Showing posts with label low oxalate diet. Show all posts
Showing posts with label low oxalate diet. Show all posts

Sunday, October 16, 2011

The oxalate roller coaster

When we started the Low Oxalate Diet (LOD) a year ago, we intended for it to be a trial period.  We had no idea how much it would change our lives and I don't mean the endless restrictions on food.

The first week is typically referred to as the honeymoon period, for good reason.  In that week, when oxalates are leaving the body fast and furious, the positive effects are clear and bountiful!  But like anything else, that provides deep healing from the inside out, the honeymoon period is short lived, as to be expected.  The following 8 weeks was nothing short of painful, for all of us!!  I've labeled that period of our lives as one of THE most challenging.  Just about every symptom they have ever had, came back in that short period of time, magnified!  As we were living it, we couldn't see the end in sight.  We didn't know that some day, the torture would end and our kids would come out of it glowing.  But when they finally did, we knew we could never go back, well, at least I knew that.  As is often expected, the spouses who just go with the flow of biomedicine question the validity of the diets, supplements and treatment protocols.  Not a bad thing, it encourages balance, and it keeps us honest.  But with this, I stood my ground, never losing trust in this important dietary change I chose to make for our boys.  Needless to say, after my husband saw the results of Gavin's oxalate dump, he was brought entirely on board with me.  There is nothing like witnessing your 30 pound child pee out thousands and thousands of oxalate crystals!! 

It's difficult, very difficult, to feed children who are already on such restricted diets, but with some research and experimenting, just like anything else, it became second nature.  A person on the LOD cannot eat grains, nuts and many common vegetables and fruits.  "Healthy" food choices are a matter of perspective.  In our case, spinach, raspberries and almonds, which are highly regarded as superfoods, would be physically harmful to our children.

So what does this all have to do with today's blog entry?  I'm sure you have seen my son's oxalate crystals picture in a recent entry.  In the process of "trying" a higher oxalate food (green beans!) I have caused my children to begin the dumping process all over again.  I don't know, if it will last quite as long as the first one, but as the oxalates leave the cells, there is no shortage of dumping symptoms in our house!!  Gavin is experiencing extreme moodiness, he looses the ability to communicate with us, staring at us blankly when we ask him a question, he has multiple potty accidents a day, he easily angers, he continuously tries our patience by doing things he knows are unacceptable (all while watching us for a reaction), he becomes defiant, he is clicking his tongue almost non-stop, and his BMs hurt even though he is not constipated.  He also becomes clingy and needy, he whines instead of talking (unless we remind him not to, over and over again) and he has regular belly aches.  Some of you are probably thinking, "this sounds like typical kid stuff to me"....it's not.  We have seen our children thrive on the LOD and we see the effect of what putting back the higher oxalates foods into the diet does to them.  It's simple, cause and effect.  If this is "typical" kid stuff around your house, I would encourage you to do some investigating!  Children with high oxalate problems become adults with kidney stones and worse.  Oh, and one undeniably huge sign for us is constant hunger.  When Gavin is dumping oxalates, it's as if he can't get enough food and considering his small stature, I can't imagine where he is putting it or why it doesn't cause him to gain more weight!!  I wish it would, that would be the up-side to this frustrating event!!  The oxalates must do something to the body that prevents him from using the nutrients in the foods he eats all day.

Susan Owens has been heading up private research into the connection between oxalates and autism for over 15 years.  She is part of the Autism One research Think Tank Team.  I asked her, if she could explain oxalates to me and I would like to share that explanation here:

Well, this is a whole different thread of autism research, so there is a bit of a learning curve here as there is for all of the different therapies, but let me see what I can do to define some things for you.

Oxalate is a simple but very reactive chemical that plants make in order to defend themselves against insect predators. I saw a presentation in Houston by an oxalate scientist who had modified a plant that caterpillars eat to remove the gene that made oxalate, and after the plant didn't make oxalate, that caterpillar would strip the plant until all that was left was the stick. This caterpillar might start munching on the oxalate-containing version of the plant, but would stop quickly. The scientists dissected the caterpillars who tried to eat the oxalate-containing plant and found their teeth were broken and down to nubs, which is why they stopped eating it!

I guess it is a good thing that not all plants make large amounts of oxalate, or we would have nothing to safely eat!

Our bodies are adapted to eat oxalate when everything is working the way it was designed. Our flora are supposed to have a microbe called oxalobacter formigenes that only eats oxalate and cannot survive on anything else, but it has been frequently killed back by antiobiotics that are used routinely. Also, most of the calcium that enters the gut from food (80%) stays in the colon and it is available to bind free oxalate and that keeps the oxalate from being absorbed in the colon. Casein contains a lot of calcium, so when someone is casein-free, the amount of calcium they get from the rest of the diet is reduced, so there is less calcium there to bind the oxalate that is in the diet. Taking calcium as a supplement before meals helps to remedy or at least help that situation, but timing is everything!

Once oxalate has been absorbed through the colon or through a leaky gut anywhere in the GI tract, it circulates through the blood and can enter cells, especially cells that are looking for sulfate, for it hitches a ride into cells using the sulfate transporter. If you are low in sulfate and high in oxalate, this is a problem!

Once inside cells, oxalate inhibits many enzymes, and almost all enzymes it is known to bind are enzymes that contribute to our energy or mitochondrial function. Key members of that group of inhibited enzymes are the ones that use biotin.

Biotin is a sulfur-containing vitamin that you get both from food and from bacteria that live in the gut. Oxalate inserts itself next to biotin in the active site of these enzymes, and shuts down the operation of the enzyme.

Because of which enzymes are involved, this affects our ability to use glucose, to make glucose, to make ATP, to regulate our fatty acid metabolism, and to run the Krebs cycle.

Scientists learned that the inhibition of these enzymes could be diminished by giving high doses of biotin. What we've learned on our listserve, is that in children with autism who definitely have oxalate issues, sometimes it takes biotin supplements even greater than 20 mgs. a day to overcome the enzyme inhibition.

A lot of the leakiness of the gut goes away when people first remove gluten from the diet. This seems to help many children gain gut integrity so that they won't absorb as much oxalate.

Ordinarily, people only absorb 1-2% of the oxalate in their diet, but if you have a leaky gut, that level can get as high as 50%. A normal diet has about 100 mgs of oxalate per day, so a healthy gut would only absorb 1-2 mgs. An unhealthy gut would absorb as much as 50 mgs. on a normal diet.

With the low oxalate diet, in adults, we cut back the oxalate that is eaten to 40-60 mgs a day, and in children less proportionately. This is not as big a deal as you would think, but it seems a big hurdle if someone has decided that human beings were designed to have spinach as a daily member of the diet!

I have heard of some implementations of SCD, for instance, that may have been as high as 400 mgs/day or four times a normal diet. On gf/cf, the vast majority of oxalate is likely to come from eating too many baked goods (although starch itself is not very high) but whole grains and brans are very high). They also may eat too many chocolate goodies, and way too high a quantity of milk substitutes. Every milk substitute but coconut milk and chestnut milk are very high oxalate, even in just one cup.

I think a lot of this would become much easier to grasp if you read the following mini-paper about the leaky gut that was written for parents and others who are new to all these concepts: www.lowoxalate.

Susan Owens


I will be sending Susan Gavin's oxalate crystals in a baggie.  I hope it will help in the advancement of her research!

Thursday, October 6, 2011

Oxalates move to front burner again

We have been on the low oxalate diet (LOD) for just over a year now.  We started it, because we noticed that although Grayson was doing better overall, he still had a lot of ups and downs that we couldn't tie to anything.  The bloating was not subsiding no matter what we did for him.  So the LOD was originally instated as a trial in September of 2010 and the severe dumping we experienced (in both boys, surprisingly) lasted well over a month.  It was one of the most trying times in our years of biomedicine.  We knew this was our new necessity!  The LOD became the new norm.

A year later, we are still on the LOD, although we do allow a few moderate oxalates in the diet on a rotation basis like GF oatmeal (due to such limited breakfast options) and very small amounts of strawberries.  Other than that, we are very strict with the diet.  So it came very much as a surprise to me when I saw this in Gavin's little potty last night!!

These are oxalate crystals....by the apparent thousands!! 

Crystals coated the bottom of his potty - this was a small "tinkle" left behind


















Very close-up of the crystals, OUCH!  They look painful, don't they?




















He has been having mood swings, BM changes and constant hunger that I was chalking up to the parasite (although we just recently treated with Alinia for 34 days). Anyway, yesterday was a busy day and so when he used his little potty above (as we were running out the door), I left it. It was just a tinkle anyway. When I got home and went to clean out the potty, I couldn't believe what I found.....a potty full of the oxalate crystals you see in the pictures!!! And there was not much urine to create this, so it was highly concentrated!

I have NEVER seen this from him before. The things that have changed in the recent past, besides the parasite medicine (which he has been off of for about a month now) are the following:

-Started feeding green beans, which we used to avoid or only give in very small amounts.  Some green beans are high, so this could be part of the problem.

-Allowing small amounts of strawberries, not even adding up to 3 strawberries at a time, every couple of days. We've been doing this for a while though. Strawberries are moderate oxalate.

-Just 2 days (today was third dose) ago we began using BioRay Cytoflora, the dump was the very next day after starting it, not sure, if this can cause dumping.

-We are in the midst of a supplement break and have begun re-introducing his supplements back in slowly. So far we have added back Vit D3, magnesium, krill oil with astaxanthin, zinc, flax oil, and today lithium orotate.

-Haven't reintroduced biotin back in yet, maybe I will add that back in today even though it hasn't been a few days since adding the lithium...

The symptoms we have been having for about a week are: excessive hunger (constant I should say), saying "hiney hurts", mood swings, defiance, lacking cooperation especially when it involves his older brother (lots of fighting), frequent potty accidents (it's like he doesn't even try), he even had a small BM accident yesterday which he has never done, whiny, looking for his lovey all day (which is kept in his bed for sleepy time, so now he is up in his bed reading books to be with it), saying he wants to "go to bed" all morning (but could be related to needing his lovey), had a very odd BM the night before the crystals appeared that was fluffy, chunky and half floated, half sunk and lastly his keratosis which is pretty much always there, is worse lately. I was thinking it was all related to the parasite possibly coming back, but now with this potty incident, I am thinking dump and wondering why.  Time to get back on the Trying Low Oxalates Yahoo board and figure this out.  It most definitely could explain the random bouts of regression we keep experiencing.  I am certainly confused between the parasite symptoms and this now though!!  In one strange sense, this is a bit of a relief, because maybe the parasite ISN'T back, like we originally thought!!  We will need to retest in a few weeks to confirm anyway, but the symptoms are so similar it's hard to tell.  It's pretty obvious we have an oxalate issue to resolve now though.

Friday, October 29, 2010

Pumpkin seed milk

Being faced with the fact that the low oxalate diet (LOD) is probably a good step for us has forced me to rethink "healthy" foods.  Who doesn't think eating a salad full of spinach, carrots, strawberries and beets topped with nuts is healthy?  (raises hand)  In my past life, this would be high on our list, in fact, there were many spinach and strawberry salads garnished with nuts, doled out to my kids.  But when it is determined that a food, any food, is hurting the body, the previous conception of healthy goes out the window.  It was so hard for me to wrap my head around the idea that spinach and nuts can be harmful!  To a child like Grayson, who tested as having triple the safe amount of oxalates, that is so.

So what does this chatter about oxalates have to do with my heading you ask...pumpkin seed milk.  Well, hemp seeds and almonds are very high in oxalates, SO....out they go.  No more hemp or almond milk for the kids.  This leaves us with nothing but rice milk and BLECH, no thank you!  Rice is a high carb, feeds yeast and is super sweet.  What to do, what to do....we compromise!  And in the end, we have a healthy milk option available at the press of a button, my Blendtec button, that is!  Home made pumpkin seed milk, which is just as easy to make as the hemp seed milk we were making.


Why pumpkin seeds?  For one, it's safe for us LODers and two, it packs a nutritious punch!  With the added benefit of being an anti-parasitic.  How many foods do you know that are high in Magnesium, tryptophan, iron and zinc?  These among other nutrients like manganese, phosphorous, vitamin K, copper, and protein (over 9mg per 1/4 cup serving!) combined with it's omega anti-inflammatory properties make pumpkin seeds a powerhouse food.

I try to remember to sprout the seeds before making a milk out of them, it increases the bio-availability of the nutrients and enzymes and makes them easier to digest, so as long as I just think ahead and toss a handful in a jar of water at night, we are good to go for easy healthy milk!  This step is not necessary though.

I have been using a tablespoon of seeds to every 8 ounces of water, but you can increase or decrease depending on the flavor and/or creaminess you prefer.  Blend, strain, bottle and refrigerate!

The kids both had their home made granola cereal with pumpkin seed milk today and I got the thumbs up!  I tried some in my coffee and I think I even like it better than the hemp milk I have been using which makes it easier, because that means I don't have to make multiple batches of milks in the mornings.  We do also still use coconut milk, but I have been using so much coconut in the form of flour, shreds, oil and sweetener (coconut nectar), that I don't want to over do it, so that is reserved for recipes that have other coconut ingredients in them already. 

So there you have it, another "milk" alternative!