Celiac Disease: A Marathon…Not a Sprint

celiac marathon
helping celiacs

Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.

Today’s 30 for 30 blog post is for: Lisa, whose passion and advocacy oozes for her 3-year-old daughter with celiac.

This post is not so much “helping” anybody, but is more of just a shout out. I’m a pretty passionate guy about a lot of things and when I see that passion in other people, especially when it comes to celiac, I just friggin’ love it and want others to experience it too.

So it’s Friday…I’m on my way to get a haircut…and I want to end the week on an uplifting note, because lord knows we need it.

It’s all you Lisa…

Hi – just wanted to say thank you. The post about the mother of a celiac just helped me – or struck me. I want to find her and tell her I’ve fought and am fighting the same battle…my daughter was diagnosed at 22 months. (And I hesitate to say mother of a celiac because that mom is, first, the mother of a CHILD. Let these kids not be defined by the disease…but let’s be vigilant in our cause to not let the disease be pushed aside….WHAT AN INCREDIBLY FINE LINE TO WALK).

I know you’re busy, but I’d like you to know that not one post you create goes unnoticed by me. Hey, my daughter only turned 3 two weeks ago; we’re still very new to this. I’m still in the throws of PTSD over what it took to get my child diagnosed and how even my current GI specialists still get things wrong when they discuss her with me and say things like – itchy skin/rash because of celiac disease? Sounds more like an allergy….SOMEONE ALMOST HAD TO HOLD ME BACK. And BTW, we were misdiagnosed by a Yale GI specialist before the second hospitalization – YALE!!!!!!! They called it C-Diff after looking at a stool sample and sent us on our way….then the pedi told us possible cystic fibrosis – then, soon, she was laying on an x-ray table and they were looking for a cancerous mass. I can’t even begin to tell you. Then again, I know you already know.

Look, I firmly believe I’m supposed to put a voice to this thing called celiac disease. My kid has it, and I’m not going to just let this happen. I’m meeting w a 5K race producer to put a 5k run/walk together for awareness and funds for research, and you know what?? Good for me. And I know I’m rambling to you – it’s just that I find myself needing to be understood or heard – or that someone out there gets it. I almost find myself being strangely excited when the rarity comes along that understand where we’ve been and are. And if I hear one more person call it an allergy…

And you know what really sucks? Things like….at the Easter egg hunt on Saturday, where there was an aluminum-wrapped chocolate carrot that I didn’t know if there was “glue” in, my 3 year old toddled up to the Easter bunny that was there and gave it away so her belly wouldn’t hurt. THAT SUCKS. And I want to punch someone.

And it sucks at Halloween and it sucks that people will drop everything for a peanut allergy *not to belittle that population’s experience* but think that Celiac Disease is some new fad that really means nothing.

And I can’t begin to know what next September will be like when she enters pre-k and the journey will really begin. (I feel like I need to volunteer to make all the cupcakes for everyone’s birthday for the next 20 years just so my daughter won’t feel left out….) and on, and on, and on.

I’d be lying to you and to myself if I didn’t say that this is a marathon – not a sprint. I know what I’m up against. BUT – I’ve strapped on my running sneakers….and I’m ready. I think!

Please – keep up your work. Please. You’re teaching me daily.

I will just say one thing: Your daughter is in fine hands and your journey, while tough, will be a rewarding one.

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28 thoughts on “Celiac Disease: A Marathon…Not a Sprint”

  1. oof..this post made me get all choked up. Not only because your passionate fight is beyond admirable, but because I wish there were millions of people like you, Lisa. Your little girl will grow up stronger and better prepared for anything life throws at her because of her mommy. You rule! That is all. 🙂

  2. Hi – I’m in CT!!! …. your kind words make me want to scream that WE CAN, AND WILL, DO THIS!!! Thank you!!!!!!

  3. Lisa…ROCK ON MAMA! If we don’t stand up for our kids, who will? Now to give you a vision for the end of the marathon: I visit my beautiful, healthy, 29 year old celiac daughter and sit at her kitchen table. She feeds me a healthy, gourmet, gluten-free meal that is so delicious that I can’t believe it is GF. She lived through birthday treats, high school pizza parties, out-of state college and now has a biology degree. And you know what? I think kids that go through something like this are actually at an advantage. Because they know what it is like to have gone through some difficulties and have compassion and understanding for others. With you in her corner your daughter will be OK.

    1. Irish I love it! Just finished my comment, saw yours and the link. You make me so happy to see you do this again and again. You’re incredible! 🙂

  4. Lisa I have to say this is the first post in awhile that’s made me cry. I am very fortunate and blessed to have been able to have had kids who are now adults. Raising children and all that goes with being the mother is a quite a responsibility in and of itself. The memories of day one on…never leave you. It’s a marathon in and of itself, ever-changing and evolving. Your passion and dedication is wonderful. Don’t get me started on docs or GI specialists…I myself was diagnosed way too late after a lifetime of suffering as a little girl on. The world needs more mothers like you. From one momma lion to another, you rock!

  5. To everyone who took the time to read what I wrote, and respond…. I could cry just for that alone. I really appreciate everything that was said. I wish you all health – for you and the ones you love; esp those w Celiac. (Thank God for Gluten Dude, too, huh?? When I think I’m never going to get people to believe me that my daughter will actually get very sick from gluten – or that celiac disease isn’t some made-up joke, and I’m frustrated, and I’m angry, and really really upset, I see that he’s posted some new GF product or something good thats happened in the GF world and think that I can keep plugging along…). And you will, too!!

    XO – Lisa
    aka @Limapal444

    1. Thankful for Whole Foods

      ((((Hugs))))for you Lisa ! Way to go for everything you are doing for your daughter. And, a 5k? STANDING OVATION COMING YOUR WAY!

  6. Lisa, I’m glad you’ve found Gluten Dude, and the celiac supporters on this page. He’s posted a letter I wrote to my daughter, so I might be that mom. I recognize, and sympathize with your struggle. Yes, you will bake every treat for the next 20 years, but your daughter will thank you! My Mother’s Day card from my 8 yr old started off with describing me as the “muffin maker” (for M). You keep up the fight, we’re running along beside you. And your girl. 🙂

  7. Lisa-

    You rock. Being a mommy is such a hard thing by itself but add celiac and that cranks it up to an insane level. You know what, you can do this, you are doing it…this is what you were meant to do. Raise awareness, fight. Fight for that little girl of yours that will need you more and more as she gets older. You got this.

    xo-
    Jersey Girl
    —————————————————————————–
    “It is hard to be brave,” said Piglet, sniffing slightly, “when you’re only a Very Small Animal.”

    Winnie the Pooh

  8. Hey Lisa!
    Even though it’s tough hang in there. While we crave being “normal” at times there is a freedom that comes from not being so. When I was diagnosed with Celiac I realized there was no way I was ever going to “fit in” or blend in or be normal so I quit trying. I started dressing the way I wanted to and quit trying to downplay my personality. While this disease stinks most of the time there are moments where being different isn’t a bad thing…
    I hope this made some sense… hang in there and keep fighting the good fight.

  9. You know this is very sad. The news is now reporting thanks to Peter Gibson, a professor of gastroenterology at Monash University has done studies to suggest people that have Gluten Intolerance (NOT CELIAC DISEASE) are making there stomach problems up in there head, and it has big Coverage http://www.forbes.com/sites/rosspomeroy/2014/05/15/non-celiac-gluten-sensitivity-may-not-exist/ http://www.huffingtonpost.ca/2014/05/14/gluten-intolerance-fake_n_5327420.html, http://www.refinery29.com/2014/05/68067/gluten-sensitivity now considering this FODMAP diet was created by the guy who was trying to prove Gluten Intolerance is made up http://en.wikipedia.org/wiki/FODMAP as you can see Wikipedia FODMAP was created by Dr. Gibson and that should give people pause for believing this study.

    However once again the Main Stream Press is trying to push the idea that JUST 1% of Celiacs need a Gluten Free diet and are thrilled to eliminate Gluten Free off the store shelves. Just look at this article by this Chinese Man who doesn’t use any facts and titles his article in a very MEAN SPIRITED WAY TITLE: Being gluten free is dumb—and gluten intolerance may not even exist by Casey Chan

    Let us face the facts I am sure this study is inaccurate because the guy doing this study Dr Peter Gibson is the creator of the FODMAP diet and it only makes sense that he is going to be bias in this article, plus we do not know if any of the Gluten Free food that he was giving to his patience was CROSS CONTAMINATED and just likes Celiacs Gluten Intolerant people cannot take CROSS CONTAMINATION of there Gluten Free Foods. This study annoys me because this guy Dr Peter Gibson of Australia is trying to promote his own diet and claim it works better then GLUTEN FREE. Gluten Free diets take time to heal the GUT and according to this report it was only people who said they were convinced they were Gluten Sensitive no claim of seeing any doctor to confirm Celiac or Gluten Intolerance. http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html

    My opinion is the wheat industry knows this Gluten Free is working. I have Gluten Intolerance NOT CELIAC and this Dr. Gibson with his FODMAP diet is going to tell me with a diet he created that Gluten Intolerance does not exist, WHO IS THIS GUY TO MAKE THAT CLAIM. I know my body more then my Dr. and yes My doctor has told me after many tests that I do have Gluten Intolerance and when I tried GLUTEN FREE I did feel better.

    Everyday if you go on Google News there is an article that says Gluten Free is a lie and MORE THEN ONE. The heartless wheat industry and Dr Gobson in Australia in my opinion are both doing everything they can to destroy a Diet that works and here is the main stream heartless media once again trying to push Gluten Free off are shelves and get people sick http://www.mnn.com/food/healthy-eating/blogs/new-study-gluten-sensitivity-is-all-in-your-head

    Much of this Anti Gluten Free is the Wheat Lobbyist who are trying to convince those that are Gluten Free That having a Gluten Free diet is crazy when people know there bodies more then there Dr. Sadly I think Gluten Free will be NO MORE and we see how the Main Stream press will take joy when others suffer who know that Gluten Free is not the AKINS DIET.

  10. Sorry here is the article from the Chinese man Casey Chan who title for gizmodo.com is “Being gluten free is dumb—and gluten intolerance may not even exist” http://sploid.gizmodo.com/being-gluten-free-is-dumb-because-gluten-insensitivity-1577178094 Here is the deal. Anyone can tell that the man doing this study Dr Peter Gibson is promoting his FODMAP Diet http://en.wikipedia.org/wiki/FODMAP and is going to be bias with this study. SO BEING GLUTEN INTOLERANT IS ALL IN ARE HEADS. However it makes one laugh when Dr Gibson says that Gluten Intolerance is a lie YET promotes his own FODMAP diet as being the cure and the Main Strem media leaves out the FODMAO was created by Dr Gibson. Boy the main stream PRESS IS REALLY TRYING TO TAKE THE GLUTEN FREE DIET FOR THE WHEAT LOBBYIST RIGHT OFF THE SHELVES AND WE ARE SUPPOSE TO BELIEVE DR. PETER GIBSON CREATOR OF THE FODMAP DIET.

    Give me a BREAK. This study is a joke in my opinion. Just make people sick Main Stream Press. YOU ARE NO LONGER A GOOD SOURCE FOR NEWS INFORMATION AND THIS MAKE BELIEVE FODMAP DIET proves Dr Gibson is really just trying to promote his diet period.

  11. Lisa, your letter really touched me because of my own mom’s constant support and advocacy for me after I was diagnosed with celiac. No one else in my family has it, but the house has become nearly 90% gluten free. She even went gluten free with me (after discovering a gluten sensitivity). I’ve written on my blog (in these exact words, ironically enough) that celiac is a marathon and not a sprint, but it is parents like you that keep us running. Without my mom, I wouldn’t be nearly as strong and determined to advocate for my health. I know your kid will receive the same gift. Stay amazing!

    Casey 🙂

  12. Casey, thank you so much. And again, thank you all. YOU stay amazing, strong girl. Keep up the blog!! (When she can read, I’ll tell her about it!!). Xxo

  13. Lisa, your post really resonated with me. My 5-year-old daughter went through a year of misdiagnosis from a Cornell GI who refused (yep, refused) to do a celiac test. A year of crying, pain…I can’t think about it again. I will say, today she is 11-years-old, and her tests have normalized. I learned to bake all over again, went gf with her (so she could learn how to pattern from me: ordering in a restaurant, speaking up when she needs to, reading labels,) ran the pancake breakfast at her elementary school so there would be gf options. We brought (and still bring) all her food to birthday parties…I am not going to tell you it’s easy. Nor that your child won’t feel left out sometimes. But there is a light at the end of all of this: a healthy, strong child. I always tell my daughter that her celiac will make her stronger. And it has. You sound like an amazing mom. You’re going to rock this with her! Get friends involved too. You’d be amazed at the kindness your community will show when you speak up. One year one of her friends had a gf birthday cake at her party for everyone so my daughter wouldn’t feel left out. You’re so right: it’s a marathon. And you clearly have the stamina for this. XO

  14. Lisa, your letter was touching. Your little girl is lucky to have a strong, caring mom. She is going to be okay. I am one year diagnosed and I work in a school with children who have mega allergies and two children with Celiac, a kindergartener and a 5th grader. These children are happy, understand the disease (they help me) and are well-adjusted. They know exactly what they can and cannot have, and never share food. They too have strong, wonderful moms like you. These moms bring their girls the GF cup cake and the GF pizza to school when parties are going on to keep their girls safe, and no one thinks anything of it. Your daughter will grow up only knowing GF and will educate her friends (just like these girls have done). She will be ok. Ignore the uneducated (I know it is frustrating), keep the faith and stay strong. Hugs to your little one.

  15. Liza, I just want you to know that you don’t stand alone in this effort and this fight against the sheer negligence and oblivion of doctors today. We’re a family here, and our efforts would not go waste, and shall surely bare some fruit. Stay hopeful! 🙂

  16. Hi Lisa! Kudos to you for having such a great spirit! I have Celiac and I’m a Mom to three kids, two of which have Celiac Disease as well. We are close to the three year mark since diagnosis but it took a full twelve years to get to that point. Never underestimate the power of a pissed off Mama!!! Every time my daughters encounter ignorance, insensitivity, or just plain old crappy days, we channel all that negative energy into positive energy and a determination to make things better. We’ll get there! Wish I lived near you so we could work together! Go get ’em Lisa! Warrior Moms are a force to be reckoned with!

  17. For Gluten Dude & Everyone In The Community:

    I thought I’d copy/paste one of Jane Anderson’s Celiac Disease About.com’s most recent posts, because it contains a very nice summary of the 4 celiac disease medications currently in development:

    “Celiac Disease Drugs in Development
    Potential Celiac Disease Treatments May Be Available in a Few Years
    By Jane Anderson
    Updated May 14, 2014

    There may soon be a pill to treat celiac disease.
    Right now, the only available treatment for celiac disease is thegluten-free diet. But that may be changing. In a few years, it’s possible that people diagnosed with celiac disease will have the option of one or more celiac disease drugs to treat their condition.
    At least four different drug developers are vying to have the first approved product to treat celiac disease. The drugs in development take different approaches: One is an enzyme designed to break down the gluten protein, one is a vaccine to help desensitize you to gluten, the third is a medication intended to help prevent leaky gut, and the fourth actually binds to the gluten molecule in an effort to escort it safely from your body.
    It’s not clear which of these four will win out. But there’s a good possibility that at least one of them will be approved by the end of this decade … if not much sooner.
    Here’s a rundown of the three main celiac disease drugs in development:
    • Alvine Pharmaceuticals’ ALV003. Alvine has progressed farthest in its quest to bring to market a drug for celiac disease, and ALV003 has received Fast Track designation from the U.S. Food and Drug Administration, meaning it could be approved more quickly. In addition, Alvine has teamed with global biopharmaceutical company AbbVie in a $70 million deal that could give Alvine the funds it needs to move the drug much closer to FDA approval. Alvine’s approach involves a potent digestive enzyme that can help break down gluten before your immune system reacts to it. Phase IIa trials of ALV003 as a celiac disease treatment showed promise, and the company said in hopes to begin its Phase IIb trials late in 2012. However, ALV003 will not allow you to eat unlimited amounts of gluten; at best, it’s expected only to protect againstgluten cross-contamination in foods.
    Learn more about ALV003: Alvine Pharmaceuticals’ Potential Celiac Disease Drug
    • Alba Therapeutics Corp.’s AT-1001. This drug, which also holds FDA Fast Track designation, is catching up with ALV003 and could beat it to market. AT-1001 suffered setbacks when it failed to produce good results in an early clinical trial, and pharmaceutical giant Shire Pharmaceuticals pulled out of a deal with Alba Therapeutics on the drug in 2009. However, Cephalon Inc., another major drug manufacturer, acquired the rights to AT-1001 in early 2011, pending results of more trials. Those trials have produced positive results, and as of February 2014 Alba announced it would move on to Phase 3 trials, the last phase before approval. AT-1001 is designed to induce your body to close the junctions between the cells in your intestines, thereby reducing or eliminating the problem of “leaky gut,” which may start an inflammatory cascade. However, AT-1001 likely won’t prove to be a panacea for celiac disease, either — at best, it’s expected to protect you against small amounts of gluten.
    Learn more about AT-1001: Alba Reports Promising Results for Celiac Drug Trial
    • ImmusanT’s Nexvax2. ImmusanT is pursuing a vaccine approach to celiac disease treatment. ImmusanT is holding Phase 1 trials in Australia, New Zealand and the U.S. to see if Nexvax2 is safe and potentially effective at larger doses. The drug is designed to induce renewed immune system tolerance to gluten. That theoretically would allow people with celiac to consume gluten products again. Nexvax2 is genetically tailored to work with people who carry particular celiac disease genes — specifically, the DQ2 gene, present in up to 90% of everyone with celiac disease. It wouldn’t work if you don’t have DQ2, although ImmusanT plans development of vaccines that would work with other gene combinations.
    • BioLineRx’s BL-7010. This drug, which was slated to enter clinical trials in late 2013, has been shown in mice to reduce the immune system response that leads to intestinal damage and villous atrophy in celiac disease. BL-7010 actually binds to the gluten protein, which seems to decrease the protein’s toxicity. Then the drug — with the gluten molecule attached — passes through the digestive system and is expelled from the body in stool. BL-7010 hasn’t been tested in humans so far, although researchers performed lab experiments with biopsy specimens from diagnosed celiacs and found the drug may help to calm immune system reactions specific to celiac disease. BioLineRx needs to perform more trials to show that BL-7010 is safe before it can move on to clinical trials to see whether the drug actually works. Still, like the other potential drugs, the company believes that at best BL-7010 will just protect against cross-contamination; it won’t allow you to eat large amounts of gluten.
    Again, it’s not clear which of these celiac disease drugs — if any — will make it to market. But if and when one does, I expect diagnosis and treatment of celiac disease to skyrocket, as both consumers and physicians become far more aware of the condition.”

  18. Kimberly Kuehl

    All I can say is we all get through it but I can’t tell you how upsetting doctor visits are, I’ve received 3 new diagnoses within 2 weeks and yet I was diagnosed with celiac 3 years ago, I just don’t get it. They really don’t fully understand disease and don’t want to deal with it. Treat symptoms as they come on. I have a feeling your child will become strong, fully aware of disease and not let others bother her in any way, along with you! Kim

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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