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Interstitual Cystitus
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My brother has an ongoing issue with Interstitual Cystitus. I'm not too familiar with this. And, I was hoping that I could find someone who is knowledgeable.

Can it be associated with Celaic?

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Yes it can.

I had Interstitial Cystitis since age 20 and I was on antibiotics all the time for it.

This is one of the things that miraculously cleared up for me when I went gluten free. I had no idea this would resolve simply by eliminating gluten.

So I searched the forum here by entering Interstitial Cystitis in the search bar and low and behold there are many, many posts about IC clearing up when people go gluten free. Bladder pain and spasm were my symptoms, but urinalysis was usually clear of bacteria. However, they prescribed antibiotics anyway, repeatedly. It didn't make sense. It does now. The cause of my IC was gluten. I haven't had an attack of IC since I went gluten free. I HAVE gotten IC symptoms after getting glutened however, but then it normally clears up when the gluten is out of my system.

Do a search here....you will be amazed.

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THANK YOU SO MUCH! I will pass that on. :)

And look further.

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Just one interesting thread I found on the subject. :)

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I was diagnosed with IC a few years ago, but I don't think it was accurate. After two rounds of antibiotics, everything got WAY worse. I have since noticed that my problem isn't simply gluten, it's all carbs/sugar...my symptoms are directly related to candida. If I eat a lot of carbs and/or sugar (even if completely gluten-free), I get the dreaded bladder spasm and the urgency/pain. Takes me forever to actually GO. As long as I adhere to my diet, I feel great. Of course, my diet drives me crazy sometimes, so I'm not always as strict as I need to be. Sometimes those dang potato chips or chips and salsa just get the best of me.

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Sure is! I have IC and Celiac too, the IC is largely controlled by a gluten free/ casein free diet. I have occasional flares still, but they are much milder than before and I do not need meds anymore.

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I had one urologist's nurse tell me that I have IC. The urologist didn't know whether I did or not (despite scoping my bladder), and tried me on overacting bladder meds, and Elmiron. Neither worked (my main symptom is just the feeling of having to go - whether I do or not), and he recommended an Interstim implant. I'm 32, and want nothing to do with such a thing, so I ran away as quickly as I could from him. No Dx and just throwing possible treatments at me? No thanks.

He blew off the fatigue I was experiencing. Thankfully, my GP is awesome, and tested for vitamin deficiencies as well as TTG IGa levels; with those results, I was referred to a GI doc and diagnosed with celiac.

Meantime, I saw a different GYN and Uro-GYN. Neither wanted to say I had IC. My mom does have IC.

I may have endometriosis, and instead of scoping me to find out, I got a Mirena IUD (since I don't want to be pregnant and that would be the first and best treatment option anyway).

So... having gotten the Mirena IUD and the Celiac Dx at about the same time, it's difficult to say whether the Mirena or the gluten-free diet is helping, but I have noticed the "frequency" (feeling of having to go - I don't actually go more than other people) slowly subsiding. Either way, I'm very happy for even a slow change. I'm not that satisfied with the Mirena, but I'm keeping it for now.

I'm also trying to get off of dairy - but I'm finding that way harder than gluten!!

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Thank you for all of this information. I have experienced chronic UTIs since childhood and was advised to stay away from fruit juices, bubble baths, soda, wear cotton underwear,  etc... These repeated infections cleared up from age 12-20 or so.  However, the infections started to reoccur again in my early twenties. These UTIs had become so painful I would have to literally sit in the bathroom for hours (urinating small amounts followed by pins and needles) until the pain would subside and I could get up without the intense pain and urgency.

Well I THOUGHT they were UTIs and would run to Urgent Care for meds until one day after my symptoms were not responding to the antibiotics, I called my primary physician. She told me the lab result came back from my urinalysis and there was no bacteria - I didn't have a UTI.  I have been to my Primary several times a year for the past few years and 90% of the time there is no bacteria present but I have the symptoms of a painful UTI. These flare ups continue to happen 3-4 times a year. I have been gluten-free since 2008 and got genetic testing in July 2011 (HLA-DQ2) but I still have these episodes and they are very disrupting and keep me home from work.  I am scheduled to see a urologist to get an accurate diagnosis. I appreciate all of the personal experiences shared here. It makes me feel validated. Thank you.

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    • Hello, I see you posted this a long while ago, and perhaps--I hope-- it's no longer a matter of concern, but I thought I'd mention that shortly before I was diagnosed for celiac's, I had distinct yellow blotches on the corners of my eyelids toward my nose. Some months after I had stopped eating gluten, the yellow gradually went away, and--as it just reappeared now several years later, I googled the issue again.  I am only speculating here, but I do believe it is related to liver problems, which, in turn, are related to celiac's. I don't think liver function tests cover all aspects of liver health. I say this because when I was pregnant I developed a temporary liver condition called interhepatic colestasis of pregnancy (ICP), but my liver function tests had been fine. (The condition is diagnosed based on bile levels in the blood, not on liver function). I discovered upon some research that (of course!) ICP  can be associated with celiac's disease.  My hunch is this-- that celiac's presents two problems to the liver: 1) the malabsorption of nutrients--esp. Vit. K2-- that are vital liver health; 2) since gluten registers as a toxin to the immune system (I think?), perhaps the liver gets overloaded processing so much toxic material. Or perhaps there's some other reason. At any rate, poor liver health and celiac's do seem to be linked, according to a few articles I've found. Anyway, hope your problems are resolved now.  
    • my daughter did stool test from enterolab but this gluten sensitive blood test is from http://requestatest.com/tests/search    
    • OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
    • NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is a greater chance you are celiac or "early stages" especially in light of your symptoms. All 3 of those factors weighed together was what I was referring to.
    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
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