Celiac And Interstitial Cystitis

[OptimisticMom42]

Hi Ladies,

A quick question. A friend Kayla (17 yr old girl) was dx'ed IC awhile back. She went gluten free right away. All the symptoms went away. It was to good to be true right? Well she gave herself a gluten challenge by eating two chicken McNuggets. The symptoms came right back, she took the meds her dr. had prescribed (Prosed and sulfamethoxazole, one dose each). She now has very painful bumps on the back of her tongue. She took claritin which didn't help the painful bumps at all. She just took some acidolpholous (she has had thrush in the past from antibiotic use). I don't know what else I should be looking for or suggesting.

Thanks for your help

RA

[OptimisticMom42]

Her symptoms are so different from mine that I'm totally lost on wether this is a gluten reaction, a yeast reaction to the antibiotic or an allergic reaction to something (meds, foods, campfire smoke?). So anyone out there with IC that experienced painful bumps on the back of the tongue?

[healthy09]

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 also have both IC and Celiac disease. I was taking Elmiron for about 6 months, until the manufacturer switched the coatings, making Elmiron NOT gluten free anymore. That was in mid-April 2009. It was during a refill that I finally figured it out. I called the manufacturer and they claimed they couldn't tell me what was in Elmiron, due to "proprietary information." (which is a bunch of crap!!!) Elmiron used to be gluten-free. Anyway, my IC symptoms went away, until September of this year. That's how long it took to undo the repair the Elmiron (when it was gluten-free) had done. Now the lining of my bladder is completely gone! I am in pain all the time. I can't leave the house for long, sometimes not at all. I'm quite depressed.

Help!!!!

-Beth

[stellar]

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!

[jbaker]

Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane

[IrishHeart]

Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane

Jane,

This post is very old and the original poster and responders to it may not see it. Try posting your questions as a NEW topic so someone can read it and maybe help you out.

IH

[MitziG]

Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane

Jane- I can empathize, as I am sure many others here can. I have both celiac and IC. For me, going off gluten and dairy had the biggest affect on relieving my IC symptoms, but it took several months before that relief came, so dont be discouraged if you aren't seeing results quickly. Now, I am totally gluten free because of the celiac, and I limit dairy to very small amounts. if I have even a glass of milk, it triggers a flare, but a little cheese or ice cream doesn't seem to affect me much. Everyone is different as to what foods will cause a flare however, and unfortunately, it is very much trial and error. I did want to let you know about a shake mix you might want to try. it is called Lame Advertisement. I use it, and it is gluten free and very filling. It is also packed full of vitamins and amino acids. I also take the Lame Advertisement supplement called Ionix Supreme. Tastes dreadful, but is an excellent source of all of your B vitamins and is easily absorbed- and you only have to take an oz a day, so it isnt too awful! I have found it to be a real help in restoring my energy and stabilizing my moods. The shakes do contain dairy, so depending on how sensitive your IC is to dairy, that could be an issue. The amount that is in there doesn't bother me at least. It is an expensive product, but I feel it is worth every penny. My two kids both have celiac as well, and I give them both the shakes and the Ionix Supreme as well. Another thing that helped me was drinking comfrey tea. This is a controversial area, but I did the research and felt confident drinking it in moderation. it would bring relief from a bad flare within a half hour usually. I hope you find relief soon! it took about 7-8 months of being completely gluten free and dairy free, but I can honestly say any IC discomfort I have now is VERY minimal- whereas before, it was so severe I was in the bathroom 50-60 times a day, had awful pain, wasn't sure if I could continue to live like that. Don't give up hope!

[MitziG]

Jane- I can empathize, as I am sure many others here can. I have both celiac and IC. For me, going off gluten and dairy had the biggest affect on relieving my IC symptoms, but it took several months before that relief came, so dont be discouraged if you aren't seeing results quickly. Now, I am totally gluten free because of the celiac, and I limit dairy to very small amounts. if I have even a glass of milk, it triggers a flare, but a little cheese or ice cream doesn't seem to affect me much. Everyone is different as to what foods will cause a flare however, and unfortunately, it is very much trial and error. I did want to let you know about a shake mix you might want to try. it is called Lame Advertisement. I use it, and it is gluten free and very filling. It is also packed full of vitamins and amino acids. I also take the Lame Advertisement supplement called Ionix Supreme. Tastes dreadful, but is an excellent source of all of your B vitamins and is easily absorbed- and you only have to take an oz a day, so it isnt too awful! I have found it to be a real help in restoring my energy and stabilizing my moods. The shakes do contain dairy, so depending on how sensitive your IC is to dairy, that could be an issue. The amount that is in there doesn't bother me at least. It is an expensive product, but I feel it is worth every penny. My two kids both have celiac as well, and I give them both the shakes and the Ionix Supreme as well. Another thing that helped me was drinking comfrey tea. This is a controversial area, but I did the research and felt confident drinking it in moderation. it would bring relief from a bad flare within a half hour usually. I hope you find relief soon! it took about 7-8 months of being completely gluten free and dairy free, but I can honestly say any IC discomfort I have now is VERY minimal- whereas before, it was so severe I was in the bathroom 50-60 times a day, had awful pain, wasn't sure if I could continue to live like that. Don't give up hope!

Hah! I see the product I recommended was edited to read "lame advertisement" Too funny. well, if you would like the name of the product, feel free to PM me and I will let you know!

[Just Dance]

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!

Hi, I am new on here but I have to say, you hit the nail on one of my personal topics. I have Celiac Disease and Interstitial Cystitis. I am going nuts. I have been Gluten-Free for 10 years and have suffered with my bladder for YEARS. I was misdiagnosed by a Uro/Gyne in Feb. of 2010 with Bladder Cancer. I took the advice of the women on the Bladder Cancer board and saw a Urologist for a second opinion. Before he tested me he said, "I don't think it is cancer. I don't expect to find anything, really." Well, that made me feel like he, too, thought it was all in my head! After ANOTHER Cystoscopy, he dx me with IC...Oct. 2010. I am just thanking God it was not Bladder Cancer. I feel for all of those with that dx. Since the IC dx, I can't find anything to eat. I eat rice and Bob's Red Mill Oatmeal. I feel like I am starving. My nutrients are none. My hair is falling out now. Doesn't it seem like 3/4 of your gluten-free diet is gone when IC is dx??? Please, what can YOU eat? I also have Thyroid issues, gall bladder was removed, can't eat MSGs, soy, tyramines, or processed foods, and I have TMJ. Any ideas...anyone?

~T

[cassP]

Hi, I am new on here but I have to say, you hit the nail on one of my personal topics. I have Celiac Disease and Interstitial Cystitis. I am going nuts. I have been Gluten-Free for 10 years and have suffered with my bladder for YEARS. I was misdiagnosed by a Uro/Gyne in Feb. of 2010 with Bladder Cancer. I took the advice of the women on the Bladder Cancer board and saw a Urologist for a second opinion. Before he tested me he said, "I don't think it is cancer. I don't expect to find anything, really." Well, that made me feel like he, too, thought it was all in my head! After ANOTHER Cystoscopy, he dx me with IC...Oct. 2010. I am just thanking God it was not Bladder Cancer. I feel for all of those with that dx. Since the IC dx, I can't find anything to eat. I eat rice and Bob's Red Mill Oatmeal. I feel like I am starving. My nutrients are none. My hair is falling out now. Doesn't it seem like 3/4 of your gluten-free diet is gone when IC is dx??? Please, what can YOU eat? I also have Thyroid issues, gall bladder was removed, can't eat MSGs, soy, tyramines, or processed foods, and I have TMJ. Any ideas...anyone?

~T

hi there- i am so new to the IC... dont even know if i have it- but highly suspect it... i too have Celiac and Thyroid disease- and IC seems to be common or related..

ive suspected IC before or a very very sensitive tiny bladder... but last fall i had my most recent UTI.. was pretty bad.. the Cipro worked immediately, but then afterwards- i kept feeling like i was getting another UTI- bacteria tests were negative... then i kept feeling like i was getting yeast infections (which i always get after antibiotics)- and kept treating and getting symptoms- all yeast tests were negative... now im repeatedly getting uti & yeast symptoms- and my bladder cant handle many things- especially blueberries of all things..???? strange...

anyways... im just learning, and hope i dont have it or have to avoid as much as you think you have to-

i was losing hair big time- i have Hashi & Graves- AND my iron was LOW.. have u had your iron & ferritin checked??? is your thyroid meds optimized???

i also found this the other day:

http://www.evenbetterhealth.com/interstitial-cystitis.php

i hope all these things help- i really cant afford to get more testing done, see more doctors... and really dont have the time or energy for additional problems and pain on top of the Celiac & Thyroid

[Judyin Philly]

I see this is very old thread and there maybe new information on the site

I was diagnosed with IC 2 months ago

3 days after that was dx with C-Diff so that's what I have been dealing with for 2 months now

Going to take some time reading all this great info but wanted to get on a list for alerts if people are posting on the subject

Judy

[Connie M]

On 2/9/2007 at 7:58 AM, icceliac said:

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

Hi Robin

I am 55 years old. I was diagnosed with Celiac Disease 19 years ago. I was diagnosed with IC 7 years ago. I am very sensitive and maintain a gluten free diet and an IC diet.

That includes drinking only water and milk. I drink nothing else. Therefore I still am very sensitive to gluten. I ate a bowl of Gluten Free Cheerios on March 23, 2019. I had severe belly pain and passed out three times. I fell off the toilet the second time I passed out and I have a broken nose and two raccoon eyes. It's been almost two weeks and I still am woozy and just brain fog. If you are Celiac I recommend not to eat the gluten-free Cheerios. 

I am in the process of getting to a Celiac Disease Center so they can help me with this. Mr Doctor thinks I have a rare form of severity Celiac and they cannot help me.

When my Celiac is flared then my IC is flared. It all works together in there. 

Good luck and praying for you my friend!

 

[DebbieT]

On 1/5/2006 at 8:17 AM, Guest mvaught said:

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 haven't really been diagnosed but figured it out myself.  My doctor not listening well.  I have been fighting bladder infections for 9 months which antibiotics did no good.  So  start food elimination 2 months ago.  I was not eating bread for about a month and when I did I was in so much pain it was unbelievable so needless to say I figured out I was gluten intolerant too.  I can't get tested because I now eat nothing with it in it. My emotions are all over the place trying to figure out what to eat.  I ate black olives yesterday which I found out was a big no no.

  My father quit walking at 65 and was put in nursing home at 75. I kept telling my Mom it was his food but didn't know all of his symptoms and I didn't know what all they were feeding him.  I am really thinking it's in the genes.  My son is showing signs of it and so is my nephew.  (Anyone else seeing a pattern?)

Anyway I am very new to all of this.  I appreciate having somewhere to go and recipes!!!