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Well I Finally Did It


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26 replies to this topic

#16 Marz

 
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Posted 27 August 2010 - 11:42 PM

Well done, so glad you had a great experience!
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

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#17 ravenwoodglass

 
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Posted 28 August 2010 - 02:58 AM

Thanks guys. I am so glad that the US is finally getting more Celiac savvy. I have always hoped that my struggles might help others. I never could have done this if I hadn't taken that first very hard step a year and half ago and sought out a good therapist and psychologist. I know there are a few of us who struggle with the fears that this disease brings along with the severe physical reactions. Although my issues come from much more than just the Celiac my reactions play a big part in them. We can overcome so much. My son says I am the strongest person he knows but I sure didn't feel that way a year ago. The support of the wonderful folks on this board help so much but sometimes we need to get that little bit of extra help with these struggles. I am so glad I finally did have the strength to get that help, even though it took me 7 years to admit I needed it, and I hope the others who feel 'locked in a box' by this disease and it's reactions find the strength to do the same.
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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)

#18 missceliac2010

 
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Posted 28 August 2010 - 05:48 AM

You go! Good for you! My first eating out experience was very scary. I was so paranoid, and kept "checking myself" internally with every bite I ate. As the meal continued however, I still felt good! It was so exciting!

I now hit In-And-Out Burger frequently to get their protein style burger and dedicated fryer french friend. As far as sit down places are concerned, I'm in love with Outback Steakhouse. They have a special menu, and seemed to know their stuff!

Isn't it exciting to feel a little bit "normal"? Congrats!
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Heather C.
July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

#19 GlutenFreeManna

 
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Posted 28 August 2010 - 10:09 AM

Good for you! I didn't even wait that long to try eating out, but I paid for it by getting glutened several times even at places with gluten free menus. Once I finally found a place that is consistently safe my husband wanted to go there every week! I had to convince him that we will go on special occasions or when I don't feel like cooking. I'm afraid to push my luck by eating out too often, but there really is a good variety now (at least if you live near a city).
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#20 lucia

 
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Posted 28 August 2010 - 05:51 PM

Ravenwoodglass, your posts have made a big difference to me. And I'm sure that's true for many people on this board. You often have just the right thing to say - sometimes comforting, and other times honest (when that's needed). I think that often the people who have struggled the most are the most qualified to support others on similar journeys.

I'm glad good things are coming back at you.
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#21 Superfudge

 
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Posted 28 August 2010 - 06:09 PM

Ravenwoodglass, your posts have made a big difference to me. And I'm sure that's true for many people on this board. You often have just the right thing to say - sometimes comforting, and other times honest (when that's needed). I think that often the people who have struggled the most are the most qualified to support others on similar journeys.

I'm glad good things are coming back at you.


Yes, what lucia said! Very true.

I went to Olive Garden for my dad's birthday the other night. They have a gluten-free menu, and our server was great. i asked him about cross contamination. He asked how bad my "allergy" was, and when I told him that any gluten would "ravage my intestine," he was extremely helpful and reassuring! :P I think I may have to keep using that phrase... And I did appear to come out unscathed, as well.
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Diagnosed by biopsy and blood test August 11, 2010.
GI quote: profound atrophy of the villous.
Scared me to death. Still very new at this.

#22 Lynayah

 
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Posted 29 August 2010 - 03:43 PM

You are an inspiration to us all!
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Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

#23 sahm-i-am

 
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Posted 29 August 2010 - 05:13 PM

Congratulations Ravenwoodglass! I'm so glad you took the plunge.

We went to PF Changs last night and it was so good and yummy! Totally without fear of being glutened and had a great time with friends. Just like before diagnosis!

Doing the happy dance for you and your family!! :D
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Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
Uhhh.....yeah!
DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!
DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.
Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

#24 GFinDC

 
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Posted 29 August 2010 - 06:32 PM

That's great RWG! kind of like opening a new door. Things are getting better for us. And there may be more of us to enjoy the results too! Probably a lot more people will be diagnosed now that the press has taken some interest in celiac disease. It's all good! :-)
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#25 chasbari

 
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Posted 29 August 2010 - 07:00 PM

Yay! Good going... someday I may too eat at a restaurant again... one step at a time. Thanks for blazing a trail.. helps to hear what works and what doesn't.
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#26 bigbird16

 
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Posted 01 September 2010 - 04:53 AM

Way to go, Ravenwoodglass!!Posted Image
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Migraines, ataxia, peripheral neuropathy, anxiety, paranoia, joint pain, vivid nightmares, exhaustion & lethargy, brain fog, bloat, GI issues--all gone or significantly reduced since dietary changes were made

Gluten-free (Nov. 2008), dairy-free (June 2009), soy-free (Aug. 2009), all-grains-and-grasses-but-rice-free (Nov. 2011); double HLA-DQ7

"'Always remember, Bilbo, when your heart wants lifting, think of pleasant things.' 'Eggs, bacon, a good full pipe, my garden at twilight....'" (The Hobbit, animated movie, 1977)

#27 sandsurfgirl

 
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Posted 04 September 2010 - 11:09 PM

I am so excited for you! Happy for you! Proud of you!! Such a big step in conquering your fear, conquering this disease and regaining your freedom.

I am very sensitive. Got glutened from kissing once. Got glutened from running my fingers through my hair and then eating crackers without washing hands first when I had wheat conditioner in my hair.

But I eat out a lot. Many times per week. And I've only gotten glutened at a restaurant once. I call ahead when I can. Tell them what I can't have and remind them about CC.

It is possible!! I'm so thrilled for you.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!




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