Never Let Anyone Tell You This Isn't Serious
Posted 09 November 2011 - 02:43 AM
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.
Posted 09 November 2011 - 02:50 AM
"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)
Posted 09 November 2011 - 05:45 AM
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.
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.
Posted 09 November 2011 - 05:59 AM
"You have problems. There are not enough paper clips, and then you've got world hunger. Your problems are somewhere in between." -DPR,III
Celiac.com - Celiac Disease Board Moderator
Posted 09 November 2011 - 06:55 AM
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!
Posted 09 November 2011 - 08:10 AM
Posted 09 November 2011 - 09:25 AM
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.
Posted 09 November 2011 - 11:00 AM
Posted 09 November 2011 - 11:13 AM
Posted 09 November 2011 - 11:19 AM
"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
Celiac.com - Celiac Disease Board Moderator
Posted 09 November 2011 - 12:19 PM
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.
Posted 09 November 2011 - 12:52 PM
gluten-free since June, 2011
Can't eat soy, corn, or foods high in salicylates.
Nightshades now seem to bother me too.
BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!
Posted 09 November 2011 - 01:17 PM
We celiacs have to stick together and lift each other up.
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!
Posted 09 November 2011 - 07:07 PM
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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