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Just Diagnosed...


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#1 Monklady123

 
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Posted 04 June 2010 - 02:39 AM

Hello everyone. I'm new here, and have been reading all the posts for the past several days. I've got a "gluten-free" notebook and I've been taking good notes with all your helpful advice. My story is that I suddenly, about three months ago, got all the intestinal symptoms that you all have described. I thought I'd eaten too much fiber the day before, because I had added all-bran to my morning cereal, thinking I hadn't been eating enough fiber. Then I started getting bad headaches (I never get headaches), and fatigue, and weakness in the morning, and bloating. I finally went to the doctor, thinking I had colon cancer (a worrier by nature, lol) even though most of those symptoms are not present in colon cancer. The first thing she said to me was "okay, sounds like a gluten problem to me...either that or lactose, or both." (after reading about some of your problems in getting diagnosed I'm thinking that this doctor is a keeper!) I said "but I've never had allergies." She said "well, this is not the same thing as an 'allergy', plus for some reason we've been seeing an increase in people with these problems. Let's do the tests."

So here I am. I guess I don't have any specific questions at the moment (since a lot of what I might have asked has already been answered by someone on this board... :) ) Except I would like to know about traveling, since summer is coming up. But I'll ask that in a new thread so the subject title matches what the post is about.

Thanks everyone for all the wonderful advice! It's SO overwhelming at the moment, but so worth it. Even in just the short time I've been trying to stop the gluten I feel better. Not back to normal yet, but definitely better. B)
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#2 ravenwoodglass

 
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Posted 04 June 2010 - 03:20 AM

Welcome. I agree your doctor is a 'keeper'. Traveling can be tricky so ask any questions you need to. I will be traveling in the fall to my DD wedding and we are getting me a room with a kitchenette. That way for the most part I can bring my own food. Ask any questions you need to. I hope you heal quickly.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 quincy

 
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Posted 04 June 2010 - 05:42 AM

Hello everyone. I'm new here, and have been reading all the posts for the past several days. I've got a "gluten-free" notebook and I've been taking good notes with all your helpful advice. My story is that I suddenly, about three months ago, got all the intestinal symptoms that you all have described. I thought I'd eaten too much fiber the day before, because I had added all-bran to my morning cereal, thinking I hadn't been eating enough fiber. Then I started getting bad headaches (I never get headaches), and fatigue, and weakness in the morning, and bloating. I finally went to the doctor, thinking I had colon cancer (a worrier by nature, lol) even though most of those symptoms are not present in colon cancer. The first thing she said to me was "okay, sounds like a gluten problem to me...either that or lactose, or both." (after reading about some of your problems in getting diagnosed I'm thinking that this doctor is a keeper!) I said "but I've never had allergies." She said "well, this is not the same thing as an 'allergy', plus for some reason we've been seeing an increase in people with these problems. Let's do the tests."

So here I am. I guess I don't have any specific questions at the moment (since a lot of what I might have asked has already been answered by someone on this board... :) ) Except I would like to know about traveling, since summer is coming up. But I'll ask that in a new thread so the subject title matches what the post is about.

Thanks everyone for all the wonderful advice! It's SO overwhelming at the moment, but so worth it. Even in just the short time I've been trying to stop the gluten I feel better. Not back to normal yet, but definitely better. B)

I am also recently dx'd. too bad I didnt have a good doctor like you did to suspect this immediately.

I can tell you that I also thought I had cancer, and that axniety has still not gone. i am taking klonapin in small doses if the anxiety gets really bad. still have symptoms also. they say it takes time.... sounds like you are already doing better. best to you...!
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