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darlindeb25

Found A Paper On The Net--so Informative

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This is the best paper I have ever read with definitions of celiac disease. He tells why some heal so well, why some do not. The different degrees of celiacs, why some are so easy to diagnose and why some are not. I printed the paper--be aware, it is 14 pages long and the tiniest print. I am sending the paper to my parents.

My dad has had stomach problems for years, as long as I can remember. He retired and has been sick since then, even before. He had terrible diarrhea, went from 260# down to 135#. The doctors did a exploratory surgery to see what was going on and his entire small intestine is calcified, completely, along with all of the blood vessels that attach to the large intestine. They told him that a person can live without their small intestine, yet they were afraid to remove it because of the involvement of the blood vessels. They had never seen anything like it before. At that time he was not gluten-free yet, he had tried it and was still sick, so gave up. That was 4 yrs ago. Finally he did go gluten-free for good in November of 2005. He does feel better, yet still has bouts of diarrhea, not as bad as before. He has gained some of the weight back, maybe up to 170#. My dad is not the big guy I remember, he is very pale, frail looking. It's so sad. As I was reading this paper, it kind of explains so much.

Please read it and let me know what you think. Dr. Murray is originally from Ireland, the paper was written in 1996, and is so very informative.

http://www.bayareaceliacs.org/widening-spectrum.htm

Deb


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Hi Deb. I read part of it, but painkillers for an injured shoulder muscle have me seeing double. I printed it off to read later, as the part I have read really looked good. Thanks for the article!


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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Deb - Thanks for posting this. I've only read a little bit, and it looks very interesting. I copied the text and pasted it into a word document. I'm going to increase the font before I print it. Thanks for the tip.


Karen

gluten-free since March 05

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Thanks for posting this. This one is definitely easy to read ...

As one of the old folks here, I was looking for healing info ...

"Older patients may respond to the gluten-free diet but not completely heal.

Why not? Well, they may be healing fully further down the small

intestine but not in the area near the stomach, which has been exposed

to the most gluten for the longest time. However, it is only in the

area near the stomach that you can effectively take small intestine

biopsies. So a biopsy might not show the true extent to which healing

has occurred."

I'll be checking this one out further too. marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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I was very impressed with the article and was hoping others would benefit too. You are welcome!!!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I was very impressed with the article and was hoping others would benefit too. You are welcome!!!

I'm impressed as well, thank you for posting it.

I just wish they would put out a proper "print" version as you would need a magnifying glass to read it printed. I tried pasting it in Word 2000, and made the print larger, but then lost lots of words, so didn't work that way :(


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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That was very good. Thanks :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Interesting read. Thanks for posting it. It'd be nice to see it updated, now that a decade has past.

I had two quibbles:

1) The treatment of lactose intolerance - lactose itself does not act as a laxative (it's digested by intestinal bacteria which cause the diahrea and gas characteristic of lactose intolerances) and it's not a "few celiacs that are also genetically-predetermined to never be able to break down lactose" as they reference a 5% of caucasians with lactose intolerancr number (in reality, the percentage is higher, and the percentage increases, naturally, with age, because it is not a black and white issue). Ironically, this led me to find this article suggesting that a positive H2-lactose breath test should be a trigger for testing for celiac disease.

2) Short shrift to neurologic complications. "Thankfully these are fairly rare," is totally insufficient for covering it.

But I think it's quite useful that he point out this one (my own emphasis added):

"In the anger stage you may be angry at the delay in getting diagnosed, or angry at why you got this disease ("God, why did you give this to me?"), anger at the food manufacturers for incomplete ingredient information, or anger at the difficulties of following the diet." I think this stage may be the longest, perhaps because we find ourselves justifying that anger towards each other.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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This Thread caught my attention because I live in Iowa and was excited to read more about Dr. Murray. I found out he's no longer at the University of Iowa Hospital but is now in Rochester, MN at the Mayo Clinic.

Here's what his bio says:

Dr Joseph Murray obtained his medical school training at the National University of Ireland in Galway where his interest in gastroenterology was born. He subsequently trained in internal medicine and GI in Dublin. He then moved to the University of Iowa where he completed GI fellowship training with a focus on esophageal motility working with Jeffrey Conklin and James Christiansen. His major focus was the elucidation of the role of nitric oxide and signal transduction of neuromuscular coordination in the esophagus. While focusing on the esophagus at the University of Iowa for ten years, he then moved to the Mayo Clinic in Rochester, Minnesota where he has run the Esophageal Motility Laboratory now as a co-director with Dr. James Wise. His practice focuses on swallowing and esophageal motility disorders. He directs the multidisciplinary swallowing program and maintains a special interest in celiac disease.

Iowa's loss is Minnesota's gain I guess.

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