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[M's response continued]
Based on what I have learned on Susan Owen's oxalate list, when you absorb
too much oxalate, it appears to get stored in tissues, and when you go low
oxalate (for an adult 40 to 50 mg/day), the tissues begin to release
oxalates, which then can be eliminated from the body.
Elimination routes include urine, feces, skin and maybe lungs. It is
important to note that you can have a normal 24-hour urine oxalate level and
still have an oxalate problem. For me, the oxalate seemed to be coming out
of my skin and not urine. (24 hour urine test normal) While I was "dumping"
oxalates heavily, my skin was flaking like crazy, and fine lines of white
were especially noticeable on my hands where the skin became so cracked and
irritated that it would bleed. You should be aware that when you "dump"
(what we have come to call it on the oxalate list), the symptoms which later
improve, get worse at first. We have learned that an initial worsening of
symptoms is a good indication that you will be a responder to the diet.
There are various strategies that list members have learned to reduce the
symptoms while dumping. I would suggest that if you try this approach, to
join the list because the dumping symptoms can be really hairy. It is a
yahoo group called Trying_Low_Oxalates. I consider the cost of the
worsening of symptoms to be well worth the longer term improvement, which
for me has been dramatic and greatly improved my quality of life.
The yahoo group, Trying_Low_Oxalates, is THE place to look for info about
oxalates. There is no other site which comes close to it. Susan has been
attending conferences for oxalate scientists and has recruited some of them
to do work relevant to the autistic children's needs (and by extension
relevant to the rest of us on the list). I would recommend joining the
group and reading the files
sections if you want to learn more about oxalates. Susan also has a file
with a long list detailing improvements seen in autistic children and
nonautistic children and adults on the list. Susan and the list are a great
resource.
Another thing to be aware of. When you are low in thiols (sulfur compounds)
as just about all autistic children are, it contributes to problems with
oxalates. Well, what are some of the things causing you to be low
intracellularly in thiols and with blocks in the sulfur chemistry. Well,
two things are chronic inflammation and chronic infection. Sound familiar?
Chronic inflammaion, of course, is characteristic of untreated celiacs.
When there are low intracellular thiols, it appears to contribute to
difficulties getting rid of the oxalate, at least through the urine, and can
lead to increased endogenous production of oxalate. These are things you
would learn about on the list.
I forgot to mention--a low oxalate diet would not be a forever diet the way
gf is for celiacs. Once you have gotten your tissues to dump all the stored
oxalates (and this is something you have to deduce at present by symptoms
while on LOD), you should be able to gradually add back
medium oxalate foods. I would never go back to a diet with high oxalate
foods. Possibly at some point I might consider just eating a portion of high
oxalate food once in a great while if I really wanted it and was willing to
tolerate some problems with my body.
Anyone who has been eating the gf grains or been on the SCD including lots
of nuts (very high oxalate) probably would benefit from a trial on the LOD.
The grains which are low oxalate are white rice and wild rice. The most
complete list of oxalate content of various foods is in the Low Oxalate
Cookbook, Book Two, put out by the Vulvar Pain Foundation. The VP
Foundation paid for testing oxalate content of a lot of foods and
supplements. (Vulvar pain is a condition in which high urinary oxalate is
implicated.) You can order the book from the VP Foundation, but they take
weeks to send it out. I think you can get it from amazon.com or wellness
pharmacy on the internet.
I did not start dumping heavily until I got the cookbook and learned that
the curcumin supplements I was taking provided about 20mg oxalate per day
which is too much for a LOD.
I would be happy to answer any questions you might have about oxalates. I
have been meaning to write to some of the celiac doctors to try to get them
interested in looking at oxalates in celiacs. Interestingly, the autistic
kids' bowel problems seemed to finally clear up on LOD.
They would get temporary relief with various herbs and medications
(anti-fungals, etc), and then symptoms would come right back. With LOD,
last improvements seem to occur in many of these children.
I also wanted to mention something that you might want to mention in your
oxalate summary. When I called Clive Solomons to suggest that the VP women
be tested for celiac disease, his wife (she was the one I spoke to) told me
that they had men in the pain project who had pain and
burning in the genitals also associated with urinary oxalate. It appears to
be equivalent to VP in women. I would bet you that there are men on the
celiac listserv with this symptom who have no idea what is causing it or
that it is oxalate-related.
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