Comments on: MY CELIAC IS NOT YOUR CELIAC!

By: grace

grace — Fri, 07 Jun 2013 17:27:46 +0000

Biopsy NOT the gold standard, I agree. Had the same experience as you. DNA test help confirm it for me. Actually going gluten free was best proof for me. The negative biopsy caused me more harm in my head (not believing how sick I really was)

By: Debra

Debra — Mon, 13 May 2013 15:59:36 +0000

Jennifer, my mother almost died before we found out she had celiac. If it hadn’t been for someone else saying they thought their child had it, and the symptoms sounding like my mother’s, she might have gone undiagnosed until she died. At the time we found out, there wasn’t a lot of gluten free products. Thank goodness for more information on television and websites about celiac. Wishing you the best. I plan to keep up with your experiences and website.

By: Shelly

Shelly — Sun, 12 May 2013 11:55:40 +0000

I just wanted to say I was so moved by your story on your Bakery website. My son was diagnosed 3 years ago at the age of 11…after 10 years of me knowing something just wasn’t working right with him. I won’t go into the details because, as you well know, every Celiac story is unique. I was really excited to see you will be selling wholesome, GMO free mixes online, when they are available, but was immediately deflated when I saw you have almond flour in the mix. My son doesn’t have a tree nut allergy, but my daughter does, so I don’t want to take the chance of having her exposed to the flour or pancake mix by mistake. If you devise a mix without the dreaded tree nuts, I’d be happy to purchase!

I’ll keep watching your website. Congratulations on the bakery, and for taking your struggles public. You are one strong lady.

By: Lisa barrentine

Lisa barrentine — Thu, 09 May 2013 23:14:45 +0000

Jennifer I have been suffering for 13 years trying to find answers on why I am so sick . Everyone thinks I am crazy. My question is I am trying to find the right doctor here in Tampa Florida who deals with celiac and candida to try to heal my stomach and get rid of the overgrowth candida I have . Would you know of any doctors here or would your doctors have any good contacts . I am desperate anymore . Been to the hospital 2 times in the past 2 months . They cannot find anything wrong. I have been diagnosed by some homeopathic a with leaky gut and candida they keep overwhelming me with pills. They had me on 90 pills a day .

By: gayewelton@yahoo.com

gayewelton@yahoo.com — Mon, 06 May 2013 19:07:02 +0000

I totally agree with you! It is very frustrating for people not to understand that just a little bit hurts even if there are no symptoms–especially if that person says they themselves have celiac disease!

By: Cookie's Mom

Cookie's Mom — Tue, 19 Feb 2013 01:59:01 +0000

It’s so hard as the mom of a kid with celiac disease to see him struggle even though we feed him as well as we can.

Hang in there Jennifer. It’s easy for others to criticize, but not so easy to be as brave and outspoken as you. You’re doing a lot of good for a lot of people by speaking the truth about your experience.

By: Karen

Karen — Fri, 15 Feb 2013 23:12:30 +0000

Suzanne. There is a very savvy doctor who specializes in this disease and he educates other doctors on what Celiac is and isn’t. His name is Dr. Tom O’Bryan. He has told me personally that celiac Disease is a blood disorder and only a portion of the population are affected in the gut. Yours is obviously affected elsewhere in the body. You can google him and listen to his radio interview where he discusses it. God bless you

By: Karen

Karen — Fri, 15 Feb 2013 23:05:26 +0000

Jennifer. I just saw your Fox Files episode and was so gratified to see a story that discussed Celiac Disease. Your blog mentions that some Celiacs seem fine after diagnoses and going gluten free while others still struggle. I agree and am one of the strugglers. I was diagnosed in 2000 and currently have 30 or so foods i have been told to avoid besides wheat gluten. I have fibromyalgia, Tin poisoning and many other diagnosed problems all relating to the immune system.

After 13 more years of pushing doctors for tests and answers i had a positive test for chronic lyme disease complex and am now researching treatment. I am curious if any other Celiacs out there have been tested for Chronic Lyme Disease Complex? As scary as it sounds there is a train of thought that untreated Lyme disease could cause fibromyalgia, food allergies, MS and many other diseases. I’m just curious if you or others have been tested or treated. God bless you and I pray your efforts produce genuine results for all Celiacs.

By: Linda

Linda — Tue, 12 Feb 2013 15:30:09 +0000

I have to live completely grain free, no potatoes, no quinoa. It SUCKS. I have also found that I can trust NOTHING processed in any way…ok, well I do buy vegetable milks. I do a whole foods vegan and gluten free diet. I get angry too! Especially with my relatives and friends who continue to pretend that I have some choice in this. I just watched some of your interviews and read some of your story for the first time today. I’ve been in tears. Thank you! Oh, and Dr. Drew is an idiot! He was a total ass to you! I also stopped watching Blue Bloods when they let you go for complications with celiac.
xo-L

By: An

An — Wed, 06 Feb 2013 06:58:34 +0000

Thank you Jennifer for telling your story and all your efforts at raising awareness. I also went undiagnosed for 17+ years. Today even with a positive confirmation from endoscopy and biopsy and HLA-DQ8+, doctor’s still act skeptical. They start talking Crohn’s, IBS, etc., anything but Celiac. It is very strange. The medical community appears severely biased against the possibilty of Celiac in patients, even to this day. And this is even at major Boston area teaching hospitals affiliated with Harvard Medical School. In addition for any doctor to practically ignore a positive diagnosis is beyond ridiculous and very dangerous. And so is CBS’ attitude as well, shame on them. Keep up the great work and thanks again.