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Undiagnosed


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17 replies to this topic

#16 Guest_Obedientmuse_*

 
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Posted 01 January 2006 - 02:11 PM

Hi all,

I'm new to this site, but not to living wheat, milk, tomato, nut and sugar free.

Quick history:

I've been living on a restricted diet for 25 years, worked with a nutrionalist who didn't know what she was doing, really, for almost three years. She had me living on yogurt and rice cakes, but couldn't help me find foods that didn't either give me heart burn or make my stomach blow up the size of a basket ball.

After years of condemning myself for eating too much, when it was obvious I wasn't and still over weight, I finally gave up. I went to a naturopath. He was a quack, but got me on the right path of process of elimination diet and supplements so I could have the energy to deal with this. I was also exhausted constantly and drank coffee (caffeinated) and relied on fruit sugar, breads and sugar to keep me going. I thought I couldn't process meat so stayed clear of that, when all along I wasn't getting enough protein and my hair began to fall out. I'm telling this is slightly out of order but it's all the same.

I have studied, trusted my choices, and have trusted myself, (since I am the only one to deal with the consequences). I read, by suggestion of a reliable doc, The Diet Cure. I have been doing the amino acid therapy suggested in that book (taking supplements on a schedule) and not eating those foods that bother me and taking vitamin B's in regular doses all to my benefit. I now can monitor my blood sugar better (extreme hypoglycemic, which is connected to my hypo-thryoidism that went unacknowledged for years although I was tested many times and my results came back within "normal" ranges it took a huge cyst to grow and block my throat/air way before someone would put me on thyroid meds. It changed my life!)

No matter what the tests say, (I was once tested positive for cancer and instead of listening to the doc and falling apart I changed my life) I say listen to yourself. We all can't live exactly like one another, but take clues and hints to how our lives can be lived to their fullest. I don't want to sound preachy. I know what I know through trial and error, antidotes and education. Dr. Andrew Weil is another great resource. He suggested that we each our better healers than any outside source. We can seek advice, suggestions and helpful information to heal, but ultimately we heal ourselves. I feel my body is helping me to live a life of accountability and integrity. I do what I say and it shows in my food. When I am out of integrity with myself my body revolts! That's between my body and me.
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#17 Nancym

 
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Posted 03 January 2006 - 04:11 PM

I think Dr. Fine is finding out that the human race is maladapted to eating wheat and that's going to make a lot of people uncomfortable... think of the argriculture industry. You thought Pharma was big bidness... well, agriculture is probably lots bigger. Add to that the food processing industry and boy, we're talking about a lot of GDP.

As far as Dr. Fine's credientials they're very impressive. He has his CV online. He is published, has published and is publishing again.

It took American doctor's 10 years to believe, understand and assimilate the reality of H. Pylori into common practice after it was discovered and published. These guys don't change quickly. The current "gold standard" test, which misses a lot, is 50 years old. And, according to Dr. Fine, only catches celiac disease when it is in the end stage. Good thing they don't wait until cancer metastisizes before they call it cancer and treat it!

I'm happy Dr. Fine is going to publish his findings on gluten sensitivity but don't expect any major changes in your physician's attitudes for many, many years to come.

Ultimately it is up to each of us to figure it out. I think there are far worse things in life than giving up eating certain foods.

Right now we're the luckiest people to be alive when we are. We have the Internet to research our issues and figure them out for ourselves. If we left it up to the typical doctor, we'd be spending our short, sick, miserable lives begging for help and walking out with prescriptions for antidepressants.

Edited by Nancym, 03 January 2006 - 04:17 PM.

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#18 CMCM

 
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Posted 03 January 2006 - 05:40 PM

I think Dr. Fine is finding out that the human race is maladapted to eating wheat and that's going to make a lot of people uncomfortable... think of the argriculture industry. You thought Pharma was big bidness... well, agriculture is probably lots bigger. Add to that the food processing industry and boy, we're talking about a lot of GDP.

As far as Dr. Fine's credientials they're very impressive. He has his CV online. He is published, has published and is publishing again.

It took American doctor's 10 years to believe, understand and assimilate the reality of H. Pylori into common practice after it was discovered and published. These guys don't change quickly. The current "gold standard" test, which misses a lot, is 50 years old. And, according to Dr. Fine, only catches celiac disease when it is in the end stage. Good thing they don't wait until cancer metastisizes before they call it cancer and treat it!

I'm happy Dr. Fine is going to publish his findings on gluten sensitivity but don't expect any major changes in your physician's attitudes for many, many years to come.

Ultimately it is up to each of us to figure it out. I think there are far worse things in life than giving up eating certain foods.

Right now we're the luckiest people to be alive when we are. We have the Internet to research our issues and figure them out for ourselves. If we left it up to the typical doctor, we'd be spending our short, sick, miserable lives begging for help and walking out with prescriptions for antidepressants.




I agree completely! Never underestimate the resistance within the medical community (fueled by big pharma concerns) to admit to a solution that involves dietary/lifestyle changes and not meds. And when you consider the reach of the grain industry (where do you start? Almost everything we eat is wheat based or contains some form of glutin!) which would/will do everything in its power to discount any suggestion that grains are bad for us.

As for Dr. Fine, I am putting a lot of faith into his method because I believe him to be a pioneer. I have dealt with this before, with my son. Briefly, my son has a condition called hyperhydrosis, which is basically overactive sweat glands, which in his case led to continually dripping hands. It was a huge social trauma for him. All doctors wanted to do was have him smear dangerous steroidal creams on his hands (didn't work), or get expensive botox injections in his hands (lasts a few months for about $800 per time), and various other stupid, useless band-aid treatments, none of which worked much. I researched like crazy and discovered a doctor who was a specialist in endoscopic lung surgery, and he had been lured into doing endoscopic surgery to snip a particular nerve (sympathetic nerve) which is responsible for the overactivity in various sweat glands, so now he does both. He lectures on this all over the world, and has published a few things, but still hasn't gotten wide attention and the surgery doesn't have much acceptance for some reason. This surgery is highly controversial and not accepted or known in the medical community as a solution, and unfortunately there are a lot of not so trustworthy doctors cashing in on the surgery as well. But my research and checking led me to believe this doctor was a true pioneer ahead of his time, and he'd done this surgery hundreds and hundreds of times, so I put my son into his care and the surgery was successful and totally changed my son's life for the better.

I called every doctor in Sacramento who would/should have known about his condition and and not a single one knew anything much (sounds like celiac!!) and no one had even heard of the sympathectomy my son got. I was astounded, because this was not totally new. So my opinion about the diagnostic abilities of most doctors has been formed by this unpleasant experience in solving my son's problem.

I think it's pretty sad that all of us can easily find out and learn more about celiac disease than most doctors seem to know. What has bothered me, too, is that if you see a doctor and mention the possibility of celiac, if they don't know about it they just dismiss the possibility....they don't go off and research it so they DO know about it and thus help you. Very disappointing, but this is why I have taken my diagnosis into my own hands and am going the Enterolab route to verify a few things. What those tests will tell me should be enough, I think. I don't need the expense and danger of a biopsy etc. Fact is, I feel rotten a lot of the time, I'm fairly certain why, if this test verifies even just the intolerance and presence of the genes, then I'll embark on a totally serious 100% gluten-free diet because I know the possible consequences of continuing to eat gluten. I think I'll be happy with the information I'll get via this method. And besides, why should I be concerned about having the stamp of approval from a pack of doctors who know LESS about celiac than I do??? I'll take the expertise of a doctor who has dedicated himself to this disease. Certainly Dr. Fine seems to know far more than most of the others.

When my mother was fortunately diagnosed 40 years ago, knowledge about celiac was incredibly scarce and doctor ignorance was understandable. Today, with the internet and sharing of knowledge that is possible, there is simply no excise for this continuing ignorance.

What was it, about a hundred years ago that doctors didn't believe in the existence of bacteria because you couldn't see them.....
:unsure:

Another thought about Dr. Fine....If he had done his studies for a short time, whatever he postulated would have been dismissed and probably wouldn't have been accepted into the major journals. At this point, he has 5 years worth of data to back up his ideas so they can be taken more seriously.
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CAROLE

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Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.




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