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Celiac And Interstitial Cystitis


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#16 Guest_mvaught_*

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Posted 22 January 2006 - 03:07 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


Hi Charlene

You sound so much like me it is ridiculous. i insisted on going to an urologist - you should try (everyone also tried to blame the bladder problems on endo - which i really do have but the ic is also there). if you do see one - be sure it is one very very familiar with ic - many urologists are not familiar. my doctor luckily was great! you should totally try the diet and the drugs - but with the severity, the implant may really help you - it really helped me, changed my life (still have problems - but i can take a five minute carride without worrying about peeing my pants and sex is soo much better). i'm not sure where you live - i am in south florida - if you'd like the name of my doctor (he may be able to reccommend someone in your area). anyway, it is a drastic mesure for comfort, i know (and soo many people don't understand how bad it feels), but i have found it worth it and i would do it over and over again if i had to. anway, check it out - the company that makes the devide is called medtronics and they have their own website. (plus the IC network hasinfo on it)

i hope this helps!

-michelle
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#17 traveljunkie

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Posted 22 January 2006 - 03:56 PM

Hi Michelle,

Thanks for the reply! My dr will refer me to a urologist regarding my problems! :( After reading this thread, I've researched online, and found a lot of similarities with my symptoms. I'ts something worth investigating. I live in Canada, so it would be a no go to visit your doc, but thanks for the offer. :)

It's very encouraging hearing how much you've improved. I will test the diet theory out and I'll let you know if I notice any improvement. I know caffeine is a huge trigger for me. I literally could pee every 2 minutes after one cup of tea. A funny story...just today I went to a clients house to check on the construction being done and I HAD to go NOW, but there were no doors on all the bathrooms. I didn't care, and said no one come upstairs. I couldn't have held it if you paid me! UGH!! I want to get this figured out soon, and quit suffering this embarressing problem. Thanks for the listening! :)

Charlene
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#18 Guest_mvaught_*

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Posted 23 January 2006 - 02:54 PM

Hi Michelle,

Thanks for the reply! My dr will refer me to a urologist regarding my problems! :( After reading this thread, I've researched online, and found a lot of similarities with my symptoms. I'ts something worth investigating. I live in Canada, so it would be a no go to visit your doc, but thanks for the offer. :)

It's very encouraging hearing how much you've improved. I will test the diet theory out and I'll let you know if I notice any improvement. I know caffeine is a huge trigger for me. I literally could pee every 2 minutes after one cup of tea. A funny story...just today I went to a clients house to check on the construction being done and I HAD to go NOW, but there were no doors on all the bathrooms. I didn't care, and said no one come upstairs. I couldn't have held it if you paid me! UGH!! I want to get this figured out soon, and quit suffering this embarressing problem. Thanks for the listening! :)

Charlene


Hi Charlene - I totally understand embarassing pee stories. Car trips are the worst. One time we were on the Florida turnpike and the bathrooms were not working. I sisn't know what to do - i was so upset (they weren't even letting anyone in there to wash hands or anything) and i ended up having to pee in a gatorade bottle in the car. It was awful. Good thing that my husband it so supportive. Oh and also, I read something that said that being in planes actually makes it worse. I have noticed this (you don't want to be the one on the aisle if you are on the same row with me in a plane). Last spring, we had to make a connecting flight in DC, and because of the terrorist threat, no one is allowed to stand up for about 30 minutes flying in and out of dc - so the bathroom is totally out of the question - it was horrible (and of course holding it makes it even worse - if you can hold it at all of course). What a frustrating disease!

I can't have caffine either - I am the same way with it. Hey, you should also try the prelief - i'm not sure that it works for frequency very well, but that horrible urgency feeling which is very painful for me - it does seem to help. I'm glad that you are getting to go to a urologist. Make sure that when you are searching for one, you call ahead of time and find out if he or she is very familiar with IC - some urologists are still in the dark ages and think it is a fake disease or have never even heard of it. I hope that you don't run into this. Please, let us know how it goes. As I said, the implant has done wonders for me and even though i am not normal (people ask - well, if it didn't fix you all the way - then why do it - they just don't understand that improving is soooo much better than nothing at all) - it has helped so much (plus you get a remote control - lol). I guess the point is that you don't have to feel helpless (i remember that feeling very well) with this. Best of luck and keep posting =).

-Michelle
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#19 tnahowru

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Posted 03 May 2006 - 11:15 AM

Well just one (1) swallow of wine bothers me.

Fellow IC-G-Fers where can i find the list of foods that aggravate IC?

This is my theory: something i eat/drink affects my bladder (bladder is allergic?) immediately and it wants me to go and get rid of it, because it is always a small amount of urine (bladder is definitely not full).

are soy supplements for menopause bad also?

i would like to just wear a bag that urine automatically drips into so that i wouln't have to be getting up all the damn time.

tina



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



when you say "Aspirin" does that mean motrin/ibupropen also?

because i take them daily and don't notice any pain right after taking them.

tina


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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#20 Deej

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Posted 03 May 2006 - 03:53 PM

This is fascinating. I was diagnosed with IC just before finding out I am a Celiac. I went through bladder ablation (torture!) and it didn't help at all.

What did help was going gluten-free, avoiding all citrus, wine and restricting my coffee intake to one cup a day.

I suffered miseries with my bladder, much of it very very embarrassing and upsetting. Travelling was a nightmare. Meetings were a nightmare. It was so awful.

Thanks for bringing this thread back - I would have missed it otherwise.
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#21 Guest_adamssa_*

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Posted 30 July 2006 - 09:46 PM

Hi everyone,

This last winter, I definitely had IC symptoms and very, very, severe, much worse around my period. The same trouble with alcohol and pressure that you guys mentioned. Tina, I know exactly what you mean about having problems adding anything to your body at all. I was definitely in the bathroom every hour, and I had to basically hug my knees many nights to get to sleep, the pressure was always so bad. I went gluten free in March, and since then my IC has improved A LOT (but it's still there) and I can actually drink coffee again, which I love, but other than that I still stay away from all beverages that aren't water. So hopefully the longer we stay gluten free, the more our IC will clear up. I have never been officially diagnosed with celiac, (just a strong suspicion) but whether or I have it or not staying free of gluten has helped tremendously. I really do think that if you've got a gluten problem it just starts attacking many different areas of your body, one after another....

Sara
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#22 Lymetoo

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Posted 03 August 2006 - 07:09 PM

Yes, I have it. It basically ended my teaching career 12 yrs ago. It is much better now....I thought it got better because of Lyme treatment.... I blamed Lyme for causing the bladder problems.

It's not as bad now as in 1992 when I was dxd. Maybe it will be non-existent now that I"m gluten free!!!
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Negative biopsy for celiac 1980
Fibromyalgia 1980
IBS 1980
Interstitial Cystitis 1992
Systemic yeast
Diagnosed w/ Chronic Lyme Disease 2000
Diagnosed w/ Chronic babesia 2000
Tachycardia 2001
Asthma 2005
Have had Lyme and babesia for
about 48 yrs.

Began gluten-free July 19 '06
Native TEXAN living in Missouri

#23 jesscarmel

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Posted 06 August 2006 - 05:50 AM

Hi
I also experienced some bladder problems that got worse this year before being diagnosed with celiac. i had that bladder stretching procedure that made it wrose for a month but not its much better (knock on wood) they said i didnt have ic but had a "hypersensitive bladder." my symptoms were that i always had to pee and it burned hwen i peed but everytime i would get tested for a bladder infection there wasnt one...............so annoying like a permanent UTI
Jess
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Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac
years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

#24 jcc

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Posted 08 August 2006 - 01:48 PM

Hi~

I had urgency, frequency, occasional incontinence, stabbing pain, a feeling of swollen/ numbness... never an infection... my doctor thought I was a nutcase who just liked personal exams :P ~ but it turned out related to a B12 deficiency...so check that out! Or just take 1000mcg of B12 daily for several months, and see if it helps. I had many other symptoms with a B12 deficiency...but UT symptoms were one of the first to show.

On B12 deficiency

jcc
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#25 whitball

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Posted 02 September 2006 - 04:20 PM

I was diagnosed with IC in 2003. I have been miserable the last 4 weeks. My IC starts acting up when I am under stress. Of course stress is part of my daily life. I went to a walk-in clinic last week thinking that I had a kidney infection. Nope, must have been the IC. I'm miserable. It's hard to be a celiac and watch for IC stuff too. Of course, it does not help when I'm drinking alcohol either. Damned if I do and damned if I don't.
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Positive biopsy, positive blood test in 2/2006
Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)
Interstitial cystitis diagnosis 2004
Hysterectomy 2003
3 for c-sections, 2 laparoscopies to remove abdominal adhesions
Abnormal heart beat when tired or glutened

#26 gfp

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Posted 03 September 2006 - 02:15 AM

My mother had a history of cystites which eventually led to a hysterectomy and her being very ill.

In retrospect ... a gluten-free diet might have been the answer..
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#27 CatandCanary

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Posted 16 November 2006 - 03:29 PM

Hi,
I am new and this is my first post. I was diagnosed with CI and it seems to be much better now that I am gluten free. Everything is better now.

My parents were told I would out grow my allergy to wheat and milk and they could slowly give it to me. I have been so sick for so long just like all of you. I am hanging on to the chance that it was gluten the whole time. I have tried so many diets and cures with no results. Now I can think so much clearer and have started enjoying my life so much more.

Thank you, all of you, and I hope we all stop the suffering and pain of this awful Celiac stuff.
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I am 45 years old married with 6 children

1969 Chronic Asthma, food allergies- wheat, dairy
1970 Migraine Head Aches
1978 Grand Mall Seizures
1998 Fibromyalgia
2000 Irritable Bowel
2004 Hypothyroidism
2005 Interstitial Cystitis
Unwilling to eat gluten for Celiac test
Oct 1st 2006 Gluten free

#28 icceliac

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Posted 09 February 2007 - 04:58 AM

I am completely new with this so please bear with me. I technically haven't been diagnosed with anything, celiac or IC, but I'm pretty sure that I have both and it is incredibly frustrating. I also have trouble with red wine and such. But honestly, I feel like almost every food I eat either irritates my GI system or gives me urinary problems.

How did you guys finally get diagnosed.?I have seen 30 specialists in the past 4 years and been tested several times for celiacs, diabetes, endometriosis, .... basically anything the doctors can think of. Everything comes back negative. The only thing they discovered is that it takes my stomach a really long time to digest anything (like 3-4x the normal pace). I used to think I just got UTIs all the time and that the culture test must just be wrong since it kept coming back negative. Now I believe IC is a much better explanation.

I read through the postings that you guys wrote and have started myself on a complete elimination diet (for the IC) and bought some Prelief this morning. I don't know if I should also stop eating gluten because I have had 2 blood tests for celiac and 1 endoscopy and they all came back negative. I also don't what I will be able to eat if I avoid the 'bad foods' for both IC and celiacs. That basically leaves milk and vegetables :) The weird thing is that my doctor now gives me Cipro when I complain of my UTI-like symptoms and it does work a little. Do you find this to be true?
And how do you feel about soy? Peanuts tend to aggrevate my stomach so I switched to soy butter but now I think I shouldn't be eating this either?????

I'm very confused. I didn't have any of this stuff before 4 years ago and now I can't make it go away. Did your symptoms come on all of a sudden?? I should note that 4 years ago I was diagnosed with acute appendicitis and rushed to the hospital for to remove my appendix. That is when all this nonsense started.

Thanks guys. I'm excited to have found this site.

--robin

Thanks,
Robin
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#29 loraleena

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Posted 09 February 2007 - 08:48 AM

Hi,
I have IC and just had a recent flare after a actual UTI. My intitial bought started after being treated with cipro and it happened again this time. From what I have read antibiotics can ultimately make it worse because it affects the immune system and IC is autoimmune. Cipro is extremely dangerous and I stopped taking it after 1 day this time when I started having muscle pain. I read a lot of testimonials reporting that cipro has crippled them and caused many serious issues. Do not take anibiotics is there is no infection, you are only hurting your immune system and setting yourself up for overgrowth of yeast. Celiac or even yeast overgrowth could explain digestive isses. Or it could be both. Some even feel that yeast overgrowth can cause IC and food intolerances. I don't have diagnosed celiac, but have gluten intolerance diagnosed through stool tests through Enterolabs. You could try that route. Good luck and e-mail me if you want to talk further.
On the IC diet I eat chicken, fish, turkey, eggs, rice, corn, most veggies and pears. I can tolerate mozzerella, montery jack, feta and vanilla icecream. I take prelief with meals.
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#30 emilyjean

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Posted 16 February 2007 - 10:05 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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Em


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