Gluten-free For Interstitial Cystitis/urinary Frequency

[KevinG]

Hi everyone,

I started my gluten-free diet because a sibling had a positive celiac blood test. My blood test was negative, but I decided to try the gluten-free diet anyway because I have other symptoms (hypersensitive bladder) that I figured might be secretly caused by gluten. I have never had bothersome GI symptoms apart from some gas and a small feeling of numbness in my left flank.

I have been on a gluten-free diet for 3.5 weeks now, which has been pretty strict with the exception of one instance where I realized I have been ingesting gluten about once a week.

The results:

• Bladder symptoms have not gotten better
  
• My flank feels less numb, although I never paid that much attention to it
  
• My frequency of #2 has decreased from about twice daily to once every other day, although I do not feel this is necessarily better.
  
• I have been feeling strangely thirsty.
  

Here is what I am wondering now:

1. How long should I continue on the gluten-free diet? (Considering that I tested negative for celiac.)
   
2. Do I need to be as strict about going gluten-free as someone who tested positive for celiac disease?
   
3. How does eating gluten once affect the timeline of progress on the gluten-free diet? (i.e. do you start from scratch each time you get glutened?)
   

Thanks so much!

Kevin

[Ursa Major]

Hi Kevin, and welcome to this board. If you want to be sure whether you have celiac disease or not, the Enterolab tests would tell you. If you'd get the whole panel, you would also know if you have any of the genes they've identified so far.

I had an irritable bladder for many years. Going gluten-free didn't help (at least not with that particular problem), but limiting my salicylates did. If I drink a glass of orange juice (yes, I sometimes cheat), I will, within hours, get that awful burning sensation again. Of course, now that I know what caused it, and if I avoid salicylates (with which I am usually pretty thorough), it won't last more than a day.

As for having bowel movements less often, are you eating enough fruits and vegetables for fiber? Now that you're not getting fiber from all those grains, you need to get them from something else.

I suggest to keep on the gluten-free diet for another two weeks, and then do a challenge, to see if you actually react to gluten. Usually even the people who didn't react before going gluten-free, will after not consuming gluten for a while, if they truly are gluten intolerant (at least usually, there are exceptions).

Good for you for giving it a try, though, I wished my kids would do that.

[loraleena]

I have IC. What helped me was avoiding citrus. As soon as I avoided tomatoes and oranges I improved dramatically. If I dabble in them now, I start to get symptoms. I second the advice on enterolabs. It can take months and even up to a couple of years to feel better on gluten free diet, depending how much damage has been done.