and now, a word from my mother about celiac disease

When we were kids, it seemed like my sister was always sick. By the time we were in high school, my brother and I were convinced that she was the best con artist of all time, regularly convincing our parents that she just couldn't go to school, and could she please have some pudding.

Well, as it turned out, my sister has had Celiac Disease her entire life. It further turns out that our mom has it as well, so my brother and I were both tested a couple of years ago. The results were negative, so my gluten-rich diet of beer and bread was not affected, but my mom and sister — especially my sister, who is so sensitive she can't even use the same knife as I do if my knife has touched anything with wheat in it — have had to significantly change their lifestyle to adapt and survive.

My mom did a ton of research, the way you do when you're a parent and you find out that your child has a chronic disease, and ended up becoming something of an expert on Celiac Disease. She eventually took the knowledge she gained from that research, turned it into advocacy for people who have Celiac Disease, and recently started a campaign to increase awareness of what is called "The #1 Disease You’ve Never Heard Of."

I'm going to turn my blog over to my mom for a little bit, so she can tell you more. Take it away, mom.

Thanks, Wil. You're the best son in the world. Don't tell Jeremy and Amy I said so, but you're my favorite. [Note: The preceeding sentence may have been added by Wil for comedic effect. Everything that follows is entirely true, and written by my mom.]

As you know, since your little sister Amy and I were diagnosed with Celiac Disease 6 years ago, I have become a passionate activist to raise awareness about CD. Today I am taking my crusade to another level with Not Even A Crumb™ (www.notevenacrumb.com) FAQ: Celiac is the #1 genetic autoimmune disease in the world and remains the most misdiagnosed. It is estimated that 3 million Americans are affected and 97% don’t even know it…yet. There is no cure, no pills, no drug therapies. The “cure” is a Gluten-Free diet. The only disease in the world completely controlled by diet is also: “The #1 Disease You’ve Never Heard Of”.

I’m sure we all remember how sick Amy was for years before her diagnosis. By the time she ended up in the ER, she had lost over 20 lbs and couldn’t eat anything but potatoes and rice.  Until that day, none of us had ever heard of Celiac Disease, nor was it mentioned by any of the parade of Doctors who had entered her life at that point. Many thought she was into drugs or was anorexic. After her diagnosis, we connected the dots backwards, and realized that we’d both suffered for years from the now well-known symptoms of Celiac. How different those years might have been if we’d only known that the “cure” was a Gluten-Free diet. And after 6 years on a strict Gluten-Free diet, we are both healthy and symptom free.

Two years ago I began volunteering with the Celiac Disease Foundation. I also created Not Even A Crumb™: “Easy to Digest Solutions for Living a Gluten-Free Lifestyle”. Now we have partnered with CDF to produce the 1st nationwide PSA to raise awareness. (we already have a commitment from CBS to air it!)The path to diagnosis didn’t have to be such a convoluted maze for Amy and me. The information was available, if we’d only known where to find it, or if our doctors had known to look for it. A national PSA will help unravel that maze, raise awareness, increase diagnosis and save lives. More information about Celiac and our fundraising campaign is just a click away: www.notevenacrumb.com

So there you go. I told my mom that she had an opportunity to reach a lot of people here, so if you feel inclined to share this post and the information included in it with your friends and family, that would be awesome.

Oh, one more thing: I've seen at least one local news report that misrepresented gluten-free diets as some kind of fad diet, like South Beach or Atkins or something people are trying to lose weight. It infuriated me that this station was so lazy and misleading, and many angry letters were written. Eventually, one of the stations ran a correction on their website (not on air, heaven forbid) that included a letter from my mom. If you hear some local newsmodel presenting GF diets as some kind of silly fad, instead of a medical necessity that saves lives, please point them to my mom's website, or the Celiac Disease Foundation.

126 thoughts on “and now, a word from my mother about celiac disease”

  1. http://en.wikipedia.org/wiki/Mickey_Redmond the long time color commentator for the Detroit Red Wings went undiagnosed for many years. His condition usually prevents him from covering the Wings on long road swings (though he’ll sometimes do the one-off road trips nearby or in certain cities), since he usually makes it a point to bring his own cookware for the same reasons you outlined. It’s simply too much of a hassle to try and stay on the diet.
    After the Wings won the cup in ’98 http://en.wikipedia.org/wiki/Slava_Fetisov made a point to bring Mick a case of potato vodka back from Russia after touring with the Stanley Cup.

  2. Thanks for sharing.
    Although, I wish people wouldn’t use phrases like “The #1 Disease You’ve Never Heard Of.”
    Ever heard of the Carney Complex? What about Cushing’s Disease? It took me 32 years to get diagnosed with a fatal disease that has destroyed my body and subjected me to years of ridicule, pain, frustration and debilitation.
    There are literally hundreds of invisible illnesses out there, and they’re all shitty to have.

  3. “She can’t eat out at a restaurant again for the rest of her life.”
    Umm what? Yes she can! There are a TON of places now that have completely GF menus, and it’s not hard to find them. Most are listed on their websites, some you have to ask for… but it’s not anywhere near impossible to go out to eat.

  4. Wil, thank you so much for posting this!
    My mom has CD, and it’s been a pretty interesting few years since she found out and changed how she eats.
    There really is not enough people out there that are aware and informed. That’s been proven a lot of times, especially when we take her out to eat and she tells the server that she can’t have anything with any form of wheat in it, and they tell her “that’s fine, we have white bread too!”, or they roll their eyes at her when she has to send back a salad because they put croutons on it… or any one of a far too high number of incidents that I have seen.
    I know how many readers you have, and I for one am so grateful that you are putting this here for that number of people to see and read and become more aware of CD and everything that comes with it.
    Kudos to you!! Thanks from me and the most awesome, important woman in my life! <3

  5. I found out about Celiac disease when i saw repeated references to “gluten free” in my friends health food store…I asked why gluten free was so important…They explained it all to me…Before that i was just another radio guy who thought it was just another fad diet…Since then we have discussed Celiac disease several times on my radio show…Wil…your mom is doing a great thing getting the word out…Because i’m sure that most people are like i was…Totally clueless about this devastating affliction that affects the lives of so many.

  6. I think this is becoming more and more known as time goes on. So many folks at my church have it. I honestly think that the state of the food industry is contributing to more and more people being allergic. I’d like to know if there’s a single gluten allergic person in say… the Amish community, where they know exactly what has happened to every ingredient in their food, and processed everything the old fashioned way. They eat bread, and pie and cakes, and cookies, and pancakes etc… like it’s going out of style.
    I think it’s not just wheat, but our SOURCES of wheat that are causing these problems.
    Thanks for sharing!

  7. I didn’t see anyone linking to this apologies if someone has already.
    http://www.abc.net.au/news/stories/2009/10/22/2721267.htm
    Short form:
    Researchers at Brisbane’s Princess Alexandra Hospital have shown for the first time that parasitic hookworms could hold the key to treating coeliac disease, which is caused by gluten intolerance.
    They still recommend keeping to a gluten free diet but it may be a step forward in finding a treatment.

  8. You just summed up my situation. I cut out gluten as a test to see if it would improve my constant digestive problems and hey presto, it did. Six weeks later I went to the doctor to be tested for Celiac, which he did and it came back negative, but he was not aware that in order to have an accurate result on the Celiac test, you must be eating a gluten-rich diet for antibodies to show up. I’d been gluten-free for 6 weeks, so I don’t know if the negative result was true or false. In order to know for sure if I’m Celiac or if I’m just intolerant, I’d have to spend a few weeks eating gluten. Which I already know makes me sick (the few times I get contaminated I am ill for 2-3 days). So I live in the limbo-land of knowing what is right for my health, but without the ability to scientifically back it up. It’s a problem.

  9. Thanks for highlighting this, Wil. I have never been tested for CD. I discovered I have at the least a strong sensitivity for gluten when we took my oldest girl off wheat for a bad stomach condition. Surprise! It healed. We gradually stopped all gluten as a family, and our health got better and better. When I get “glutenized” now I feel it for a couple of days, and yeah, it’s a crumb’s worth.
    We’ve never been tested because to get tested means we’d have to go back on gluten, and none of us want to be that miserable again. So we just eat that crazy fad diet and do better. My MIL used to make fun of us until a doctor suggested it for all her chronic health problems. She got better, decided it wasn’t gluten, went back on it, got really sick again, and now she’s GF for life.
    If you’ve got chronic health problems, just try it. It’s not as hard as you think, and we don’t buy all the substitutes. We just learned to enjoy life with more vegetables and no gluten.

  10. Thanks for the post! I’ve been living gluten-free since 2002. I was originally diagnosed as an infant, back in 1964. Back then, it was believed to be a “childhood illness” that you grew out of, and if I was ever on a GF diet at the time, my mother can’t recall. After a few months, the obvious symptoms abated and the diagnosis was forgotten until I looked it up years later. Suddenly, all the seemingly unrelated symptoms were tied together. And now, they’re all gone.
    I still haven’t convinced my parents or siblings to get themselves tested, even though a cousin also has celiac. It’s a shame, because they still suffer from aches, pains, cramps, and migraines.

  11. I think you’re right. It just doesn’t occur to people that we are *gasp!* all different, that some people must alter their diets one way, others must alter them another way, and some of us are blessed to be able to eat anything (in moderation).
    I also understand that there are “types” of gluten intolerance, going from “makes you feel ill if you eat more than a little” on up to “NO GLUTEN IN THE HOUSE EVER.” Because people are different. It’s how we’re made. People don’t get that either.
    (Can’t help thinking this is like how I get when people wear glasses to “look smart.” I have severe myopia. I don’t mind wearing glasses, but it annoys me that people use a sight aid as a fashion statement.)

  12. Wil,
    Thank you so much for sharing this. My sister (also Amy!) and my mother also have CD!! So we definitely appreciate the info and the plug!! Tell your mom to keep up the great work!!
    Linnea

  13. I’m guessing celiac’s must be even more common in Finland, because over here it’s a very well known disease. It’s like lactose intolerance – almost everybody knows what that is by now, and nobody certainly thinks it’s some fad diet. Many restaurants have little icons to show which foods are okay for celiacs. Grocery stores have a specific section for celiacs. When a friend of mine had constant stomach pains lactose intolerance and celiacs were the two default diseases that were first tested for.
    I do wonder what’s made it so common nowadays when people have been eating grains for hundreds of years.

  14. A good case can be made that everyone has some degree of wheat/grain intolerance. They (and grain like things like quinola) cause leaky gut, which has a strong association with a bunch of auto immune issues. We do not seem well adapted to neolithic foods (grains, legumes, seed oils, and to a lesser extent dairy and nightshades).
    http://robbwolf.com/faq/ is a good place to start.

  15. I’ll link this into a blog post @ Rosy Thoughts first thing when I wake up tomorrow (today?!?!? Apparently it’s 2:30 in the morning…)
    Thanks to you and yours for sharing!

  16. Thanks Wil, and Wil’s mom for posting this. I’ve had symptoms nearly my whole life that didn’t make sense together. I’ve been diagnosed with Fibromyalgia, Chronic Fatigue, and IBS, lactose intolerance, and more and finally realized thanks to this post a few days ago that all of my symptoms could fall under the symptom list of Celiac disease.
    For the past year I’ve undergone loads of testing and nothing has ever been conclusive for a cause of all the symptoms, but I’m going to a local Celiac specialist and getting tested at the end of the month, and hoping to God that this really is it. The diagnosis I’ve been looking for. Thanks for putting this out there.
    Sincerely,
    a Fangirl since your Tiger Beat days ;-)

  17. My 11 year old daughter, Jane, has celiac. AND our family has been watching TNG episodes in order for a few years now (we’re on season 5 currently). So when I told Jane that your sister and mother have celiac, she smiled broadly. (She has a little crush on Wesley.) I am thankful for your post. Poor Jane reported bellyaches all the time when she was 4 so we took her to a doc who told us she was “just a bellyache kid”. Grrr. She ended up diagnosed at age 8, and it still makes me mad to think about all those years of vomiting and not being able to keep up with other kids that didn’t need to be. Even the &#$@*!@ doctor didn’t see it–that says a lot about how little known it is. So please thank your mom for me, one mom to another. We are all doing what we can so that other kids don’t need to be sick for so long.

  18. Wil, as someone who is gluten intolerant, I sincerely thank you and your mom for posting this. I’ll be visiting her site a lot and promoting it to others.

  19. For those interested, this is a blog/site that focuses on gluten free recipes. I myself don’t require a gluten free diet, but know people that do need or want to avoid gluten for various reasons. Many of these recipes are quite good! I recommend the gluten free banana cake (bread). I made it myself and it is really easy!
    http://www.elanaspantry.com/

  20. Hey Wil,
    I’m so glad your Mom and your sister are doing better now! I don’t have CD, but do have some sort of problem with gluten where I need to be on a GF diet as well. Although I can tolerate it in small amounts and so I’m able to enjoy restaurants and eating at a friends house on occasion. I’ve been self-diagnosed and even though my health has improved dramatically in the last year, my clueless doctor can’t acknowledge that there is a problem (probably just because there’s no prescription he can write). I think my Dad had the same issues with gluten that I do, and I think that’s why he died at the relatively young age of 65. Anyway, I just wanted to say that AWARENESS is key and I am very glad your Mom and Sis (and you) are helping folks out!

  21. I was going to mention the same thing. I know people who’ve done a “gluten-free” diet just because they think it’s healthier or will make them lose weight but not because they have a medical reason to do so. I get annoyed because I think it takes away the seriousness of the diet for people who need to avoid gluten or wheat in order to just feel normal.

  22. If you feel better by not eating it, by all means continue. If you want another test that does not require eating gluten and feeling like crap, try getting the HLA-DQ test.
    Basically it tests to see if you are one of these two DQ blood types. If you’re not, there is only a .0003ish% chance you will ever develop Celiacs (since the gene [and disease] can become active at any point in your life).
    Of course, it might come out negative, in which case you’re like me and you have a gluten sensitivity (more extreme for you than me).
    Hope this helps? My mom has it and I’ve been tested many times, so I know many of the different types of tests.

  23. Mainly agreeing and chiming in with some more stuff.
    When I was talking to my Doctor about my concerns (My mom has Celiacs, and I was displaying symptoms) he at one point said, “It seems like everyone in the area has this!”
    It has, unfortunately become the next “big thing.” Like Atkins. But my mom loved the Atkins fad because “I can order a sandwich without bread and no one looks at me funny!” But fortunately, because all these people are “convinced” they have it, it’s becoming more mainstream. There is a gluten free section in many big chain supermarkets. And there are Betty Crocker GF mixes. Which is frakking incredible.

  24. Unfortunately, that just isn’t true. These restaurants that advertise a “gluten-free menu” cook them in kitchens that are covered in flour, cross-contaminating the so-called gluten-free items. They are also handled by people who have handled gluten-rich foods. They are extremely dangerous to those with celiac because of this false sense of security. If you have celiac, don’t trust a restaurant that offers foods that they claim are gluten-free. Real gluten-free cooked foods are made in kitchens that don’t use any wheat or barley products. It is indeed impossible to go out to eat. It’s made harder by people like these who don’t understand how serious this really is. No cross contamination of any kind can be allowed.

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