Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

4getgluten

Front Page Of Wall Street Journal

Recommended Posts

wow Deb--that's cool! how did he get connected with the article?


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

Share this post


Link to post
Share on other sites

Deb, many thanks to your husband for participating in the WSJ celiac story. What a great opportunity to help spread celiac awareness.

Speaking of celiac in the media, in attempts to get more celiac coverage in the media to increase awareness keep in mind that one of the media's primary criteria for selecting topics is business based: how many customers would read, listen, view, etc. When there is an article such as this in a rather prestigious publication and it gets such high visibility (see my earlier post regarding how high it has rated in "Most Emailed" on WSJOnline) it can provide a good "attention getter" when you try to promote coverage in other media. (e.g. I have emailed the article to NPR's "Talk of the Nation Science Friday", one of my favorite radio programs, highlighting it's popularity at WSJ and suggested celiac as a Science Friday segment topic.) We need to keep up the momentum in spreading celiac awareness.

George

Share this post


Link to post
Share on other sites

Deb -- Sorry about hubby. Many thanx! And God bless you.

You both have helped change and bring about awareness for celiac's, people and doctors.

We need to keep up the momentum in spreading celiac awareness.

I agree!

Any ideas?

Don't laugh. Call me silly.

I think I'm going to send the article in my Xmas cards this year.

So people will get 'it'?!

Share this post


Link to post
Share on other sites

Folks: I'm the author of the WSJ article. I just wanted to thank everyone who has written or posted about the story, and to apologize in advance if I'm not able to send personal replies to everyone who's written in. The response has been overwhelming; I've received something close to 150 e-mails since Friday, nearly all of them from celiacs or their family members. I've shared excerpts from a few messages with my editors in NY on a not-for-publication basis, just so they know what kind of effect the story has had.

I also wanted to thank several posters to these boards who replied to my inquiry and were kind enough to spend some time telling me their personal stories. We weren't able to include everyone in the story, unfortunately, nor to give each individual's story the time and attention it deserved, but we did our best given the natural constraints of newspaper publishing. I do hope to do some followup stories, and with luck I'll be able to include some of the material that didn't make the page-one story and to address some of the many suggestions I've received from readers.

I treat e-mail as personal correspondence, so we won't publish any of the notes I've received directly. If anyone would like to submit a letter for possible publication, please direct it to wsj.ltrs@wsj.com.

Many thanks again, and best of luck to all of you.

Best, David Hamilton

Share this post


Link to post
Share on other sites

Mr. Hamilton:

Thank you for taking the time to come to our forum to communicate with us directly to let us know the overwhelming response you have had to your article. We really appreciate what you have done to raise awareness for this disease (as I mentioned in my e-mail to you today), and wanted to reiterate to you just how wonderfully informative your article was. Instead of just doing the "technical, scientific" aspect of this disease, you captured the human aspect of this disease. You truly have a gift.

Kudos to you!

Many thanks,

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

David-

Again--Thanks so much for your interest in Celiac. Articles like yours share responsibility for the raising of awareness, which leads to more individuals being diagnosed. Thank you! -Jen


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

Share this post


Link to post
Share on other sites
Hi All :) My husband is "Mr. Martin" and I am sure the WSJ editors in NYC cut some addtional info about him out as his interview with the author was about 40 minutes long. As many of you know, Mike has been plagued with other health problems over the years that stem from his misdiagnosed celiac.

We were very excited to be included in this story and we were caught off guard that it was finally published on 12/9 (the interview happened over a month ago). The photo is from our 2004 25th Wedding Anniversary. Deb :D

Thanks, Deb!

We're ALL appreciative of your, and Mike's, efforts - as well as everyone else that was involved in bringing this story in the Journal (as those of us here call it on the "Street", lol) to fruition.

I know that you've written about Mike's "other" celiac-related problems, but would you mind giving us another short rundown of them?

Bill


Diagnosed with Celiac March, 2005: Positive endoscopy, blood tests and biopsy. Gluten free since March 2005.

Retested Jan. 2006: Negative blood tests: "Results do not support a diagnosis of celiac disease. Serological markers for celiac disease were not detected."

Results for 2006 endoscope/biopsy pending.

Ignorance is preferable to error, and he is less remote from the truth who believes nothing than he who believes what is wrong.

-Thomas Jefferson

Give me the storm and stress of thought and action rather than the dead calm of ignorance and faith. Banish me from Eden when you will but first let me eat of the fruit of the Tree of Knowledge.

- Robert Green Ingersoll

Share this post


Link to post
Share on other sites

I'm one of the people that David interviewed while he was working on his article. That was in early October. He has done a great job in telling our story, and it is just fantastic that it was a page-one story.

Thank you so much, David. It is a terrific article.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

Share this post


Link to post
Share on other sites

I was interviewd, too - and am also pleased with the resulting article.

Kudos, David.

Gina


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

Share this post


Link to post
Share on other sites

The article said celiac disease can lead to Type 1 diabetes....that's wrong, isn't it....shouldn't it be Type 2 diabetes??


CAROLE

-------------

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.

Share this post


Link to post
Share on other sites

Type 1 diabetes is correct. Type 1 is an autoimmune disease wherein antibodies are produced which attack the Islets of Langerhans in the pancreas leaving the body unable to produce insulin. The proportion of celiacs among type 1 diabetics is higher that the population as a whole, and the reverse is also true. Recent research is now suggesting that untreated celiac can trigger other autoimmune diseases, including type 1 diabetes.

I was finally diagnosed with celiac at age 46. I developed type 1 diabetes at age 31, but had been having celiac symptoms for years before that. Perhaps if the celiac had been recognized when I was in my twenties, and I had gone gluten free then, maybe I would not have developed the type 1 diabetes.

Type 2 diabetes is not an autoimmune disease. The Islets are still there, but they may produce insufficient insulin, or the other cells may resist it. The result in both cases is high blood sugar, which causes all of the complications associated with diabetes.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

Share this post


Link to post
Share on other sites

Peter--Thanks for that explanation. I had read many times about the link, but never really understood the "how's and why's".


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

Where can I get a copy of this article? I would love to read it. Thank you


Diagnosed 11-11-05 after 3 months of major symptoms, including 2 hospitalizations and 7 ER visits for dehydration and syncope. Otherwise, I had all "normal" blood tests and major scans. During those 3 months, lost 20 pounds, all my muscle tone, and ultimately could not walk for 2 days. Spent 6 days during the second hospitalization hooked up to IV and STILL passing out IN BED due to malnutrition with doctors staring at me AS IF it was all IN MY HEAD

Other related symptoms:

Osteopenia

Hypothyroidism

Gluten Ataxia - three "nodes" recently found in my brain (thought I had MS)

Muscle weakness

Fatigue

Chronic Constipation

45 pound weight gain since going gluten-free!

gluten-free since 11-11-05. Cannot eat bananas, potatoes, or spinach. Recently reintroduced yogurt into my diet and able to tolerate plain yogurt with sugar.

HATE the diet but psychologically tolerating it for my health.

Share this post


Link to post
Share on other sites
Where can I get a copy of this article? I would love to read it. Thank you

The article is posted on the 1st page of this thread. :)


Rachel

Share this post


Link to post
Share on other sites

Update -- I brought the WSJ article with me and asked my new GASTRO DOC (treats celiac disease) if he had read it. He said NO I DON'T READ THE WSJ. So, I gave him a print out.

I just got off the phone with my cousin that works as an art director in NYC in advertising for the medical industry (RX companies)... She said DOCs don't read the WSJ (unless they have a business brain), but the EXECUTIVES from all the RX companies DO. She said when they read it and see there is a huge need to find the magic pill and all the $$$$$ in it for them to cure us, it will get their attention.

Just a thought...

Share this post


Link to post
Share on other sites
I think I'm going to send the article in my Xmas cards this year.

So people will get 'it'?!

This is a really neat idea. Maybe I'm silly, too :lol: .

But, oh, wow, this was an awesome article. Thanks so much, George and David, this is so cool. I will print this out and copy it for everyone I know...

Hugs, Stef


Stef

Next goals:

Results for 2011:

1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting

August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)

gluten-free since 07/21/2004

Shermans Dale, PA

Share this post


Link to post
Share on other sites

I am so happy that this made the front page! I haven't been able to look at the second article if anyone can share it...

I was interviewed as well - he did a great job on the story. My mom has diabetes type 1, and my doctor thinks I got celiac from her because of the autoimmune relation, even though she does not have celiac. I am a little nervous that I may develop DT1 because of that - she did not start to see pancreas trouble until she got pregnant, and I have not had kids yet. You never know what will happen when your immune system is overactive!

And I hope Mr. Hamilton will forgive me, but I thought it was interesting that he himself had been diagnosed with celiac and therfore has been through what we have with the diet. However, he was found not have it later when he had a biospy and went back on gluten without problems. So he has been there and back!


Blood work positive

Dx with IBS 5 years ago

Dx with Celiac and gluten-free since 6/17/05

Share this post


Link to post
Share on other sites