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.
Written by Sheri Fortes - Visit Website
Author of "All Natural Mom's Guide to the Feingold Diet"
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Are you still on all the diets? We have been gfcf for about 1 1/2 years, Feignold for about 4 months and now low oxalate. Do you have a food list you use? Trying to find stuff, that won't keep me in the kitchen all day, has been difficult. Really struggling on "milk" and flours. Thanks for any help!
Hi Kayla. Yes, we stil do low oxalate to a degree. We are still on GFCF and Feingold. What I have found, is that trying to do multiple diets all at the same time is EXTREMELY difficult, but we do our best. What does that look like for us? Well, for LOD, we just stay away from the high oxalate foods that I know cause a problem for my daughter. Those would be pumpkin, sweet potato, all berries, chocolate, soy, and limited tomatoes and white potatoes – off the top of my head. I recently have been reading about the Body Ecology Diet so I have been trying to slowly incorporate parts of this diet. On this diet, she can eat red potatoes and lots of veggies. No fruit so that makes doing LOD a little easier. It does include red potatoes and carrots and celery though which are high oxalate. I give her Allerase by Enzymedica when she has veggies now though and that seems to help her digest them better. I've added in some cultured veggies (Rejuvanative Foods brand sauerkraut for now till I make my own – from Whole Foods). That is supposed to heal the gut and serve as a probiotic and enzyme at the same time, eliminating the need for some supplements. Anyways, to answer your ?, I don't have a food list per se. I've recently switched to So Delicious coconut milk because I read that rice often contains arsenic. Great. Plus rice is a starch and yeast feeding anyway. Coconut is much better for you and I honestly don't taste too much of a difference when I put it in my cereal. Flours – LOD is difficult in this respect because they have not researched many of the GF flours. I've just been using Namaste Perfect Flour Blend. I also use a flour mix from the book "Cooking for Isaiah". I really like this cookbook, though it has lots of sugar in the recipes. There's a banana pancake recipe that's good and baked onions that we like. I'll have to write an update post soon. I'd like to get her to the point where her gut is healed and she can eat all fruits and veggies without issues. The Body Ecology Diet and even the Raw Foods Diet eventually sound promising, but they're difficult to implement, so we're getting there slowly. As far as in the kitchen all day – LOL! Can't help you there. That's where I'm stationed. I did just get a dehydrator though which I'm having fun with. I'm hoping to save some time cooking and trips to the grocery store with that. I've dehydrated pears, mango, bananas, apples and strawberries(for me), and plan to do onions, potatoes, carrots, etc.
Hope that helps some.
Thank you so much! I will look into getting the book, Cooking for Isaiah. Thanks again!
Taking Calcium Citrate before a meal helps tremendously as well. As I understand it, the Calcium binds with the oxalates in the gut and therefore does not leak out. It works well for me, I suffer from urethral pain caused by high and medium oxalate foods. I also still do my best to avoid these foods.
I'm wondering now if my 12yr old boy/girl twins also should be on the LOD. They are both ADD. I know it may be the age but my daughter has become extremely sensitive, whiny and hard to live with lately. Her brother can be just as bad at times.
… my blog is outdated… so ignore my info, I have so much to say but have to keep it simple. Ive spent almost 11 months now trying to figure out what allergies my kids have. Hours and hours everyday, your site is the first site I have found that says it all, my life! I plan to write a book on everything I have learned. We are now going to do Oxalate, Feingold,diet… still have some corn, dairy issues but I know there is still more to learn. I am now homeschooling because my children could not focus or concentrate at all after changing their diet. My main question Im searching is for Infants. My daughter 4th child is how we learned about all of this. She had bad reactions to formula… we now have her on Allimentum similac but I know she is still reacting to something in there. I want her off. She is so puffy, swollen on her ankles, legs, arms… everyone thinks its so cute she is just a chunky baby but I know its not that. All my babies were lean babies. She reacts to almost everything I give her. Table foods etc. I am having a hard time finding what I can switch her too. I am doing the same diet with her except the formula. What do you feed your baby? She will be 1 in January and I dont even know what to switch her to after she turns 1. Please help!
Hi Jennifer. I'm so sorry it has taken me so long to respond! I've had trouble with my blog. E-mail me and I can send you a baby cookbook of sorts that I have just started. I'm not done with it, so I'm not going to post it yet. But I can send you what I have so far. You can try Pacific Rice Milk Original (other rice milks have gluten even though they may claim to not). If you know she's OK with gluten, the others would be OK though. Or So Delicious Coconut Milk. My daughter likes this. Or Hemp Milk – Living Harvest is supposed to taste the best. Hemp Milk is very healthy but not the best tasting, so maybe try this one first. When they've not had anything else, they are less picky. My daughter got hives on Halloween, and I still haven't figured out what she's allergic to! She will still get a rash on her face and a runny nose occassionally that I know is from some kind of allergy. For some odd reason, I believe it is bananas, apples, and possibly rice, coconut, tomato, and/or eggs. Strange! She's already GFCF. What does she eat? A lot of chicken – homemade chicken nuggets (with organic chicken – I get Smart Chicken brand from Woodman's), Ian's chicken nuggets with the crunchy outside removed, organic tator tots, Imagine tomato soup, a little organic white rice (brown rice is harder to digest), raspberries, grapes, peas, green beans, taco meat, hamburgers (grass fed – we order from http://www.grasslandbeef.com), rice spaghetti, or sometimes quinoa/corn noodles, spaghetti squash with spaghetti sauce, various chicken and rice recipes that I have, gluten free chicken noodle soup by Health Valley, Erewhon rice crispy cereal with coconut milk, Applegate Farms beef hot dogs (I peel the skin and cut up very small), Ian's french toast sticks with agave syrup if I give her anything to dip in. Other fruits and veggies as they are in season. We're in the midwest. Snacks – Funyon type snacks from Trader Joe's, sometimes Tings or Glutino GF pretzels, Ruffles potato chips or Lay's on occasion, So Delicious vanilla coconut ice cream (she's goes nuts for this every day), homemade GFCF muffins, cookies, pancakes, etc. I'll try to get a sampling of baby friendly recipes organized and posted on here soon. She has just graduated out of homemade baby food (she's 16 months). Oatmeal would be good too, or quinoa. Hope that helps! I don't have her low oxalate/salycilate but I am watching for a reaction. It's hard to tell at her age, but I remember my other kids would bite from sal's and soy, and I did notice she was biting the other day when she had Glutino pretzels for the first time, which have soy. Good luck.
Very important must read for those interested in the LOD diet!
It seems that I'm currently sensitive to oxalic acid (makes my bp sky high) so I'm trying to see what happens if I go low-oxalic acid. I'm trying to find out where hemp stands on the chart and I'm coming up empty. I've been told chia is high in oxalates. I'd really like to be able to add either chia or hemp to my breakfast (for protein mostly — I'm a vegan) but if they're both really high, I'd stay away.
Hi, my son is having so much oxalate problems, he has not been diagnosed but just reading online and trying low oxalate food has changed him. I live in MN, Please let know where I can get help for my son or somewhere near. I could go to Dr. Brown as stated by author but I don't know where this location is either. My doctors are all pretending oxalate is not an issue for toddlers. I'm really desperate, his pain flares seemed to slow down in the summer, but now its happening every other day and at least 2 times a day. Its very painful, he is rolling around like a possessed child.
Hi, I posted a comment a few days ago but not sure if you got it, I really need to find help for my son. We been doing the LOD but I don't think I'm doing it right. Need to find a doctor desperately. My son has pain flares all the time.
Hi! Dr. Brown is in Waukesha, WI, a little over an hour or so north of the IL border. He's with Serenity Healthcare. I'm sorry to hear about your son. Have you reduced the oxalates in his diet? What is he typically eating? Oxalates are linked to candida (yeast) overgrowth as well so it helps to treat yeast as well. I give my daughter magnesium and calcium every day, especially before meals that are higher in oxalates. Mag and cal bind to oxalates and take them out of the body. Don't give vit D at the same time as mag and cal as it will help the body absorb cal and mag and you want the cal and mag to bind to the oxalates. You can give vit D/K and cal/mag together away from meals. B-6 daily or a good B complex with B-6 in it is also helpful for oxalate overload. My daughter had terrible eye pain until we reduced the oxalates in her diet. She is now 12 and does OK with some oxalates but can't overdo it. But she can tolerate a lot more now than before. Dr. John Hicks is also good. He can order tests to see what's going on in his body. He is in CA but he does Skype so we still see him. You can get in to him right away. He's good. His number is 262-740-3000. Good luck. I hope you find something that helps your little guy.
Thank You very much Sheri for the information. I live in MN where lots of important doctors are located but I cannot find anyone and his pediatrician seems clueless.
About magnesium and calcium, do you give it before eating right away or do you have to wait like 30min?
Yes, I give it right before she eats. If they are capsules, you can do 20 minutes before, because it takes about 20 minutes for the capsules to break down in the stomach. I was using Water Oz brand cal and mag but they just went out of business. Check out http://www.nutritiongeeks.com though. They replaced them with a new similar brand.
Thank You. I did not know it came in liquid form. How much do you give? Just what it says on the bottle or split it between meals?