Originally Posted By: kml
MMH -
Just some odd thoughts about H's sarcoidosis. Have been doing some reading that autoimmune thyroid disease is very prevalent, esp in men over 40 with sarcoid:
http://www.colorado-family-law.com/alimony-maintenance.htm

Also that gluten sensitivity (mild or full-blown celiac disease) may be more prevalent in sarcoid patients:
http://www.ncbi.nlm.nih.gov/entrez/query...l=pubmed_docsum
http://www.ncbi.nlm.nih.gov/entrez/query...l=pubmed_docsum

And since there are various autoimmune diseases where going on a gluten-free diet (the treatment for celiac disease) can cause a remission of the other autoimmune disease:

Seems to me, if his sarcoid is getting worse, he's got nothing to lose by trying a gluten-free diet. You can look at http://www.celiac.com for more info on the diet.

Ellie


Thanks for stopping by & posting the links on the sarcoidosis - I'll visit them & bookmark them for a later time when Byron's ready to deal with the information - right now his motto is so long as he can deny it then it must not be so - a bad ingrained habit that he's learned from MIL Mary

Actually Sarcoidosis is prevelant among young black men & women especially high in those populations who have been or are in the military (Byron was 1st diagnosed with sarcoid while he was serving in the Navy over in Iceland)

they have had no explanation as to where it's coming from since sarcoidosis is from unknown outside sources rather than being inherited as most diseases are but more people are starting to learn about the disease with the advent of the internet

those who are in their later years when they go into their history it's usually found that the people had been suffering from it back in their younger years but that they had been misdiagnosed by doctors who aren't familar with sarcoidosis & the fact that it imitates many other diseases depending upon those areas which are affected -

Byron is in the 2% group that when it's active it hits the bones & eyes while his lungs are showing clear so the lung tests that would alert most sarc patients never alerted for us -

in fact I'm the one who told the general practioner that what he was seeing on the xrays was most likely sarcoidosis rather than bone cancer which is usually a secondary cancer after cancer has already been in the body but typical doctor mentality is that patients don't know a thing
doctor shashtri was insisting it was cancer & part of the hand would have to be amputated & of course he poo-pooed me for the research which I'd found on the internet even though it was from a college medical report that i found out the information about the stats on sarcoidosis & the fact that 2% of people get it in their bones & even saw xrays of what sarc in the bones looked like on the site

the orthopeadic & oncologist both said after the surgery that what ever it was it wasn't cancer that they were looking at so it most be "that disease that you were talking about 'cause it's not like anything which we've ever seen before a grey jelly like mass with what looks like sand in it"

You know the old saying about leading the horse to water but we can't make 'em drink... well that's been Byron since the sarcoidosis has come out of remission to stay since 01 when the above happened

the problem he's been in as much denial about just how bad he's actually making his own self - even after the docs have told him time & again that he's got to take his Rxs properly & live healthier... Byron was even threatened with being kicked out of the prestigious Remicade study which he was lucky enough to get into & so many sarc patients were wishing that they could've been a part of at the time

when Byron's ready to accept fully that he's got to eat & live healthy then I can once again start back onto his healthy diet, but alcohol for his body is one of the things which sets his sarcoidosis off on his body

I have no control over what he eats in terms of his diet while he continues to live with his mom so to worry about what he is or is not eatting & drinking I've given up on since all it does is give me stress over something which I have no control over in the 1st place,
when Byron's home again is when it'll once again be my responsibility to make meals for him that will help Byron to regain his health but for now it's something which God will have to deal with

LimboLand can be liberating in that sense once a person comes to be comfortable there - a firm set of boundaries in place & as observer only
Byron's got to handle his own messes & it's not my job to try to unravel the knots or pick up the pieces unless he invites me in to his domain of life
it's only my job right now to be available to encourage him along on his road in life & to be supportive of him regardless of his choices -

it's Byron's job to learn from the mistakes that he's making & to deal with the issues that he has from the past it's my job to pray for Byron at this point & God's job to answer those prayers in His time & in His way...
I've seen many prayers answered directly & others that I see are in process & in God's wisdom He knew that this time period although not what I wanted has been very much a time of growth as well as pruning for me just as much as it is for Byron

When this is over it'll be all to God's Glory not any human will be able to take credit for restoring this marriage just like the vision of the dry bones

well I need to get this post onto the board I started it last nite before I went to Intercessory Prayer meeting at church & left it all night & now need to get g-son & self out into the air & hopefully Daughter will be able to come join us in the park later on & bring g-son's bike out to the park so he can ride it around

Love Your Sister in Christ & Fellow Stander