Oh, no! Not another diet!…If at first you don’t succeed, try, try again!
Yes, on April 16th, 2009, we started another diet for Lynsey. This one is the Low Oxalate Diet which will add to our already Feingold/GFCF++ diet.
What is the Low Oxalate Diet?
On this diet, we elminate foods that are high in oxalates, mostly certain fruits and vegetables, a lot of grains, nuts, and seeds. Beef, chicken, pork, eggs, and fish contain no oxalates and can be eaten freely. The goal is stay low oxalate, but even doing low and medium oxalate will help symptoms, and that is what we are doing right now until we can get a handle on the diet and learn how many oxalates Lynsey can handle a day.
What is an oxalate?
(Since we are very new to this diet, and I am still learning, I will paste the answers to these questions from another web site and include the link if you want to explore that web site more.)
Here is a link to Great Plains Laboratory and their explanation of oxalates, and particularly how it relates to autism. It is very informative.
From http://lowoxalate.info/ : “Oxalate is a molecule that links up with calcium and then crystalizes under some conditions, including when it encounters damaged tissues. The crystals formed this way can be quite irritating and painful to tissues where they form, causing or increasing inflammation. These crystals can be especially painful if they lodge themselves in places where they get in the way of the movement of other things through tight places.”
From the Great Plains web site: “Oxalate and its acid form oxalic acid are organic acids that are primarily from three sources: the diet, from fungus such as Aspergillus and Penicillium, and possibly Candida (yeast), and also from human metabolism.”
Many kidney stones are composed of calcium oxalate. High oxalates were first found in the urine of people who were susceptible to kidney stones. Therefore, the Low Oxalate Diet has been found to be very helpful for people with kidney stones. High oxalates are found in foods like chocolate, soy, wheat, berries, peanuts, cashews, almonds, and more.
(This is the official LOD web site which lists high, medium, and low oxalate foods. They test foods for oxalate levels and report any changes. http://www.vulvarpainfoundation.org/)
This is likely why we saw some improvements in Lynsey when we first started GFCF and found out she was allergic to peanuts. On GFCF, we eliminated soy and wheat, and I always knew berries were a problem for her. We did introduce almonds and cashews when we removed peanuts, but in small amounts. In January, we reintroduced berries, attempting to do a yeast free diet, and that is when we saw an increase in accidents.
For women, high oxalates cause vulvar pain. This diet was first started by the Vulvar Pain Foundation (VP Foundation). Great name, huh? Apparently, some women experience vulvar pain when eating a high oxalate diet. Oxalates can also be deposited into the bones, so when they are elminated (like when you start on a LOD diet),it can cause pain. They can also experience pain in other areas of their body – oddly enough, like the eyes.
It is thought that the oxalates are trying to be eliminated from the body through the eyes and can cause pain. We have experienced that just this week! It was quite odd. I had read about it and for the last 3 days, Lynsey has been complaining that there’s something in her eyes and that they hurt and she will rub them. When I look, there is nothing in her eyes. This has happened on several other occassions in the past now that I think of it and sometimes she will scream for her glasses. I’m thinking maybe she thinks her eyes are hurting because she’s not wearing her glasses, but that has never stopped her eyes from hurting. So strange! At this point, nothing surprises me. It still amazes me how the foods we eat can cause so many of the negative behaviors and symptoms we have.
For my daughter and other kids, it causes potty accidents. This would explain the tummy aches as well. For children, it also causes moodiness, tantrums, etc. I’m not sure if that is from the pain they are in or if something else is causing it. The women on the “Trying Low Oxalate” forum desribe themselves and their kids as having major mood swings while “dumping.” This is a term they use to describe the process the body goes through (usually lasts 2-7 days), when their body is eliminating the oxalates. The first dump when starting the diet is usually the biggest and most severe in terms of symptoms, although some people don’t notice any negative effects during a dump. Usually people experience a honeymoon period during the first week on the diet, whem symptoms disappear and they feel great. Then after a week, or sometimes several weeks (depending on how strict they are with staying low oxalate), they will have an oxalate dump and some of the same symptoms they have from eating high oxalate will re-appear for a short time (2-7 days). After this first dump, the frequency and severity of the dumps will lessen and there are supplements which can help with this.
Why Are Oxalates a Problem for Some People?
From http://lowoxalate.info/ : “Ordinarily, the gut won’t absorb much of the oxalate from the diet, and the oxalate will just leave the body through the stool. Under other conditions, a lot of the dietary oxalate is absorbed. Overabsorption is far more likely to occur when the tight junctions between the cells which line the gut open up and let molecules pass through between the cells in a condition called the “leaky gut” which is similar to a condition in the bladder with open junctions called the “leaky bladder”.
How Did We Learn About LOD?
A year ago, when I was looking for a DAN! doctor, I first called Dr. Brown in Milwaukee. While talking to the receptionist and explaining Lynsey’s symptoms, she said, “Sounds like she may be an oxalate kid.” I had no idea what that meant and kind of forgot about it. We never saw Dr. Brown because his waiting list was 5 months and he was over 2 hours away, so we decided to see Dr. John Hicks in Warrenville, IL. (We just got on Dr. Brown’s waiting list which is now 11 months!)
Then while on the www.gfcfdiet.com forum, a couple times people suggested I look into the “Trying Low Oxalates” Yahoo forum. I signed up for it but never really read much about it. In January, 2009, I started to implement somewhat of a yeast free diet, trying to stick with non-yeast feeding fruits. Those are pears, blueberries, raspberries, blackberries, cranberries, limes, and lemons. Almost all berries are high oxalates and Lynsey was eating raspberries and blueberries quite often. In January she started having a lot of accidents – like every other day. I thought it may have been from yeast die off or yeast overgrowth or from certain supplements. I stopped a few of her supplements, but the accidents continued. She was also complaining more of tummy aches. I had found a triple berry jelly that she liked and she was eating a lot of PB&J’s with almond butter and brown rice bread – all high oxalates. She also ate carrots almost daily – another medium/high oxalate. Much of her diet was high oxalate. She liked soups like chicken soup which was made from a homemade broth with parsley, carrots, and celery(all high oxalate). She liked tomato soup, vegetable soup, spaghetti, potatoes, potato chips, and raspberries. She ate soup at night a lot as a snack and often complained of a tummy ache at night after her snack. I always thought it was from the probiotics (since she took those at night right after her snack) and backed off of those. Now I have been able to increase her probiotics without any problems.
In April, I finally looked more into the LOD diet and discovered Lynsey had many of the symptoms that people on LOD had prior to the diet. Oxalates can cause frequent and increased urination, urgent need to go, and accidents in young kids. They also often cause kids to become extremely moody, irritable, and have a lot of tantrums. They often cause pain in the abdominal area as the oxalates move through their bodies. This is probably why these kids are so moody. When they don’t feel well and are in pain, it’s hard not to be.
The first day we started the diet, she immediately stopped having accidents. Then another day, and another day with no accidents whatsoever. After about a week of no accidents, I let her have some carrots and a rotisserie chicken made with parsley, garlic, carrots, and red potatoes. She started to have a tantrum while still eating the carrots. She couldn’t get the carrot on her fork and was throwing a fit. After dinner, she had an accident. Then the following day, back to no accidents. The next week, I let her have a prune. I wasn’t sure if it was high or not. 10 minutes later, she had an accident. I looked it up and found out it is not a low oxalate, but by then I already knew that.
She also immediately stopped having tummy aches. The couple times that she has had a tummy ache has been after eating something high oxalate. So for Lynsey, oxalates cause accidents, tantrums, and tummy aches. The first week on the diet, she also started talking much more clearly and her mood was much improved. That began day 1 on the diet. That continued for about a week, and then tapered off. I’m not sure if we’re even doing the diet right or if we are staying low enough in oxalates, as we have not eliminated medium oxalates yet, but we do limit them. I need to find new recipes again. 🙂 So, I’m not sure if she is going through a dumping phase right now, or if she is getting too many oxalates, but her moods have been up and down, with nothing consistent. But, we are still learning through trial and error, and so many foods have not even been tested, so we really don’t know what level of oxalate they are. You pretty much just have to see if it causes issues for you or your child. The online forum is great though because you can talk to other people who have a better grasp on the diet and know which foods typically cause them problems, even though they haven’t been tested yet.
The research into oxalates is fairly new and there is still so much to learn by everyone. Susan Owens is one of the leading scientists researching oxalates and she is often on the forum to answer questions and reveal new research.
There seems to be a relation between oxalates and autism as well. There is almost always a link between yeast overgrowth and autism, and interestingly there is a also a link between yeast overgrowth and high levels of oxalates in the body. The presence of oxalates in the body seems to prevent yeast from being held in check.
Can I test for high oxalates?
Yes. Great Plains Laboratories has what is called a full OAT test. It is a urine test and they will test the number of oxalates in the urine. If this number is high, you likely have an issue with high oxalates. It will also test for yeast and bacteria. I plan to do this test next week.
As I learn more, I will post. I’m working on putting together an LOD/GFCF cookbook, but it will probably take a while as we try out new recipes.