Gluten Free diet

Has anyone tried a Gluten free diet?
I have seen where a low oxalate diet might work and investigated. It was so confusing and every list of foods gave different levels.
If I tried a gluten free diet I wondered how long I would need to try it to see some resutls?

I know Vicki is big on that. I try gluten free here and there....in general, I feel better when I avoid sugary, yeasty, things etc etc...

It would be nice if someone could post like a ''How To'' for going gluten-free.

Yep, you need to talk to Mouse (Vicki) about the gluten diet and I suspect Heidi about the low oxalate diet.

Julie, I had been GF for 6 months before my V started. I think gluten is a toxin so would advocate giving that a go. Humans aren't designed to eat grain and there's really good research around showing the devastating effects of gluten.

I was diagnosed with coeliac disease in August 09 (so GF from then) got the two lovely bartholins abscess in December 09 and the V after the surgery in February 2010. Once you've pissed off your immune system it's all down hill from there.

I really believe diet and the lifestyle choices we make play a big role in healing. Cutting out sugar gave me a few months reprieve but I also meditated, got quality sleep, reduced stress, ate really well, had face time with favourite people, regular therapy, cut down coffee, drank loads of water and soaked up the sun. I can't seem to get on top of it at the moment though. Huge stress in this house!!!

However I am not going to try the low oxalate diet. My diet is restrictive enough and cutting out sugar seemed to work. I think for oxalates you would be silly not to get your urine tested in the first instance.

I'm happy to give GF advice! It's my daily challenge but I eat lovely healthy fresh food!

Julie,
A gluten-free diet may definitely help you if you are sensitive to gluten (supposedly millions of people are and don't know it). Gluten can destroy the intestinal lining in sensitive individuals leading to a problem called "leaky gut" which allows a lot of toxins to enter your blood stream which a healthy intestine would keep out (other things can cause leaky guts also). This can cause all kinds of problems throughout the body . . . including bladder and genital pain. The Autism Research Institute has the best and most reliable scientific information for the lay person that I have found on leaky guts and its connection to gluten, oxalate, and casein. They are the leaders in this research because a large percentage of autistic children also have intestinal symptoms (and many of these have bladder and genital symptoms), and helping them heal physically had also helped them developmentally.

This first link is to a page on their website about diet intervention for autism. You will see after the first question some links to various topics on their website including a gluten-free, casein-free diet, what it means and how to start it (just disregard the autism specific info).

http://www.autism.com/faq_diets.asp

You will also see a link to the low oxalate diet. At first the Autism Research Institute was only promoting a gluten-free, casein-free diet for people with autism, but they found that many of these children also had pain, burning and itching in their genitals, bladders, rectum, and/or skin (boys and girls). A lot of times these symptoms got worse after starting the GF diet. They have found that the low oxalate diet in conjunction with a GFCF diet can really help these children -- many have complete relief from the burning sensations and pain. They believe that oxalate is one of the toxins that gluten-damaged intestines let into the blood stream, thus causing the burning sensations and pain. They also believe that this pain gets worse for many people when they start a gluten free, casein-free diet because many of the foods that people substitute into their diet when they can no longer have gluten or casein (in most dairy products) are so high oxalate. Many people who were eating moderate levels of oxalate began eating very high levels of oxalate and started having pain. Some people can just be gluten-free or gluten-free, casein-free, as long as they don't add a lot of high oxalate foods to their diet and the pain/burning gets better. Some need to be low oxalate as well.

Here's their link to the low oxalate info.

http://lowoxalate.info/

I'm personally trying to put the pieces together to see if I can get "pain-free." I have had my urine tested (make sure you do the 24 hour test) for oxalates and I did show hyperoxaluria (most of the time the oxalate levels in my urine are normal, then once or twice a day they spike to obscenely high levels). You can get more info on this test from the VP Foundation (www.thevpfoundation.org) or from the Autism Research Institute. I do not think I'm sensitive to gluten, but after I try a few other things first, I am willing to give it a good go (I think you need to give diets like this a lot of time. It can take 6-8 months on a gluten-free diet for all gluten to leave your body). It's definitely possible that I am sensitive to oxalate because of a gluten issue . . .

I also agree that the LO diet is hard to follow at first, although it has become second nature to me now (following it while feeding a growing family is not second nature however. DANG). You really need to get up-to-date information (same with gluten free diets). The Trying Low Oxalates group on yahoo.com has a comprehensive, up-to-date list (148 pgs I think at last count) of oxalate values for common foods including a lot of commercial ones (http://health.groups.yahoo.com/group/Trying_Low_Oxalates). You can also get a decent list off the Autism Research Institute's website, plus the VP Foundation Cookbook--Book Two also has a very good list and takes you through the steps on how to start the LO diet for treatment of vulvar pain.

Hope these resources help.
Heidi
http://lowoxalatefamily.wordpress.com

When I re-read my post, parts of it didn't seem clear. Being gluten-free (and casein free) did not cause the increase in genital pain and burning (or the onset of it). They believe the increased oxalate in foods that were substituted for lower oxalate foods while following the gluten-free diet did. Eliminating gluten can heal the intestine, decrease the toxins and oxalate in your blood stream, and decrease genital/bladder pain levels by itself IF this is the reason for your vulvar pain.
So yes. The gluten-free diet can definitely work alone.
But some people also have to follow a low oxalate diet OR at least eliminate the high oxalate foods.
Heidi
http://lowoxalatefamily.wordpress.com

It doesn't take years for gluten to disappear from your system. It can take years for the damage to the small intestine to repair if you have coeliac disease however. The antibodies the body produces to fight the gluten invasion can hang around for a while also. Gluten is more likely to cause coeliac disease (1 in 100) or non coeliac gluten sensitivity (10% of population) leaky gut is far less common than these.

I've been trying different diets in the last few months to see if it can help my pain. I have a question for some of you experts I did a food sensitivity test (very $$!) and all it came up with is a moderate sensitivity to eggs and mild sensitivity to oats and sesame. I had absolutely no sensitivity to grains, gluten or dairy.
My naturopath put me on an anti-inflammatory diet and low oxalate. These seem reasonable given a lot of pelvic pain from SI problems and endometriosis in addition to v. and anecdotal evidence about oxalates. However, a month later my pain had gotten worse, not better, although there are other variables that might explain it.
When I went back to see her she put me on a gluten free diet because the other two weren't working. Given the fact that I have no sensitivity to gluten, does this make any sense to you? Actually after two weeks of trying it (I wasn't perfect tho) I developed digestive problems and chronic itching/burning back there. Mind you, I also tried Celebrex for muscle pain which has a lot of GItract side effects. It's hard for me to untangle what's causing what, but given the lack of any evidence I'm gluten intolerant this seems like a lot of work for not much benefit. However, I'm not that well versed in this diet stuff yet. What do you ladies think? Is it worth it to keep going?
Thanks!!!

Zuzu,
From my personal experience and from my communications with other women through the VP Foundation, yes, it is common to have flare-ups and actually feel worse in the first few months on the low oxalate diet. Part of the reason for this is your body periodically dumps excess oxalates that have been stored in your tissues once you are no longer putting as many oxalates into your system. So you may periodically have higher oxalate levels in your bloodstream/urine and have worse pain. Part may be for other reasons, too, as you mentioned. And I agree! It is really hard to tell what is helping when you are in severe pain. You may be better and still be in severe pain. It's only when you start having a day or hour here and there of moderate pain that you can really say this might be working.

My body was a mess before I started the low oxalate diet. My tissues were extremely thin and sensitive after two years of steriod creams and acid treatments, so it took a long time for them to heal. I had some pretty bad flare-ups in the first year I was on the diet, but I did see gradual improvement. It was one of those two steps forward one step back things. (although occasionally I went three or four steps back!) It was only from keeping a diary of my daily pain levels, treatments, and diet that I began to see patterns emerge and realized I was having more "somewhat normal" moments in my day and a higher quality of life. This also helped me realize I was sensitive to high acid foods (although now that I'm doing better the higher acid foods no longer bother me).

Most diets are not quick cures. The longer a sensitive person has been dealing with something like oxalates or gluten, the longer you may take to heal. I don't believe you gave the low oxalate diet a long enough try to see if it can help you. The VP Foundation recommends at least a 6 month trial, while the Trying Low Oxalates group suggests 6 - 12 months. Some women see immediate relief (within 1-2 weeks) from their worse symptoms on a low oxalate diet, but many others have to chart their progress over months to see that they are improving. I highly recommend you either buy the VP Foundation's Cookbook -- Book Two or join the Trying Low Oxalates yahoo.group (be fore-warned that most of the people on this site are there for the treatment of autism, but there are a lot with vulvar pain, too.) Both of these resources can give you the information and support you need to start and follow a low oxalate diet, feel confident that you are doing it correctly, and give you scientific feedback and support for problems you may have (like dumping and extra pain in the beginning).

I also agree the gluten-free diet is a lot of work! A lot more work than the low oxalate diet because you have to worry about contamination from things like cutting boards and counters and people's hands. For people who are gluten sensitive I have no doubt it's worth it. For people who are not ??? Can it help your vulvar pain??? I don't know. Every testimonial or account I've read said that the gluten-free diet can help vulvar pain, itching and burning in women with gluten sensitivities. I haven't read anything about women who are not sensitive to gluten being helped. I've only considered going on a gluten-free diet because I know my vulvar pain is caused by sensitivities to oxalate and that intestinal damage due to gluten-sensitivity is one way excess oxalates can enter the bloodstream (there are three or four other ways that I know of . . .). I also know that when I started having problems with hypoglycemia and stopped eating bread I felt a lot better (not just the hypoglycemia, but the VP too.) This may be because whole wheat bread is high oxalate (most white bread is medium). But it may be that I'm sensitive to wheat or gluten. I'll get tested first though because going gluten-free is very hard in a family with bread-loving toddlers!

Hope this helps.
Heidi
http://lowoxalatefamily.wordpress.com

I want to thank everyone for all their input. It was really helpful. I've tried Gluten Free and don't feel anything different.