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Never Let Anyone Tell You This Isn't Serious

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31 replies to this topic


bonnie blue

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Posted 09 November 2011 - 02:43 AM

Hello to my friends,
Last year in September after being ill for sometime I was diagnosed with Celiac. We took everything very seriously and began our gluten free life. All was well until December when I started losing weight again and feeling really bad. To make a long story short I saw different gastros, I was told it was all in my head, that I must be cheating and eating gluten, and my personal favorite, that I had worms. Finally after months and months I found a gastro who took me seriously. He did start me on Entocort to control the big D and I did feel a little better, however the weight loss continued, fatigue, and then it became hard to eat, and I began to have trouble swallowing. He decided it was time for another endoscopy, well the results came back yesterday, and I was diagnosed with Adenocarcinoma of my stomach. It is not my intention to scare anyone but to let anyone who has any doubts that Celiac disease is not serious that it is, it defenitely is.
In just 3 short hours we are off to the medical center to meet the with doctors so that they can stage my cancer, and come up with a plan to beat this. I guess I just wanted to share this with my friends who really understand what it is like to have Celiac, and the obstacles that we face everyday. I will keep you all in touch, take care of yourselves, and God bless.
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Just takin it one day at a time :)

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Posted 09 November 2011 - 02:50 AM

So sorry to hear this. Please let us know how you are doing.
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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)



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Posted 09 November 2011 - 03:48 AM

Really sorry to hear your news. Thinking of you.
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Bubba's Mom

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Posted 09 November 2011 - 05:45 AM

I'M SO sorry to hear about your DX. I can't for the life of me understand why Dr.s don't take us seriously when we tell them something's wrong! We know our bodies better than anyone.
I had colo-rectal cancer at the age of 46, stage 1. I knew something was wrong, even though they say most people have no idea they have it. It took me going to two different Dr.s and several visits with each before I was finally given the scope I needed for a DX. :angry:

Good luck to you in your treatment. I hope it's just stage 1. I found that once I had a DX they moved pretty fast in treating it, so be ready for a bit of a whirlwind.
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Posted 09 November 2011 - 05:59 AM

Oh, Bonnie! Thank you for sharing this. Good luck with the doctors today.
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"Children in a family are like flowers in a bouquet: there's always one determined to face in an opposite direction from the way the arranger desires."
~Marcelene Cox


"Earth laughs in flowers."
~Ralph Waldo Emerson







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Posted 09 November 2011 - 06:55 AM

I'm so sorry to hear this. Good luck today, and let us know if we can help.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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Posted 09 November 2011 - 08:10 AM

I'm so sorry to hear of your illness. Please don't hesitate to ask for support here if you need it. ((( hugs )))
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Posted 09 November 2011 - 09:25 AM

I hope it goes well for you now that you have a diagnosis! As for those other doctors, I hope someone can call them on your behalf and inform them of the cause they missed so they will be better informed of the possibilities in the future.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.



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Posted 09 November 2011 - 11:00 AM

Sorry to hear of your diagnoses! I'm glad you were able to find a doctor who took you seriously!!! Good luck at the doctors!
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Posted 09 November 2011 - 11:13 AM

I'm so sorry for your diagnosis. Best of luck to you!
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Posted 09 November 2011 - 11:19 AM

Oh Bonnie, I am so sorry about your diagnosis. Stay strong and fight, and yes, please let us know how you are doing. {{{hugs}}}
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 09 November 2011 - 12:19 PM

Best of luck to you! Thank you for sharing and keep us informed.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.



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Posted 09 November 2011 - 12:52 PM

That really stinks! But it seems like you have a good attitude. Maybe all of us who have had to stand up to people who "think it's all in our heads" have learned to be stronger than the average person. And that strength will see you through. You'll be in my prayers.
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gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!





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Posted 09 November 2011 - 01:17 PM

Hugs and hugs and hugs for you! I pray that it is at an early stage and you get healed fast. There is so much they can do for cancer nowadays. It's not like before where there were just a few treatments. My dad has cancer and they are doing amazing things to treat him. Hang in there and come here for support when you need it.

We celiacs have to stick together and lift each other up.
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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!


bonnie blue

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Posted 09 November 2011 - 07:07 PM

Just an update, home finally. The cancer is in the early stages and has not spread to any other parts of my body. I will have two months of chemo, then surgery to remove my stomach, they will make me a new stomach from my small intestine, then after I have healed from the surgery two more months of chemo. The doctors are very optimistic about a full recovery. I did find out from the doctor today that they will not do any radiation, because of the Celiac disease, they told me it would be too hard on my body, because radiation causes the Big D, wow you learn something new everyday. I go into my surgeon on Friday so they can put in a port in my chest for the chemo, and then the chemo will start next Tuesday. I am in a very positive mind set at this point, and I will beat this cancer!
Thank you all so much for your support, this forum is like my second home, thank you again and I will keep in touch.
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Just takin it one day at a time :)

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