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!

Help! I've been gluten free for a year (except for when I accidently eat some). My bladder symptoms have only gotten worse, not better. I'm eating a very restricted diet. My intestines are doing well, I'm gaining weight, and my immune system is really strong, but I'm still having huge problems with my bladder. I have a severe case of IC. I'm always in bed in pain and I don't know what to do. This site has already been so helpful. If any of you have any more suggestions for my bladder please let me know. Thank you!

my Ic started last april. I also got very constipated at the time. I now deal with ic, chronic constipation, weight loss, perimenopausal, hair loss, cold hands and feet, tired all the time, always hungry after eating, and gas, bloating, yeast lots of yeast. I haven't had gluten for 4 months but none of these symptoms go away.

I have all the same issues. I found that there were other foods I needed to eliminate from my diet. I eliminated soy, nuts, and dairy from my diet and now I'm gaining weight, my bowels are normal, I don't have gas or bloating any more. Acidophylus and ground flax seeds have been really helpful. I'm still trying to get the IC under control but my stomach is improving and I no longer have cold hands and feet anymore. Maybe you have some other food allergies? or is it taking time for your stomach to heal? I was off gluten a year before I saw big improvements. Let me know if there is anything I can do to help. I know it can be so frustrating not knowing what to do.

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 i

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

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.

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.