low oxalate diet question

[ginaaa22]

I have seen some of you post regarding your low oxalate diets. Can someone explain this? Does anyone know of any good site with information regarding this? For my vulvodynia I have tried creams, meds and PT. Nothing has helped.

What do people for hormonal vulvodynia flares doing? My vulvodynia symptoms act up on when I'm supposed to be on my period (I have an IUD so I don't bleed anymore, if any its minimal. Mostly just discharge) During this time I will get raw, itchy, inflammed and extremely painful. If I have sex it gets 100 times worse. It also flares after sex. Have other types of birth control methods help? I have tried apri, yaz, nuvaring, ortho try cyclin low, depo provera. When I don't take birth control I wont have a period for 6 months and then when I do it is horrible. I cant get out of bed and I bleed an extreme amount and I get anemic. Also, since the onset of my IC and vulvodynia symptoms I have had adult acne. During puberty I never had acne at all, I didnt even have to wash my face. Now I use benzol peroxide 8% wash and it doesn't even help. I can't take antibiotics for it because of my yeast infection problems.

[amandac]

there is a site that has a low oxalate diet and recipe ideas...its a vulvodynia treatment site with supplements too. If you google vulvodynia you might be able to find it...you'll know when you do, it was easy for me to find it.

But I know things like popcorn, spinach, and things are not allowed on that diet

[sailawaygrl]

Is your acne mostly along your jawline and lower cheeks. Possibly cystic acne that is painful?

[VCNJ84]

I am sure the diet works for some, but it did nothing for me.

[cmclien]

Also, since the onset of my IC and vulvodynia symptoms I have had adult acne. During puberty I never had acne at all, I didnt even have to wash my face. Now I use benzol peroxide 8% wash and it doesn't even help. I can't take antibiotics for it because of my yeast infection problems.

Hi Gina,
My son gets a prescription called benzaclin which is a topical cream of clindamycin and benzoyl peroxide. It is topical so it shouldn't effect any yeast issues. Nothing helped him before that, now he has NO acne and he only uses it once a day. Before that he was on oral antibiotics for acne but he developed a resistance to them and they quit working after about a year. Luckily they now make a generic too so its only about 10 dollars with our insurance.

I also meant to ask you if you have had your hormone levels checked to see if there is something you need or are missing or have too much of etc since you only have your period every 6 months when you don't have an IUD.

[ginaaa22]

Hi Gina,
My son gets a prescription called benzaclin which is a topical cream of clindamycin and benzoyl peroxide. It is topical so it shouldn't effect any yeast issues. Nothing helped him before that, now he has NO acne and he only uses it once a day. Before that he was on oral antibiotics for acne but he developed a resistance to them and they quit working after about a year. Luckily they now make a generic too so its only about 10 dollars with our insurance.

I also meant to ask you if you have had your hormone levels checked to see if there is something you need or are missing or have too much of etc since you only have your period every 6 months when you don't have an IUD.

I have a prescription for both (face soap w/ benzo 10% and the clyndamyacin) and neither of them help. I think my acne is bad because of stress... I have had hormones lvl's checked before but not in a long time. I think most gyn are used to people having these problems so they dont look into them. I just schedualed an apt with a uro-gyn who specializes in IC and homeopathic medicine and a reproductive endo so hopefully they can figure it out. My IC and vulvo is DEF linked to my hormone changes..

[ginaaa22]

Is your acne mostly along your jawline and lower cheeks. Possibly cystic acne that is painful?

It is on my chin and on my forehead. Not on my cheeks at all. I dont even have oily skin. I use my face soap w/ 10% benzol peroxide 2x a day and it has done nothing.

[andreamarie]

Retina micro was magic for me. I had severe acne till my twenties and then it reappeared at menopause. I got Retina micro and all of a sudden I had great skin. I kept using it for wrinkles and it works.

Your ins only covers it until age twenty two but if you get a letter from your doc saying it's only being used for acne you might get coverage. I did at sixty (that's a record.) Even if you can't get coverage a tube lasts me a yr.

After having bad skin all my life people started telling me I had good skin. At first I thought they were making fun of me.

[ginaaa22]

thanks. Do you get that from a dermatologist or is it OTC? I am only 20 so I got a couple years before I gotta worry about that but thanks for the info. Hopefully by then I wont have acne anymore..I never used to.

[ezerfas]

Oxalates

I have cross referenced and compiled a useful list of commonly eaten low ox foods including latest research from the VP Foundation. Would be happy to mail anyone a copy. It is several pages long and I have it also saved as a spreadsheet in MS Word. Foods are alphabetized in categories. Not every food ever tested is listed but it's a good reference.

People often have both vulvodynia and IC and the treatments overlap but are NOT the same. However, people with both seem to do better on a low ox diet.

To add to the confusion, you think you are taking your calcium citrate in the right dosage and avoiding high oxalate foods and wham, you're in the middle of a 3 day - or worse - flare. Some supplements (like grape seed) that you thought harmless are actually the culprit. Then there is the B6 issue. Needed to control oxalates but thought to cause IC pain.

Besides a low ox diet, I am taking :
1200 mg of calcium citrate without Vit D
Quercitin
Cetyl Myristoleate (recently recommended by Dr Clive Solomon's of VPF. )
Tylenol for pain (Advil makes it worse)
Keeping a log is helping me see patterns and causes but it is not always clear.

[ginaaa22]

you can email it to me @ [email protected] (the ms word doc) thanks

[JennyBird]

Hi Gina,
The vulvar pain foundation (I saw the link to their site on an earlier response)has a cookbook (volume 2) out with an extensive list of low/medium, and high oxalate foods. The low-oxalate diet really helps me. I was first on only the IC-diet, and couldn't figure out why I was still having problems after eating IC-friendly meals. Once I eliminated the high-oxalates, I felt much better.

My big triggers are potatoes, spinach, whole wheat, brown rice, popcorn, carrots, greens (like kale) and black beans. I also try to limit the medium oxalate foods to 1 per day, and make sure everything else I eat is low-oxalate for the day. Be careful of cereals and rice cakes, most have whole wheat or brown rice ingredients.

Also, i saw you have an IUD. Does this give off hormones? My doctors were able to determine that the birth control pill I was on for years actually caused my VV. Might be worth looking into.

Hope this helps!

[ezerfas]

Low Oxalate Foods

JennyBird,
Yes, the low oxalate cookbook from VP is great!!
I combed through the book and about 2 years of newsletters
to come up with a summary list, in categories, of common foods.

I also compiled a list of treatment recommendations over the same time period. Much of it came from the VP Foundation, from physicians and Dr Shaw at the Great Plains Lab. They have the best information available.

I agree that for women with IC and vulvar pain the IC diet doesn't help and I'm one of them. There are other substantial differences in supplements and treatment plan.

There is evidence that MANY of us have both problems.
Testing for urinary oxalates is a simple 24 hour urine test that most insurance companies cover. It's a shame more women don't know it. I personally believe everyone who has or thinks they have IC should have the urine test.

Happy to hear you are doing better.

Elyn

[JennyBird]

Hi Elyn,
I did the same thing a couple years ago, I compiled a list that mixed the low-oxalate diet from the VP cookbook and the IC diet. For me, I have to be on both.

that's interesting about the oxalate urine test. I didn't relize they had one! I just don't understand why more GYN's don't know about these things. I had to go to so many GYN's, and then VV specialists before I got a diaonosis. Most GYN's thought I was crazy, and said it was in my head. Hate that...they should know what it is, it falls under their are of experitise! I think more women have this than we think, they just aren't being diagnosed properly.

Jenny

[andreamarie]

My gastro had me do the twenty four hr urine test because I had surgery for Crohn's. If you lose part of your small intestine, there's a good chance you will have high oxalate levels. I was told to take 1000 units of Citracal, drink lots of water and avoid high oxalate foods so I wouldn't get kidney stones. I was doing this before I got i.c. I have vaginal itching but not VV. I also saw a nephrologist who said diet would only help so much because of the surgery. I was on a NO oxalate diet for months because I could only drink liquid formula because of Crohn's and the i.c. and itching was the worst ever. I suspect the Crohn's triggered the i.c.
Re the i.c., the i.c. diet hasn't helped me much, but a low acid diet does.