Comments on: Weekly Health Tip: Understanding Celiac Disease

By: Debbie Cohen

Debbie Cohen — Mon, 30 May 2011 17:29:38 +0000

Hi Deepak:

I second what everyone else is saying. I was diagnosed with Celiac about 7 years ago. It seems like everyone is jumping on the Celiac bandwagon these days product-wise so I agree, it’s very important for people with Celiac to only eat products made from fresh food they cook themselves or from a facility that is certified gluten free. I have the type of Celiac that shows up as iron-deficient anemia and other nutrient deficiencies as opposed to the kind where people experience immediate discomfort. In the past I’ve made the mistake of eating things I thought were gluten free only to start feeling sick months later. So many people follow and respect your opinion so I am glad you are getting the word out.
Jules- thank you as well for your efforts. I will definitely be signing this petition and I will mention it in my blog as well

Debbie

Thank you!!

By: Lynda

Lynda — Thu, 12 May 2011 16:58:16 +0000

My mother was diagnosed over 30 years ago with Celiac Disease. It took her doctors a long time to figure out what was wrong with her. It was a Chilean women internal medicine doctor that figured it out – after a biopsy showed that her villi were all laying down and not absorbing any nutrients. She had lost 30 lbs at that point. She is 90 now, and has been able to control it with a strict diet. Once in a while she eats something that contains gluten and she knows it within minutes! It hits her hard and fast. We are all used to reading labels and looking for the “hidden” ingredients such as “food starch”, “malt”, or pure vanilla extract. Fortunately, she has always eaten a lot of fresh vegetables and fruits, but she was raised on homemade bread as well. Perhaps it has bothered her somewhat all of her life, but it didn’t hit her badly until she was older. She is 90 now – and still complains about not being able to eat sour dough bread! She has always been small – so a 30lb loss was huge for her! She weighs about 97 lbs now!

It is so nice to be able to see labels that indicate gluten free these days! Life is much easier for her – and the gluten free cake mixes are much better than she has ever been able to make!

As far as we can tell, she is the only one in the family affected with Celiac Disease. We have all been tested. She is of Slovenian decent – no Irish – so that distinction doesn’t apply to her. So – we don’t know where it came from or if it is hereditary. Today we often hear of friends that have been diagnosed with Celiac Disease, but we also know it often goes undiagnosed or misdiagnosed. My daughter is a doctor and is often consulted by friends concerning this disease. We also wonder what symptoms might be a result of this disease. Two that you mentioned – anemia and arthritis – could apply. It’s very hard to know these things!

By: Jules

Jules — Tue, 10 May 2011 01:41:56 +0000

Thanks so much for spreading the word on celiac disease. The more people know of the disease, the more people will be diagnosed and begin to heal. Unfortunately, because of the myriad manifestations of celiac, many physicians still miss the diagnosis, and it becomes incumbent upon the patient to urge testing.
I would like to point out another less obvious wrinkle in the life of someone with celiac or gluten sensitivity. As you mention, we must avoid gluten-containing foods entirely. Forever. Cross-contamination is a serious concern.
The FDA was to have established a federal definition for “gluten-free” in food labeling by 2008, but they have not done so to date. We launched 1in133.org to bring attention to this serious oversight.
Last week in Washington, DC we built the World’s Tallest Gluten-Free Cake and hosted the 2011 Gluten-Free Labeling Summit. In conjunction with this event, we obtained nearly 9,000 petition signatures in only 6 weeks, emploring the FDA to finish the task of setting a definition for “gluten-free.”
To learn more, sign the petition, view photos of the over 11 ft tall cake, or read articles covering the event from such media as USA Today, The Washington Post and the Huffington Post, please go to http://1in133.org/index.php.
~jules shepard
co-founder, 1in133.org
founder, JulesGlutenFree.com

By: Laurie

Laurie — Tue, 10 May 2011 01:11:49 +0000

Thank you for the great article! I was diagnosed 6 years ago, after suffering for over 20 years! Doctors told me I was bipolar, depressed, ect. I blew up like a balloon, ached all over, woke exhausted, had severe mood swings, horrible menstral cycles, seizures and brainfog! Within 72 hours of no gluten, and no dairy, I started to feel better. Took a good year to have great days. I am very strict with my diet! So excited every time a new gf item comes out!

By: Ingrid

Ingrid — Mon, 09 May 2011 21:05:19 +0000

Thank you for this article that makes celiac disease more visible to others. Still not understood by all, but known more than some 20 years ago. Symptons are various and difficult to recognise.There are a lot more different wheatfree products available, at least here in the Netherlands. For me I bake my own bread from Teff, known for some years and it provides in many the body needs without regular food.Even while vegetarian. This is different for others following a diet. Listening to your own body what is best.It is a hereditary disease, once diagnosed in the family, others with symptons are recognised earlier.Following the diet gives you a healthy life as any other.Being aware of the importance of food with the right energy. I agree with Jaime other products are giving allergy problems, one of them is milk/lactose.
After almost 15 years diagnosed celiac I am healthy and my asthma and other symptons are all gone.
Many new developments and more different kind of products available for celiac diet.
More attention to the problems people are facing makes life more enjoyable. Thank you very much. Ingrid

By: Jaime

Jaime — Mon, 09 May 2011 16:11:15 +0000

Hi Deepak,
First off, let me just say THANK YOU! for everything your wisdom & words have added to my life personally and the healing & empowerment of our world soul as well! I was diagnosed with Celiacs close to 9 years ago and I agree with you that there is an abundance of misinformation and dangerous cross-contamination happening in the fast food market. I also have come to recognize that just because something is “gluten-free” does not mean it is any better for one’s health than other junk foods. Replacing wheat with potato or corn starch or white rice flour and tapioca does not make for a nutritious meal. I also think it’s important for people to realize that the damage from Celiacs can be longterm and affects way more than just digestion!! I experienced horrific bouts of fatigue, disorientation and mood swings, as well as eczema and asthma and other low immunity symptoms & allergic reactions. At the age of 25, I even lost my vision for 6 months due to severe nutrient malabsorption from damage to my intestinal lining (celia). I was told that basically my body was shutting down and sacrificing non-essential tasks, such as seeing!!! Thankfully I am on the mend and using a strict regimen of enzymes, probiotics, vegan vitamins, organic herbal teas and supplements for extra adrenal & thyroid support and lots of greens & nutrition supplements!!! So, now I am super careful about everything I eat and pretty much do not frequent restaurants or eat any processed food unless I know it is certified gluten-free. I am also finding that in having Celiacs, I am much more prone to other digestive and food allergy issues (especially to proteins) and no longer eat dairy or meat and monitor corn, eggs, nuts & sugars very carefully. Anyway, thanks for addressing Celiacs Disease and for always bringing attention and necessary care to so many of the major issues in the world!!! Sincerely, Jaime Frodyma

By: Sole

Sole — Mon, 09 May 2011 15:07:03 +0000

I’ve been diagnose with CD 5 years ago after 12 years of symptoms. It definitely changed my life for better! I would also like to add OAT to the list of grains that may contain gluten ( by coss-contamination), It’s also very important to know that even if you don’t have all the symptoms and even if your body doen’t “react” to gluten or some of the grains that contain it, it’s still absolutely important to follow the diet to avoid future complications and diaseases. Fortunately there are more and more gluten free products available in the market this days.