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calm

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Posts: 113
Reply with quote  #1 
Hi all
I have recently been researching the impact of oxalates on IC.
I don't respond to IC diets, ie just have constant pain despite avoiding known IC trigger foods and drinks. I came across info on the ICN forums about oxalates and in particular a website set up by an IC patient who recovered using a low oxalate diet. (www.ic-oxalates.com) Looking at the website horrified me as the list of foods to avoid was massive! Plus she suggests you stay on the diet forever!
I recovered completely from IC and had a four year remission through acupuncture,and did not follow any particular diet. This time round am following an anti inflammatory diet and using supplements,as acupuncture did not solve things. I just wondered what others thinkof the low oxalate diet, it seems there is some debate about what foods are to be avoided. Also I understand you would need a urine test to check levels, blue horizons do it for £114. I am really not sure what I think about it all be really intetested in others views/ experiences.
Thanks very much
Susan

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Susan
Icy

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Posts: 428
Reply with quote  #2 
Hello Susan,

Interested to hear that you mention oxalates as this is something I am also interested in. I have not done a low oxalate diet but wondered if it would help IC bladder.  I did briefly look at oxalates and saw that so many of the most healthy foods (including many vegetables) were high in oxalates. To cut out so much food must surely have a detrimental effect on vitamin and minerals which are so important for the body.

What I discovered some time back which worried me sick was that so many antibiotics knock out the gut flora that break down oxalates.  These good gut flora are called
    Oxilobacter formigenes.

Apparently they are very, very fragile and particularly the fluroquinolone antibiotics like ciprofloxacin, levaquin, ofloxacin etc. will completely annihilate this species of gut flora. They do not reformulate at all well.  

So if you have had any of these fluroquinolones (even a short course.... and I had 6 weeks of the stuff which nearly killed me and caused me long term side effects),  so if you have had these antibitoics then sure chances are that your oxilobacter formigenes have been devastated so you cannot break down oxalates.

I'd also be glad to hear of any one else's experience of low oxalate diet. I don't know whether to try this but really worried about the whole list of foods and that oxalates are in most things.

Icy

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Posts: 428
Reply with quote  #3 
I found this site that mentions IC and oxalates.

http://alwayswellwithin.com/2010/04/27/high-oxalate-foods-can-trigger-pain-and-inflammation/
calm

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Posts: 113
Reply with quote  #4 
Hi Icy
Thanks for your post. Like you I am very concerned about missing out healthy veg from my diet. The list of things to avoid seems very long and worried that would have very little left to eat!
Yes it is interesting and also scarey about the role of antibiotics with this. As you probably know from my previous posts, my IC started after a short course of cipro in 2006. I am really not sure about the oxalate diet as seems so extreme but then if it helps, be well worth it.
I am currently trying cystoprotek along with other supplements to help my bladder heal. I am also pursuing hormone treatment as my IC returned due to menopause ( I think!)
I am thinking I may wait a while before pursuing the oxalate test/ diet whilst trying these other approaches. It can be very confusing if try too much at once.
Can I ask whether you take supplements and which ones? I did try and pm you a while back about dealing with digestion problems etc but not sure if my email reached you, as seem to have had difficulties getting emails through to members via forum. If you want to email me my address is smallaker@yahoo.co.uk
Thanks very much
Susan

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Susan
calm

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Posts: 113
Reply with quote  #5 
Just a bit more re oxalates. They are companies that will do a urine test to check levels of oxalates, not sure if allowed to mention names of companies on here, so if anyone wants details do email me as spoken to one this week. I am going to definately do the test as the more I research it does seem possible that oxaltes are an issue for me, and have always wondered why the ic diet makes no difference. I was using calcuim citrate as one of my supplements but imagine would need to stop this to get accurate reading on test. Calcuim
Citrate is often used to help with oxalates. Will keep people posted on what happens for me. Don't welcome idea of doing the diet but 2 week trail plus test should tell me if worth it. I have found out there is a yahoo group for people of LOD so have joined that whilst researching this further. Happy to chat to anyone about if they are interested to hear more
Susan

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Susan
Icy

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Posts: 428
Reply with quote  #6 
Hi Calm, (Susan),

I don't take many supplements as people with IC bladder cannot really tolerate a lot of supplements. I sometimes take a hydrochloric acid tablet to help with digestion at mealtimes. It seems that if you have candida you can be short in hydrochloric acid and people who have been subjected to lots of antibiotics will have candida overgrowth/fungal overgrowth.  I find Vitamin C flares the bladder somewhat. Also probiotics can be hard for people with IC bladder.

I haven't found an antibiotic anywhere that includes oxilobacter formigenes but I do believe that an awful lot of damage is done by fluroquinolones on the oxilobacter populations in the gut.

The low oxalate diet seems a bit of a nightmare, especially when couples with IC diet, anti-candida diet, gluten free and dairy free diet.  It is so easy to become nutrient deficient with all these diets.
You need a lot of Vitamin C to make glutathione which is the body's biggest detoxifer but taking Vit C is very hard on the bladder.

When you say there are companies that check oxalates in the urine - how do they actually do that as I read somewhere that you cannot check oxalates in the urine easily , as the urine has so many situations where the urine is different each time, dependent on amount drunk, what you have eaten or breathed in, how well the kidney is filtering etc.
calm

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Posts: 113
Reply with quote  #7 
Hi Icy
The urine test for oxalates is a 24 hour test, so you collect urine over the whole 24 hour period, I guess that way they can get info about levels throughout a day. I do feel supplements can help people with IC guess it's just getting the right ones, everyone is different. Diana Brady has written a good book about supplements, it's called IC naturally.
Best wishes
Susan

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Susan
calm

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Posts: 113
Reply with quote  #8 
Hi all
just to let you know that my oxalate test results have come back as very high!
I  have posted about this on the ic forum but thought be good to update  this thread.
I am now embarking on a low oxalate diet, which is complex but seems well worth it considering the link between high oxalates and IC.There is a really good website for further info devised by an IC patient who has got much better using a low oxalate diet    http://www.ic-oxalates.com
I am slowly getting my headround what I need to do diet and supplement wise, but am very determined to try it as my levels are very,very high! This is probably why no IC diet has ever helped me, and also why the anti inflammmatory diet my nutritionist put me on was not helping.In fact I was eating lots of high oxalate foods inc spinach,sweet potato,nuts,seeds,dates etc etc So after 6 months of following the deit reccomended to me I now realise that was totally wrong advice!
obviously not everyone will benefit from LOD, really depends on your own level of oxalates.But would highly reccomend to anyone not having sucees from normal IC diets or anti-inflammatory diets to look into oxalate issue.I paid for my test privately, or rather my boyfriend did!(As I am very broke having been offsick with the IC for 6 months) I feel however we should not have to pay for this privately and all IC patientsshould routinely be tested for it.I am seeing a new gp next week and will insist that my retest is done via nhs!
I am also balancing my hormones alonside this diet as feel hormones play a part too for me, in fact was shocked to realise it wasn't just hormones.If I hadn't had the test done I would have never known about the high level.
 feel free to email me anyone who wishes to know more about my experience
best wishes
Susan

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Susan
Davidsmum

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Posts: 561
Reply with quote  #9 
Hello Calm,

I have emailed you off board as I am very interested in Oxalate problems in IC and this is a very interesting website link.  Hope you got this message.
Thanks.
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