Monday, December 10, 2012

Ramblings on gluten, IC, etc.......

So I am reading a new book about Interstitial Cystitis.  It's "The Better Bladder Book" by Wendy Cohan, RN.  It presents a lot of theories on the causes (& thereby the treatment of) IC.  This book is recommended highly by the IC network.  When I was first diagnosed with IC I had gone looking for a book on treating it naturally & bought two books.  One on the IC diet & one on treating it naturally.  That book theorized that IC is caused by a toxic body.  This theory makes sense to me, but none of the treatment (detoxes, etc) got me any relief.  And then I noticed that this book is NOT recommended by the IC network.  So I'm not sure what to think about that anymore. 

Just a month or two ago I was doing more research online (I do this periodically, most of the time finding nothing new) & found two new theories on IC.  One was that a gluten allergy or intolerance can cause it.  The other was that a parasite, the Schistosoma parasite, can burrow into the bladder wall & cause it.

As I'm reading this book I see the gluten connection explained in detail.  It does mention that a gluten issue can go on undetected for a very long time.  And it does say that prolonged bed wetting as a child (which I definitely had) is usually a sign of a food allergy or intolerance.  The biggest part of the gluten connection is the fact that gluten very simply causes inflammation in our bodies.  And if that inflammation occurs in the bladder you can have IC.  During an IC flare the lining of the bladder is inflamed & irritated, so this does make sense.  It is becoming an accepted fact that inflammation in & of itself is the link to many health problems & that diet is the biggest factor of inflammation. 

My first thought is that I've NEVER in my life suspected a gluten issue for myself.  But at this point I'm desperate & willing to try just about anything (as long as it isn't HARMFUL) to see if I can live my life pain-free.  So as of last Tuesday I went gluten-free.  The interesting thing is that in 4 days I dropped 3 lbs.  I feel like I'm no longer bloated.  Prior to getting pregnant I had lost weight on the South Beach Diet & was weighing 128 lbs.  But as I look back at photos of that time period I have to admit I think I was a bit TOO thin.  So since having my son my goal weight has been 135 lbs.  But I just haven't been able to get there.  The absolute lowest I've been is 138 lbs, but most of the time I am 140.  I don't think I'm fat at 140, but I do always feel a tad bloated & I feel like if I could get down to 135 I wouldn't feel that way.  So I am now 137 & feeling good, feeling like I'm not bloated.  But I digress, none of this is about weight at all, I just thought that was interesting that I did nothing aside from giving up gluten & 3 lbs just magically disappeared.

This book I'm reading now says to give up gluten for 3-6 weeks & see if it's made a difference in your bladder symptoms.  BUT I know I was recently reading a book (The 4-A Epidemic) that stated gluten must be removed for a minimum of 3 months & then reintroduced to see if there are gluten issues.  Now the 4-A epidemic has NOTHING to do with the bladder or IC, I was reading it for health issues related to my son, but I still think I should probably follow the 3 month period to really see if there's a difference or not. 

Additionally, there is no question that I have gut issues.  All these antibiotics for my entire life has really taken it's toll on my gut.  And I know that I have increased gut permeability (a leaky gut) & systemic candida issues.  So I am wondering if my issue with gluten is simply that my gut permeability is not what it should be & gluten is leaking through & going where it shouldn't go & my body isn't liking that??  I am trying hard to heal the leaky gut, but it's near impossible when I have to keep on taking antibiotics.  It's like a vicious cycle that I just can't get out of.  If that's the case though, I have to wonder if I was able to heal my gut if I would then be able to tolerate gluten?  I would think so, but I see an awful lot of people online saying that they have to choose between gluten free or a typical IC diet FOREVER.  The IC diet eliminates a ton of stuff.  There are TONS of things that I can't eat or drink now because of this.  So what these people are saying is that once the bladder heals they can then eat EVERYTHING BUT gluten, or they can eat gluten & have to eliminate all the other bladder irritating stuff.  I do wonder if these people have leaky guts & if they do if they have tried to heal them?  I have always wished I could spend my life just doing all sorts of research on all sorts of things.  A lot of medical things, such as this.  I would love to send out surverys like this or interview everyone with IC & see what I find in regard to this sort of stuff.  I know that of all the people who say they have gluten issues & are gluten free only a small percentage actually have celiac sprue disease.  So I have to wonder if the others simply have leaky guts??

As for the parasite cause, it did seem plausible to me I have to admit.  And the parasite is usually carried & transmitted by snails & slugs.  I have to admit I kept snails as pets as a little girl.  And as a young adult we found we had slugs living in our drinking water & we aren't sure how long that was going on for before we discovered it.  So between those two situations I think that's a possibility.  BUT so far I'm not seeing much info on this link.  I don't know how credible this theory really is.  And I know if I ask my regular doctor she's just gonna think I'm nuts.  I will probably discuss it with the naturopathic doctor when I go there.  I know someone who had told me in the past he could get me any prescription med I want or need because of someone they know.  So I asked him for the first time about the med for getting rid of this parasite, but he said he wasn't able to get me that one. 

Another huge issue that definitely contributes (if not causes) is stress & tension.  When I get stressed or when I'm in pain my whole pelvic area tenses up & it's like a vicious cycle of tension.  So the pain can cause the tension, but then tension continues the pain.  Stress can also begin the tension & then the tension can cause pain.  As I reflect back on my life I have to admit that nursing school was a tremendous stressor in my life.  And marrying into a blended family has been an incredible source of stress for me.  My stepkids have never wanted to accept me no matter how hard I have tried.  And sure, I can just not care & be stress free, but then my poor hubby is caught in the middle of it all.  It's a complicated situation & no matter how hard I try I can't win & it is definitely taking a toll on my health.  I am trying hard to learn how to RELAX (having a toddler also makes it hard to relax) & I go to sleep at night listening to a guided relaxation recording.  When I was a kid growing up I always had a really hard time sleeping.  When I was about 12 or 13 my mother had guided relaxation tapes for some reason (she never listened to them) & I started using them & they REALLY helped me fall asleep.  I don't know where those tapes ended up, but I never knew what they were called so I never knew how to get more.  As I started googling & searching I found that they are called "guided relaxation or guided imagery". 

I guess that's all the rambling I have for now.........

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