update on my other problems

Thank you all.

Wendy... I am a gypsy at heart but have done most my 'traveling' through books and my art. I just finished a portrait of a freind of mine who passed last november. she was 83 years old and I snapped a photo of her sailing on lake michigan with us. It was her last sail before she became too sick to go out on the water. I kept her company every week the last four years she was alive and she taught me much about life. she was a great woman. I wish I could show it to you but don't know how unless I email it to you. I will keep 'traveling' in my mind... have to keep ahead of this illness.... whatever it is!! Take care and thank you for your thoughts.

Greg, I went on a gluten free diet for 4 days with a tremendous imporvemnt. Got the results from the antibody bloodwork and the stool smear and they were NEGATIVE! I hadn't eaten much the week before the tests but have been told that shouldn't have affected it. I got frustrated after no advice from the gastro dr so I ate an egg and two peices of tost this morning at 9am. nausea returned at 12 noon and much rumbling in the stomach and guts. explosive diarrhea returned!! now at 9pm the nausea is increased. I have eaten nothing else today. also sinus drainage came back! now the gastro dr wants a colonoscopy. I'm at a loss. He did not talk to me to even let me tell him of my success on the gluten free diet. No advice from him.

I received my book... Illutions.. a reluctant messiah... by richard bach in the mail and plan to read it. Indiana is looking pretty bleak now. It is cold and all the crops are out so the land is barren. trees have dropped all leaves. I have a family of squirrels begging for food now so will spend much of my time at the window watching them gorge on the corn I put out for them. take care, and thank you for your help.

Hi,

I've been puzzling over 'nontropical sprue' sounds more like a type of plant to me or is it 'nontopical' etc. etc. then the penny dropped and I realise it was Celiac Disease.

I'm much happier that it is actually known as a disease as I am all too well aware that 'syndrome' is medical speak for 'Duh!' or I haven't got a clue!

This realisation on my part enforces my belief that you MUST change your life - not just because of my recall of The Kaballa but you are clearly massively allergic to 'stuff' - change of home will mean leaving anything that you are allergic to in your domestic environment - then change your diet radically, start out with only fat free lamb, fish, boiled potato, brocolli, maize corn and maize corn flour, rye and almost any, well washed fruit. No sugar, no milk, no dairy produce and ONLY fresh water.

After 3 weeks - you can iontroduce one item a week - this will establish that to which you are allergic. Whilst doing this each day set aside 3 ten minute slots, sit bolt upright in front of an open window and deep breath in holding your full breath for 20 seconds then breath fully out. Then do 5-10 minutes of your equivalent of Tai Chi.

When you have a chance have a look at a friend of mine's web site - www.Credence.org although I do not go along with much of what Phillip says I can see its value for a huge number of people. You will also enjoy the books including those by Ron Ranson.

I do hope these ideas help as it seems the more conventional approach has not been wildly successful to date and these ideas do not conflict with any hard core medical route you may also wish to follow.

Good luck,
Regards,
Greg L-W.

Whoa, Elaine, sorry to hear about all these problems. Must be pretty bad to make a cancer diagnosis take the back seat. It's nice that the doctors are sympathetic and supportive. You need their help!

At least you can focus on avoiding gluten as one concrete thing. Maybe your nausea will clear up soon.

I saw Greg's recommendations...if you can't move, you can certainly find new direction. What he said resonated with me because I've always been a Gypsy at heart and moved a lot. once I got cancer everything changed (thankyou treatments). I am not able to pack up and go these days. But I did change my life in major ways. Not all of it voluntary mind you. But something I've noticed is that people who are in the business of offering support to others seem to have better results. This is not a scientific fact but my observation.

Find a group of people that have that weird symdrome you have. Learn all you can so you can help others. Maybe it works for that disease as it does (seem to) with cancer support.

Wendy

Hi Elaine,

life don't sound a barrel of laughs just at the moment   but your description reminded me of something! :

I am not Jewish - in fact I don't do this god thing in any form (the more you believe in him the more danger of being a martyre   to judge by the books :) however I have read the major religious texts of our planet and many of the other equally valid (invalid) superstitions. :-?

Somewhere in The Kaballa I seem to recal the admonisment that goes somewhere along the lines of 'if you should develope a tumour or serious malaise, it is best to move to another town'. :o

OK if you take this too literally maybe it is too literal to make sense but how about its actual meaning being 'If you are ill radically change your life'.

I have no idea, nor is it any of my business  :-[, but consider that the challenge you face may currently overwhellm you  :'( - how about adding a completely different challenge - see if you can move to somewhere like Florida, Georgia, Louisianna or some other State radically different to Indiana, for a period, and see if such a massive change of life style helps, making sure to change from plains to the seaside, temperate to warm climate, and a diet of fish and fruit. :-/

I am NOT medically trained and this is NOT advice merely a suggestion based on the simple logic that what doesn't seem to be working too well is your life and style at present.

OK so we can all call to mind instances where this has not been a success as with Ratzo/Dustin Hoffmann in Midnight Cowboy but he had left it far too late :-[.

Consider the success of many who make the radical change and go to Lourdes - maybe the cures are due more to the radical change than any concept of god bothering! 8-)

So what is to lose that doesn't feature on the menu to date :-/? The upside is even if it doesn't work you get a darned good holiday! 8-) ;D

Just a thought. :

Good Luck &
Best regards,
Greg L-W.

This isn't bladder cancer but... Many of you know I've been terribly sick since May. I've lost 53# and can't leave the house much unless I am going for tests and drs appointments. Haven't even been well enough to drive for several months now. In the middle of this they found the bladder cancer and I was lucky enouph to have TaG1 although... 5 cm with an unusually large stalk.

Anyway Tuesday I had appointments with two specialists. Just thought I'd let you all know what is going on with that. The gyno said I need surgery to take cysts and ovaries out but I am too weak to withstand so we will just ultrasound them for awhile so she can track them. She doesn't think it is cancer despite familly history of it. Good deal.

The gastro guy who is supposed to fix my paralyzed stomach says he thinks the underlying problem is a very severe case of nontropical sprue. It is a genetic condition that has suddenly attacked me. My immune system is attacking my small intestine everytime I eat things with gluten in it. For some reason it is very severe in me. I have a cousin who died from a complication of it just last September. She was 17 yrs older than me and was my Godmother! :'(

Anyway he found that along with the weight loss I've lost an inch and a half of my height. My bones have turned to mush. Because of this sprue I have stage 1 kidney failure and this also caused my thyroid hormone to go nuts.

Interestingly... he found two hernias... one large at the incision from the gall bladder surgery another surgeon did in July and another one a few inches down closer to my belly button where the surgeon put his instuments in. They have to be repaired but again I am too weak to have surgery.

At this point we don't know if the damage from the sprue is going to be reversable or stoppable. I feel it is because I've stopped losing weight now. So I have a very positive outlook. I am waiting on the antigen tests to comfirm all this so the guy could be wrong, too. If he is wrong then we start over trying to find what is making me so nauseous. He says if this is what it is... I have a difficult diet to follow and he may have to use prednisone and possibly anticancer drugs to get it under control.

It can lead to intestinal cancer and things like rhuemetoid arthritis as well as other autoimmune diseases. Ugh... I just want to feel better. My Gyno hugged me and the Gasto guy kept putting his hand on my shoulder and patting me so I think they both felt sorry for me. Maybe they felt sorry because my other doctors let it drag on this long. Anyway I hope you all don't mind me dumping this here... This forum has been a Godsend for me. I don't even worry about the bladder cancer because you are all so supportive. thank you, elaine...