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

[Raleighgirl]

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.

[Raleighgirl]

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!!!!!

[Raleighgirl]

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.

[Raleighgirl]

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.

[Raleighgirl]

anyone else here have extreme thirst?

[emilyjean]

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!

[jacci]

HI, I'm Jacci...

Diagnosed with Interstitial Cystitis 1 year ago, Lyme's disease 4 months ago, Celiacs 1 month ago...yuck. I also have a whole host of other conditions, but that's for another day... I'm reading the posts to try to "catch up" since I'm new here.

If anyone has ideas for menu planning, I'd be grateful...my nutritionist just gives me resources that I have no time to follow up on, no real menu planning help.

Thanks!

[christie82]

Hi - i just found this while doing some IC research...i see no one has written since 10/08 so i am hoping i get some responses.

i was diagnosed with endometriosis may/07 and had a lap...BUT the pain really never completely subsided...i tried everything - so about a month ago i had my second lap and they found LOTS more endo and having the great gyno that i have suggested a urogyno come in and check my bladder - they found that i am a ICer.

i am really having a tough time!

i just recently got married in August and my poor husband and I can't ever have intercourse with me without me being in pain, and its been a month since the surgery - and i am so scared to even try - i don't want to disappoint him and hurt!

any suggestions to get me out of this funk would be helpful!

Christie

endometriosis, IC, possible celiac, tmj, facial nerve pain (they think), body ache, migrains...and ALWAYS ALWAYS exhausted!!!

[Judyin Philly]

HI

there is a group VP that deals with painful intercorse and the LOD seems to help them.

there is a whole foundation and a cookbook with LO recipes.

here is a link to a thread with tons of info

Most didn't have the painful intercorse issue but it did help with bladder issues.

https://www.celiac.com/gluten-free/index.ph...8564&st=390

Let me know if i can be of any other help.

Judy

[christie82]

Hi Judy - thanks for the response.

I started the Elimination Diet today - so lets see what happens.

My pain is so intense lately, over the counter medication doesn't work, do you recommend anything?

[christie82]

Hi - I just started the elimination diet today...so i am crossing my fingers that it works...

i am supposed to start the bladder cocktail this week again - has anyone tried it?

[Judyin Philly]

Hi Judy - thanks for the response.

I started the Elimination Diet today - so lets see what happens.

My pain is so intense lately, over the counter medication doesn't work, do you recommend anything?

Be careful that you don't start cutting all the High Oxalates foods at once becasue there is a 'dumping' process that goes with this. I'd start with useing only the middle Oxalate foods. Did you find the links on that site for the bladder issues as they might know more about the otc meds. i just use concentrated all pure natural cranberry capsules when i have a flair.

i'm sure there are more direct and helpful sites connected to the low oxalate site.

hang in there judy

[Judyin Philly]

Hi - I just started the elimination diet today...so i am crossing my fingers that it works...

i am supposed to start the bladder cocktail this week again - has anyone tried it?

i forgot to ask you about this.

I don't know anything about this.

Maybe someone on the other site will know about it or even someone on this thread here.

[GlutenFreeAl]

i forgot to ask you about this.

I don't know anything about this.

Maybe someone on the other site will know about it or even someone on this thread here.

I give myself bladder intillations regularly, and they are the ONLY thing that has helped my Interstitial Cystitis to any real degree. Avoiding things like tomatoes and chocolate certainly doesn't hurt, but the instillations actually make my bladder feel good!!

I use a cocktail of 20mL Lidocaine and 10,000 units Heparin. At first the catheterization hurt like HELL but as your bladder starts to feel better it stops hurting so much. I started off by getting them in the doctor's office, then they trained my husband to do them for me, then out of necessity when he was out of town I taught myself how to do it.

Have you had your first one yet? What solution did they use?

[whitball]

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!

I have had IC for many years. Put up with alot of pain, then learned about being a celiac. I was so mad, sad, just plain furious about having both problems and also having scar tissue that has adhered to my intestinal tract. It has taken a few years for me to get a grip and quit abusing my body in every possible way. so I do understand. A funny thing happened though. In June, I fell down my stairs and sustained a traumatic brain injury and broke my wrist. I now suffer from post concussive syndrome and had massive headaches. I was started on Topamax about six weeks ago. sounds crazy, but the headaches are gone, and the pelvic/bladder pain is gone also. I just hope it's not a fluke. my advice.....Keep your head up and keep trying different options. something will work. Good luck.

[christie82]

Hi - i have had two bladder instillations, i don't know the solutions off the top of my head ...but unf. i went to the doctor the other day and with my new insurance, i cannot possibly afford to get this done weekly. they wanted $600 for the preocedure - i said i couldn't do it anymore.

My plan is to stick to this diet, but its so hard. I cheated and had pizza and man i was sick. but i don't know if it was the dough, the red sauce or the cheese. i get my results from my celiac test on wednesday.

i DO KNOW certain foods bother me, i need to learn to just stop eating them. like it isn't like its just gluten or just dairy or acidic foods - it freaking feels like it is everything

my major problem know is the pain i am in, it feels like my utereus is being pulled out and there are like puppies or something trying to scratch there way out. i am at my desk about to cry.

currenly i am taking elmiron and prosed for the IC- i am on some others for my trigeminal neuorlgia (which they only think i have)

idk what to do at this point. i feel very stuck.

[christie82]

i didn't mention that the instillations did heart like hell.

no one mentioned me doing it at home?

[GlutenFreeAl]

i didn't mention that the instillations did heart like hell.

no one mentioned me doing it at home?

It may be worthwhile to ask your doctor about doing them yourself at home. I was only paying $40 each time I got one done, but I was also driving an hour and a half away to see the doctor (when gas was $4/gallon) - so it was adding up quickly. And it was difficult to get all of the time off of work to go weekly.

It was actually my doctor's idea to do them at home - I was very hesitant at first, because I knew I would just scream at my husband every time. But I swear to you, it does start to hurt less and now I do them myself and they barely hurt at all and I actually look forward to them because my bladder feels so good afterward!

My insurance covers a good deal of the supplies to do the instills at home. The meds are generic, so cheap, and the needles are cheap. My particular insurance does not cover the syringes or catheters, so I have to pay for those out of pocket. But it's still WAY cheaper than getting them done in the doctor's office. My doctor wrote the script as if I do them daily, so I get 30 doses of each med for each copay. I do them about every 5-6 days, though.

Sitting for extended periods of time is my biggest trigger - especially when I'm sitting in a moving car. That always triggers the worst pain for me, and I don't really know what to do about it. I'm sorry you're in pain at work - that's the worst. I don't have any sage advice, but I do feel your pain! Take your work pants off and put a warm heating pad on when you get home!

[christie82]

i am going to look into doing them at home, my poor husband - we just got married this past august and it has been nothing but one thing after the next with my health!!! i have noticed that a lot of people with celiac or IC comes with alot of other crap!

that is so funny - a heating pad is amazing -it is crazy how well it works. some nice lady here in the office just gave me the thing you stick right in the microwave....so nice!

i have noticed that muscle relaxers help when there is a bad flare up.

this diet is so hard! i just had a cookie, no will power what so ever!

[MedicalMystery]

Oh my goodness! You are NOT alone! I COMPLETELY understand what you're going through! I'm so glad I found this site too! I have experienced all this too in the last year-and-a-half!!! Took about 6 months to finally be diagnosed with IC, and then on top of all that, I started getting Endometriosis too!! (I've done a lot of research, and discovered that chances are, if you have IC, you also might have Endometriosis. They call them the "Evil Twins." 90% of females have IC, while only 10% of males have it.) And for the last 5 1/2 years, I've also had unexplained upper left abdominal pain, hence my username, MedicalMystery! The first time I experienced the SEVERE SEVERE SEVERE SEVERE left abdominal pain, right under my ribs and unfortunately, my bra line!, I was on my way out the door to go somewhere. All of a sudden, I felt like I was being stabbed by a sword multiple times, and it didn't come out, ever! I couldn't breathe! I felt like I was dying! I've been stuck with this pain for YEARS! I got really hot all over, felt like I was going to faint or throw up, seeing green from the pain and nausea. I quickly changed into shorts before I could faint, and stayed in bed the rest of the day, crying from the pain and trying to figure out what to do. Years later, as of right now, I'm still unofficially diagnosed, awaiting blood test results, and also experiencing IC and Endometriosis! To make a long story short (too late!), I've had multiple tests done, with no results! You name it, I had it: Bone scan, MRI, Cat Scan, MRI, Upper GI, x-ray, saw a muscuoskeletal doctor, water exercises, accupressure (which did help a little), medications, ultrasound treatments, etc. I'm so glad that I found other people who've experienced what I have, even though it has NOT been fun in the sun by any means. Like a lot of people, the help of 4 medications (3 specifically for IC, and one for Endom.), has helped immensely, including Trimethoprim, Vesicare, Elmiron, and Low-Ogestrel birth control. Trimethoprim helps keep infection/burning sensation away, Vesicare with frequency/urgency, and Elmiron helps repair the lining of the bladder. Of course, all of these medications take several weeks to show results. I'm also going to go gluten-free and do the IC diet, whether test results for Celiac are positive or not. Being best friends with water also helps a lot, clears out toxins, and despite the myth that you shouldn't drink more because you'll have to output more, please DO try to drink a lot of water. It's really helped me a lot!

[MedicalMystery]

Hi - i just found this while doing some IC research...i see no one has written since 10/08 so i am hoping i get some responses.

i was diagnosed with endometriosis may/07 and had a lap...BUT the pain really never completely subsided...i tried everything - so about a month ago i had my second lap and they found LOTS more endo and having the great gyno that i have suggested a urogyno come in and check my bladder - they found that i am a ICer.

i am really having a tough time!

i just recently got married in August and my poor husband and I can't ever have intercourse with me without me being in pain, and its been a month since the surgery - and i am so scared to even try - i don't want to disappoint him and hurt!

any suggestions to get me out of this funk would be helpful!

Christie

endometriosis, IC, possible celiac, tmj, facial nerve pain (they think), body ache, migrains...and ALWAYS ALWAYS exhausted!!!

Christie,

OM Goodness! Where were you when I was going through all of this too?! Glad I found you now! Like you, I also have IC, endometriosis, possible Celiac, and TMJ. I've done a lot of research on all these conditions. IC and endomet. are called the "Evil Twins," which means if you have one, chances are, you're bound to have the other two, which coincidentally, we both have! Are you currently taking any medications? I take 4 currently, three for IC, and Low-Ogestrel birth control pills for Endometriosis. I had a double surgery in December (which apparently is when you made this post!). My gynoc. burned away the mild endom. that I had, and my urologist extended my bladder. The first month, I was totally fine. I didn't have any pain, didn't have to go to the bathroom EVERY HOUR, etc. However, after I had my first period since the surgery, all of the symptoms came back! So discouraging! In March, I started taking birth control pills, which helped some, but was still experiencing pain, esp. more so during my period, and the bathroom issue was of course even worse too. In May, I talked to my gynoc. about simply not having a period anymore at all, until I wanted to start having kids. She fully supported my decision. I asked her if it would affect my ability to have children, and she said that my body would "remember," and that it would be fine. So now I'm period free! It REALLY has helped me, because endometriosis grows in the presence of estrogen, which increases in your body each time you have a period. It won't matter if you have multiple surgeries. They won't help if you keep having a period. Talk to your gynoc. and see what he or she says. Also, I'm currently in the process of waiting for test results for Celiac Disease. In the meantime, I've been drinking TONS of water, and I will also be gluten-free from now on! The medications that I take for IC alone are Elmiron (helps repair the lining of the bladder), Trimethoprim (keeps infection/burning pain away, and believe me, it does! For a week or so a few months ago, I went off of Trimethoprim to see if my pain symptoms had disappeared, and nope they had not! Had INTENSE burning sensation all weekend....felt like my insides were ON FIRE again!), and Vesicare (helps with frequency/urgency, and it definitely has. Don't have to get up to go to the bathroom in the middle of the night now! Can now go to the bathroom every 2-4 hours, instead of EVERY HOUR, unless I drink a lot of water. I'm pretty much pain-free too, except for occasional pain, and of course I still have pain in my upper left side! Hope this helps!