I have a good friend that I met in college who was DX'd when he was a baby, so he knows nothing but the gluten-free lifestyle. I had known him for 8+ years before I was diagnosed, and my husband and I would make comments (to each other, not our friend) like:
* I heard that you can grow out of this disease, so
* It's been so long since he was diagnosed, he should just try something and see what happens
* No pizza, beer, bread???
My how we've come so far...
Blood test May 25, 2005
Positive diagnosis through Endoscopy June 13, 2005
gluten-free since then...
Yep,I know what you mean-it's a learning curve for all our family when my hubby was dx 18 months ago.
He was very ill and the docs told me they were looking for Crohn's diease or Coeliac disease.I went home and googled the 2 diseases-and promptly decided that my husband had to have Crohn's as he was far too ill for it to be 'just an intolerance to a food '!(Oops! )
Do you know,I have never met another coeliac-maybe they're hiding.I suppose it's not the first thing you'd tell someone.
I am however a coeliac spotter!
This involves knowing someone who has complained of maybe their IBS,(it could be celiac disease-I'm thinking)
Or a friend who is alway's tired,and looks anaemic and underweight!
It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill
Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)
No--I had never heard of Celiac until shortly before I was Dx. (Hard to believe now!). I have not personally met anyone with it, but my husband's aunt has an in-law with it. I just heard about that last week.
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
I am fairly suspicious my mother in law has it....all her symptoms cropped up suddenly in 1967 just after a serious hysterectomy....she developed psoriasis, migraines, and what she calls IBS, lots of other things that are pretty suspicious of celiac disease. My mom's celiac disease was triggered by her hysterectomy, too. BUt with my mother in law, she simply refuses to acknowledge the possibility of celiac disease because she doesn't want to change her diet. For several years now she has really been chained to her house because of a reluctance to get too far from a toilet. Some people you just can't tell anything.
------------- Enterolab 1/2006 IgA & tTg Positive DQ2-0201 (celiac) and DQ1-0604 (gluten) Casein IgA positive Mom has 2 celiac genes Both kids have a celiac gene. Lots of celiac disease in my family, both sides.
My granddaughter (who is 7 years old now) had celiac disease since she was one and her mother, my DDDIL was the one that suggested that I get tested a year and a half ago (I am now 60). I am gluten intolerant and carry the gene. The DDDIL put together some symptoms I was having and thought maybe it could be celiac. The doctor test came back negative so I was tested through Enterolab (full panel including gene testing) and it came back positive. I am grateful to her for putting this all together as I feel so much better these days and know that in my latter years, I probably won't have so many troubles as my elderly mother is having now. She (at age 87) is now trying the gluten-free diet to see if that will help her. She started it recently and says she is feeling somewhat better already. It was easier for me when I went gluten-free as I had been cooking and baking for my granddaughter for several years so I just expanded on what I already knew and went from there. I don't buy a lot of gluten-free food anymore other than bread, rolls and crackers etc, I just buy regular products from the store that are gluten-free. I think you can think this thing to death which isn't good, you just need to incorporate it into your life and just get on with it. Barbara
I had a friend from college had been diagnosed 2 years before. The funny thing is in college we went on a mission trip overseas together and used to say we must have picked up some parasites there Little did we know we did have the same disease...
My friends son was in and out of hospitals until he was 2 years old. He was diagnosed with Celiac disease. I used to leave the hospital after visiting hours and say if I could just take that away from him so that he would be healthy. One year later I was diagnosed and one year after that they said he really didn't have it it was another autoimmune response going on. Karma
Many years ago I worked with a woman and both she and her daughter are Celiac. I remember thinking "how weird". I also worked with a woman who was allergic to citric acid, which is in almost everything!
At my current position, there are two other people who are gluten intolerent - that I know of anyway.
Ev in Michigan
GFDF since 8/20/05 Negative Bloodwork ~ Dr. encourages me to trust my "Gut Reaction"
I knew one person who had it before me- my friends mom- and she was diagnosed about 1 year before me. But since my diagnosis, i have noticed that almost everyone i have told has said "Oh, i just heard about someone who has that - my friend's sister's husband's brother's...etc"...u get the picture. In my experience, knowledge of this disease is really starting to spread and my friends now get so excited when they meet other celiacs- they cant wait to tell me about it!
my boss has it. she has had it for years and has been a tremendous help to me. its great to have a support system. turns out my uncle has it now too. after he heard i had it - he demanded he have the test - and yep, he's got it. he had digestive problems for years. pretty sure my sister has it.
My symptoms started in the summer after spending weekends boating in the Delaware River. My doc thought I'd picked up some ugly bug or something and put me thru a course of Flagyl while we waited for my blood work to come back.
My daughter's fiance started having mild gut symptoms that progressed over the next year till he finally took himself to the doctor who suggested gluten intolerance. He thinks I "witch cursed" him!! haha
After my diagnosis, I'm convinced that my sister's lifelong eczema and skin/internal allergies and my brother's occasional eczema are gluten related... but neither will be tested!!
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!
I knew a woman ten years ago that had Celiac, she was rake thin but still cooked with wheat flour and ate things made with wheat. She lost all her teeth and would lose weight if she ate wheat but she never said it endangered her health. I think she really didn't know how dangerous it was because doctors are no better versed in Celiac now than ten years ago.
I thought there was no way I had it because In the last 5 years all the weight I gained. But then I lost lots of teeth too. It was my sister who impressed upon me that two of her friends have it and one I knew was a pretty big guy and I should have tests done.
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006
When I first moved back to GA almost 10 years ago, I got back in touch with an old friend of mine from the high school days, she said that her mother had celiac and didn't eat anything with gluten. I thought this woman was nuts. After hanging around with them for a while, my friend kept telling me that she thought that I had Celiac. After I had two miscarriages I reluctantly tried the diet but I didn't know about all the hidden glutens and I wasn't that vigilant with it. After I got pregnant with my daughter, my OB/GYN told me to go off the gluten free diet because "it was bad for the baby"... I listened to him and ended up having a very tough life threatening pregnacy.