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Celiac And Interstitial Cystitis


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#31 emilyjean

 
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Posted 16 February 2007 - 10:08 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 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.
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Em

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#32 Susan123

 
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Posted 23 February 2007 - 09:24 AM

I have been diagnosed with Interstitial Cystitis and Gluten Intolerance. Both diagnosed for the first time in my early 30's. If I only knew in my earlier years how lucky I was to be able to eat what I wanted!! Oh well health comes first :-)
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#33 Guest_adamssa_*

 
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Posted 25 February 2007 - 12:49 PM

Hey You Guys!
I have Interstitial Cystis symptoms, they've been a problem for me for awhile. And it's bad. I used to think it was a separate issue. BUT, now I'm finding out that it stems from my adrenal problems. I am posting an excellent link about adrenal exhaustion, and I really think you should please take the time to read it, and get down to the part where it talks about frequent urination. I've found I can alleviate mine with saltwater.

Especially anyone who also has thyroid, hypoglycemia, and food allergies need to read this, because the adrenal glands are often the main culprit. I have all of the above and I think that's where it comes from.

With adrenal fatigue, fatigue is of course what you hear about the most. BUT, I had other symptoms of it long before I felt exhausted. Also, you don't want to have to restrict your diet even more then we already. No gluten is fine for me if that's all it is, but then no gluten, no coffee, no chocolate, it's gets more difficult.

Please read it!

Sara

http://tuberose.com/...nal_Glands.html
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#34 tabasco32

 
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Posted 27 February 2007 - 05:26 PM

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. :(




Hey You Guys!
I have Interstitial Cystis symptoms, they've been a problem for me for awhile. And it's bad. I used to think it was a separate issue. BUT, now I'm finding out that it stems from my adrenal problems. I am posting an excellent link about adrenal exhaustion, and I really think you should please take the time to read it, and get down to the part where it talks about frequent urination. I've found I can alleviate mine with saltwater.

Especially anyone who also has thyroid, hypoglycemia, and food allergies need to read this, because the adrenal glands are often the main culprit. I have all of the above and I think that's where it comes from.

With adrenal fatigue, fatigue is of course what you hear about the most. BUT, I had other symptoms of it long before I felt exhausted. Also, you don't want to have to restrict your diet even more then we already. No gluten is fine for me if that's all it is, but then no gluten, no coffee, no chocolate, it's gets more difficult.

Please read it!

Sara

http://tuberose.com/...nal_Glands.html


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#35 emilyjean

 
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Posted 20 March 2007 - 11:13 AM

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.
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Em

#36 ICWendy

 
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Posted 24 March 2007 - 09:28 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!

gluten-free intolerance/IC link?
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#37 ICWendy

 
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Posted 24 March 2007 - 09:44 AM

Hello to everyone on the site, especially those who are struggling with both IC and gluten intolerance. For those of you who don't know what IC is, in short it is "Interstitial Cystitis", a chronic inflammatory process in the bladder lining that is not caused by infection, and it causes symptoms such as pain, frequency, urgency, and sometimes hesitation, or trouble getting a stream of urine started. Many, many people with IC find their symptoms get worse from certain foods, even though there are doctors out there who say that diet does not effect IC. I have had IC fo 10+ years, and have known I had gluten intolerance for 4+ years, but only made the connection when I realized that any gluten, even in tiny amounts, effected all my mucosa. At various times I have had a mouth full of canker sores, ulcers on my tongue, tiny ulcerations and soreness inside my eyelids, and my urologist saw the ulcerations in my bladder during a cystoscopy. When I began following a very strick g.f. diet, all of these issues diminished or resolved. By the way, I initially made the connection to wheat allergy/gluten intolerance due to a persistent skin rash, not the GI symptoms like gas, bloating and diarrhea that are more typical. It was only after a year of eating gluten free when I experimentally reintroduced gluten that my gut reacted. To make a long story short, now others are finding there is a connection between IC and gluten intolerance, or between gluten intolerance and an auto-immune response that for us, seems to focus on the bladder. Here are some things I have done that have truly helped:
-a course of long-term antibiotics that were prescribed after I sent a urine sample in for a "broth culture", which is more sensitive at detecting certain type of infections (most doctors don't do it, but United Medical Labs or Fairfax Medical Labs might still do them)
-stay strictly on a diet free of gluten, dairy, sugar, alcohol, and caffeine (most other food sensitivities fell away if I kept up with these.
-built up my immune system by taking a supplement called "Garden of Life Goatein IG", which is a predigested goat milk protein with goat colostrum, which contains secretory immune globulin, expensive, but worth it.
-a type of body-work called "Integrated Manual Therapy", an off-shoot of physical therapy/cranio-sacral therapy
-a similar/related type of body-work called "Myo-fascial release", which helped loosen areas of scar tissue and endometriosis, as well as relieving pain and inflammation.

After being out of work for several years due to poor sleep and chronic pain (I'm a nurse), I am now working again, and although I still have some issues, I no longer feel like a chonically ill person, unless I go off my diet.

Hang in there,

Wendy
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#38 mganstin

 
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Posted 26 March 2007 - 08:58 AM

Hello all,
I was diagnosed with Interstitial Cystitis 2 weeks ago and Celiac Disease the day after. I'm overwhelmed and frustrated just like most of you that are newly diagnosed and I'm struggling to find a diet plan as well. Thankfully there ARE still some safe foods are ok for both diets and I'm searching online everyday trying to find as many as I can. Now, so far, I've been sticking primarily with the gluten-free diet because I feel that gluten does more damage to your body than acidic (IC- unfriendly) foods. While acidic foods DO hurt the bladder and have a tendency to be really painful, gluten can be like a poison to some of us. One thing that I have noticed so far on this gluten-free diet is that my bladder symptoms have begun to dissipate. This leads me to believe that celiac disease and IC are very much related. I have had IC symptoms for a year now and this is the first time that my bladder is actually starting to feel better and I truly believe it is because I have gone gluten-free, even for only 2 weeks. I should add that I have also been taking Prelief for 4 weeks and I have no doubt that it has been helping me as well. I'm hoping that as my intestines begin to heal from my 21 years of damage by doing this diet, I will be able to absorb acidic foods better. I know that this is just a theory but I'm going keep going gluten-free and see what happens. So for those of you newly diagnosed and feel that you need to go full on the IC diet as well as the gluten-free diet, maybe going primarily gluten-free, with the addition of Prelief, will work for you. But depending on the severity of your IC or Celiac, this may or may not work, but I would think it is certainly worth a shot. I am still going to stay away from the big no-no's for IC such as pinneaple, coffee, and tomatoes, but I'm definately not eliminating everything considered "unfriendly" for IC just yet. I'm going to give this a real shot, though, and I'll let you all know how it turns out soon. If anyone has tried this with or without success please let me know. My goal is give hope to Celiacs and ICers that feel they have no good food options left. It may not be as bad as you think ;).

Meghan


IC, Celiac, GERD, IBS, Endometriosis, TMJ, Fibromyalgia, PFD, RLS
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#39 emilyjean

 
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Posted 08 April 2007 - 07:13 AM

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!
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#40 ElenaDragon

 
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Posted 17 July 2007 - 01:54 PM

This is a very interesting thread. I was diagnosed with IC a year ago, and not long after I was diagnosed with IBS. However, recently my intestinal symptoms have been getting worse and I am getting tested for celiac. It would be interesting to discover if there is a connection between the two. The cause of IC is unknown, but some suspect it may be autoimmune. My IC symptoms began after a series of UTIs (treated with antibiotics). It seemed that the last UTI had returned, but the culture came back negative and the symptoms remained. I just started the gluten free diet today, and I will definitely be watching my bladder symptoms to see if they improve!

For those of you who are struggling with IC, my symptoms are pretty much under control now due to three things: diet, Prelief, and Elmiron. In the beginning I had to be very restrictive with my diet and couldn't eat anything even remotely acidic. However, my doctor prescribed Elmiron, which is a prescription drug used to treat IC, and now I only have to avoid the most acidic foods. Prelief helps with these foods, and I can even eat some fairly acidic foods when I take Prelief, as long as I don't go overboard.

I pretty much had to diagnose myself with IC. I first saw two urologists - the first said I had urethritis, and gave me some pills that just treated the symptoms, expecting them to go away. The symptoms didn't go away, so I saw another urologist in the same practice. She said I had a narrow urethra, and wanted to perform a procedure to stretch it. I didn't want to do this without first learning more about it, so she prescribed me Elavil, which was meant to treat the pain (and it did help some). After that I did a bunch of research and read about IC. It seemed to fit and sounded a lot like what I was going through. I found a urologist in my area who specialized in IC and made an appointment, with a two month wait. The wait was worth it. He did a short exam and spent quite a bit of time talking with me about my symptoms and then diagnosed me with IC. He gave me Elmiron and I was on my way to feeling better! I encourage everyone to be proactive in your treatment - IC is not well known enough yet, and you may need to do some work on your own.
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#41 whitball

 
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Posted 17 July 2007 - 02:14 PM

I also have IC. My doctor was unable to find ulcerations on my bladder, but has diagnosed me with IC. Not everyone has the bladder ulcerations. Orange juice, anything with Cranberries, tomatoes, wine and stress all cause significant pain for me. I am being treated with Elavil at bedtime to help with the throbbing pain that I have when I have a flare-up. It is a very low dose and really seems to help. Today, I am home because of being glutened and because of bladder pain. I don't know if you guys have the same problem. When I am glutened, I also have bladder pain.
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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

#42 radgirl

 
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Posted 17 July 2007 - 03:15 PM

Yep, I was Dx with IC in May 2006. If any of you are Splenda eaters, stay away from it. In some of the research I've done, Splenda is can really irritate the bladder. I guess IC is just another piece of the puzzle with this issue. I'm still playing chicken and the egg and probably always will as other medical issues arise.
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#43 ElenaDragon

 
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Posted 17 July 2007 - 04:24 PM

Splenda can irritate the digestive tract too. Stevia is a great alternative to Splenda. It is an extract from a naturally sweet herb. You can find it in the supplement section of health food stores.
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#44 SafeSpuds

 
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Posted 25 August 2007 - 08:52 AM

My 2yo daughter was diagnosed with Celiac at the beginning of July this year and has now just been diagnosed with IC. I'm going to modify her diet even more and try the prelief. Any other ideas to help my 2yo cope with all of this? Any tricks that help alleviate the pain and discomfort?
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#45 ElenaDragon

 
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Posted 25 August 2007 - 05:35 PM

My 2yo daughter was diagnosed with Celiac at the beginning of July this year and has now just been diagnosed with IC. I'm going to modify her diet even more and try the prelief. Any other ideas to help my 2yo cope with all of this? Any tricks that help alleviate the pain and discomfort?


My IC medication (Elmiron) has been the biggest help for my pain, but I'm not sure if it is safe for children. You may want to look into freeze dried aloe vera - some people with IC have had success with it, and it is a more natural approach to treating the bladder walls. Aloe vera juice and gel (the edible kind) can work too, but make sure not to get any with added acid (many do, and it can really irritate the bladder) and make sure that the laxative part of the plant has been removed. I tried aloe vera juice, and hated the taste. If Elmiron hadn't helped, I was going to try Desert Harvest freeze dried aloe vera capsules next... it has been tested with IC patients and shown to help. Google "Desert Harvest" to find more about it.

Make sure that your daughter is drinking enough water. If something does irritate her bladder, plenty of water can help flush out the irritants. She will have to pee more, but water is important. Also, I have read that when in pain, Tums (which is not gluten free I think) or baking soda mixed in water can help. Some people also claim that Almond Breeze almond milk helps them. :)
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