What Is Your Response When People Say.....
Posted 14 August 2010 - 02:07 PM
So, how about it - what should I say?
Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"
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!)
Posted 14 August 2010 - 02:13 PM
Posted 14 August 2010 - 02:21 PM
Posted 14 August 2010 - 02:39 PM
Posted 14 August 2010 - 03:03 PM
"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 14 August 2010 - 03:21 PM
Posted 14 August 2010 - 03:50 PM
Posted 14 August 2010 - 04:01 PM
"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."
~Ralph Waldo Emerson
Posted 14 August 2010 - 04:50 PM
I need some witty, snide, smart or funny remarks to say to people when they say, "It could be worse" when I tell them I have Celiac Disease. Yes, of course it could. A few months ago we all thought I had cancer. Of course I am happy that was a misdiagnosis, but I would love for people to go gluten-free for 1 month and tell me how grateful and happy they feel!!! Especially since I was asymptomatic before and now I have ALL these GI issues. And I'm still mourning my Krispie Kreme donuts!!!!!
So, how about it - what should I say?
oh no- im so sorry - but i DO say it to myself all the time... and i would probably say it to someone else-
for me anyways- it's way better than Diabetes or Lupus or MS...
BUT- YOU deserve some major understanding tho- cause Lymphoma is HUGE.. and "iron infusions".. that doesnt sound delightful...
it is a big pain in my a tho- & NO LIE- i thought to myself at work today: "i could TOTALLY down a DOZEN Krispy Kremes right now!!!!!!!!!!!!!!!!!!!"
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx
Posted 14 August 2010 - 05:16 PM
Extremely allergic to shellfish, Aspirin & Ibuprofen
Posted 14 August 2010 - 05:58 PM
BUt , I want to tell you on the Betterbatter.org site there is a krispy kreme clone & its good!!!! Plus many more yummy recipes!
Posted 14 August 2010 - 05:59 PM
Me too. After so many years of health problems I'm genuinely grateful that most of it was gluten-related and can be changed by adjusting my diet.
I think you are pretty new to this still. I remind myself all the time that it could be worse.
@Raven - Diagnosed by autopsy is pretty good as far as snide/witty!
By the way, the Kinnikinnick frozen donuts are quite good. I finally founds some after Mom raved about them. So much for my weight loss efforts this week.
Posted 14 August 2010 - 06:05 PM
I'm in the camp that did think it was something far worse for a long time. I'm also one that didn't heal right up, but has damage that requires continued infusions/shots.
I still think it could be worse--a lot worse.
It can get easier and the people on this board are an enormous help and support!
Posted 14 August 2010 - 06:27 PM
When you get to be a seasoned celiac it will not matter what others say or think--- you will be happy & healthy& in the end that is what truly matters. By then these uninformed ( putting it kindly) people may be suffering with an issue of their own. What goes around comes around..
No kidding. I remember just last year seeing the "gluten-free" label on a co-worker's jar of organic peanut butter (he's not a celiac, just extremely health-conscious to the point of being annoying on occasion) and thinking "oh, here we go again, now everything has to be gluten-free. What's next?" And of course then my own celiac disease went from latent to active that same year. Boy, did I eat crow from that one...
Posted 14 August 2010 - 09:28 PM
Them: It could be worse
Me: I know, I could have your thighs! [insert: haircut, ugly shirt, etc.]
You should get these steroids I get.
When anyone tells me, you should go on steroids, I say no thanks, I'd like to keep my hips. Long term steroid use should be a last ditch effort. People don't understand how steroids can rob them of calcium and destroy their joints.
-IgE to oats and rye
-Diagnosed with Colitis via endoscopy/colonoscopy Oct '10
-Following FODMAP diet since June '10, Positve SIBO test, July '10
-Diagnosed non-celiac gluten intolerant June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)
-Osteopenia June '10
-Gluten free since July '09 & Soy free since December '09
-Dairy free since '06
-IBS & Sjogren's diagnosed '05
-RA diagnosed as a toddler
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