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.
A good friend of mine just found out he has CD after an entire life of thinking he was lactose intolerant. He cut out the gluten instead of the dairy, and he’s never felt better. Thanks for the message, Wil’s Mom!
You need to add http:// to the http://www.notevenacrumb.com links.
Glad to hear your Mom and sis have figured this out!
Great post, thanks. I too was going to comment that the links don’t work, you’re probably already on it. Very ironic that some of the Wheaton’s can’t eat wheat. Glad your mom and sister are well now.
My uncle was diagnosed with it in 2005, nearly died before they finally figured it out, lost almost half his body weight, kidneys started shutting down, the works. Spent a month in ICU while they tried to figure it why he was so sick. I’m also convinced it had a role in my mother’s death last November. We kept telling the nursing home she had it as well but they refused to listen and then kept wondering why she was sick all the time. The fact that is was a crap-hole facility didn’t help, but we didn’t have any say in the matter thanks to the state of South Carolina’s social services department.
Thank you! It took years for me to discover I have a gluten intolerance. The bloating, aches, black circles under my eyes and severe fatigue have all gone away. It is not easy to stay GF but we need more awareness.
One of my housemates was diagnosed with CD a couple of years ago and it’s been difficult, especially since she’s living around all of us who don’t have the disease. Once her body regulated itself, she’s been doing a lot better. It’s also made all of us aware of CD and we try to be very careful with gluten around her.
Thanks for spreading the word!
One thing you should consider is that if your sister has Celiac disease you may well be sensitive to gluten also. As you age, it may become apparent while younger it may not show up at all.
I have this problem. Now that I am in my fifties I’ve had to eliminate gluten — younger no problems, older and got the symptoms. Some of my relatives have Celiac disease. Nearly 1/3 of the US population is sensitive to gluten to some extent by current research estimates.
And as Veronica said, “Thanks for the message, Wil’s Mom!”.
My sophomore year of college, my best friend and I were a complete mess. My problem was pretty easy to figure out (but hard to solve)–depression. He, on the other hand, was often tired, weak, sick. He was athletic, but some days he’d nearly pass out from pushing on when he shouldn’t have.
Once when I visited him in his dorm room, I found blood on his sheets and he said he had been bleeding anally (rectally?). It was incredibly scary because he would test negative for mono, cancer, etc. The health center kept taking blood tests…and all through this he only thought his stomach could handle oatmeal, so he would eat just that and get even sicker.
Had this been years ago, he might’ve died from “wasting.” Thank goodness someone finally suggested it might be Celiac. Within a few months he was strong and healthy again, though he has to keep a gluten-free diet from now on.
It’s a scary disease when unknown and untreated.
My wife and daughter (and my wife’s sister, and we’re pretty sure their dad, although he won’t hear of it) were also diagnosed 6 years ago. Having to be careful of what or where you eat is a pain, but it’s a huge relief actually knowing what was causing symptoms for all those years and how to avoid it.
My mom’s friend’s daughter got diagnosed with Celiac a few years ago. Then my mom went a little nutty and decided that all the world’s problems were due to gluten. To the point where she pressured me into having my dr test my gluten tolerance. Guess what? It’s fine. On the other hand, it’s good to know that it’s fine.
Thank you so much for taking time to continue spreading the word. Both my brothers have been diagnosed and one of my brothers, much like your sister, can’t even use the same utensil if it’s touched a product containing wheat. It is a daily struggle for them to educate others and maintain a diet that is gluten free while still tasting good. 🙂 So thank you again for the work that you do on behalf of my brothers and all those out there quietly struggling with this disease.
Having to adopt a gluten-free diet can seem like a real doom, but there are some marvelous resources on the web for re-learning how to cook and bake. The conversion, which used to be so difficult, is getting easier all the time, as a whole army of CD sufferers and great cooks and foodies learn how to create delicious food without gluten.
My personal favorite is Gluten-Free Girl and the Chef.
I was just diagnosed with Celiac Disease last week after years of increasingly awful symptoms. With just a week on a gluten-free diet I already feel better than I have in a long time! I’m super thankful to my aunt, who wasn’t diagnosed until she was in her fifties, and who helped me decode my symptoms after a (delicious) family pasta dinner. Here’s hoping Not Even a Crumb can help others figure it out even sooner! Thanks Wil’s Mom and Wil for sharing! I’m sure her blog will be a great resource for me as I figure out how to navigate my new gluten-free life.
My Grandma is a celiac. I’m keeping my fingers crossed I don’t develop it… so far pretty sure that my lactose intolerance is exactly that and not a precursor.
Though, there are some pretty nifty bakeries out there catering to the specialty eats people. There’s a local one here that makes a gluten-free carrot cake that is AWESOME.
Thanks so much for sharing this. I haven’t been checked for celiac, but I do have some awful symptoms myself and I plan on checking out Not Even a Crumb immediately! Thanks Wil and Wil’s Mom!
Very good of you to mention this, Wil. A close friend of mine found herself, her three sons, her mother and her brother all suffering from Celiac as well but they didn’t figure it out until her brother was in the hospital on edge of death. Once he was properly diagnosed they had the whole family tested. They now live a completely gluten free lifestyle and she runs her own web site, http://www.wheatfreefamily.com, full of recipes and other information. She makes some awesome cookies and bread.
Thank you Wil’s mom! My husband has to avoid gluten as well, so we know how crazy that can be!
I totally get it.
I was diagnosed 11 years ago after years and years of doctors and useless cures, a life with too many symptoms to be listed and people always judging me assuming I had some eating disorder while eating the most dangerous diet for a celiac filled with pasta and pizza (I’m italian…).
Now people pity me ’cause I can’t eat pizza and what non-celiac people REALLY don’t understand is that it’s totally NOT a problem. After a lifetime being sick starting a gluten free diet was the best thing of my life.
By the way, I don’t know in USA, but here in 11 years awareness grew a lot, almost everyone I talk to knows what it is and has a friend who suffers from it and almost every restaurant knows how to deal with a celiac client.
The great news about Celiac’s is that the diagnosis is incredibly simple – one blood test. The bad news is that the ‘classic’ symptoms are also indicative of a lot of other genetic or chronic disorders and as it gains attention, doctors are using it more as a diagnosis even when it may not be the answer. When the blood tests come back negative, many doctors now call it “gluten-intolerance” instead of Celiac’s, and stop looking for further issues. For those struggling with lifelong symptoms, the rise of a new ‘it’ disease is always very difficult. I am glad for the people who the diagnosis does help, but it isn’t a cure-all unfortunately.
This is actually pretty good:
http://newplanetbeer.com/homepage/
Made right here in Boulder, home of the Gluten-Free Option.
My husband was diagnosed when he was 11. He’d been sick for 5 years, and by the time he was 11, he was so sick that he was dying from malnutrition. Doctors told his mom that he was just “refusing food” because he was “spoiled” and that there was nothing more they could do, so she should make him as comfortable as possible while they waited for him to die. She wasn’t willing to accept that answer, and finally found a doctor who suggested performing the endoscopy and colonoscopy to take a look at his intestinal tract, which showed the destruction left by his gluten-heavy diet.
It’s hard not to become an advocate after having your child rescued from a lifetime of chronic illness. My mother-in-law tells everyone we know about Celiac Disease, and I can’t tell you how many people have reached a diagnosis because of it. My husband and I started a website for Gluten-Free baking as well, because we wanted to share our love of food with other people. Thank you for sharing your story – it is so important!! <3
Yes, it is so annoying that people consider gluten free some hipster fad diet! When you can see a major change in how you feel when you cut out gluten, it speaks for itself. Celiacs has been around for ages, it’s only now through technology that people are finding out just how widespread it is. Kudos to your mom! And I hope she and your sister live long a prosper in good health!
Will there be recipes?
As someone who can eat everything (and will try everything, at least once) I always feel for my friends who have more or less restricted diets (from simple allergies and lactose intolerance via CD to Crohn’s) and as a keen home cook, I’m always interested in learning about ways to cater for them.
Gastrointestinal diseases so frequently seem to be misdiagnosed. I wish I knew why.
My wife suffers from Gastroparesis – and it took four years of problems and a change in doctors to figure it out. She was incorrectly diagnosed with something new every year until we finally had enough and went to another doctor who figured it out right away.
I agree. My mother developed terminal carcinoid cancer (which generally develops in the intestines) while doctors were chasing IBS and finally Celiac and a lot of other things without ever running the simple blood test that would diagnose her cancer. So it was caught far too late.
Thanks, Wil! Your sister’s story is my own. I thought I was going to die and my doctors diagnosed me with “anxiety disorder” and prescribed Ativan! It was a naturopath who figured it out and got my diet straightened out. Gluten-free living isn’t fun, but it’s like getting a second chance at life!
Goodness, when I loaded your blog I thought I had accidentally clicked on my celiac.com toolbar button! First off, Good for You, Wil’s Mom!! We celiacs need as much help as we can get. My son was diagnosed at 18 months and it changed our lives. First, it helped him become the healthy happy 4 year old he is now. Second, because of what happened to me…
I decided to comment on this post so that you (Wil) can avoid what happenned to me. When my son was diagnosed, I kept putting off getting tested for celiac, mostly because I didn’t want to know. After 9 months of agonizing skin issues I finally got a diagnosis because I happenned to mention my son’s condition to the dermatologist (I have dermatitis herpetiformis, a type of celiac where the nasty antibodies attack your skin instead of your intestines).
Do youself and your GI system, bones, brain, etc. a favor; get tested as soon as you think you may have a problem, maybe sooner or on a more regular basis. Watch for the usual GI things that are the sign of celiac, but also weird things like clumsiness or not thinking clearly (‘gluten ataxia’), or weird, mund-numbingly itchy rashes that won’t go away (the ‘skin celiac’ I mentioned).
Again, Yay Wil’s Mom! I’ll keep an eye out for the PSA!
Thank you so much for this. Every single one of us who has to eat gluten-free is annoyed by the perception that this is a fad. Ridiculous. Watching your sister and mom suffer turned you into a believer.
More exposure only helps. So thank you.
http://glutenfreegirl.com
Thank you for sharing your blog with your mom to talk about CD. I was born with Celiac Disease, but only found out six years ago. What a difference it made in my life. Because I create mixed-media projects and write for national craft magazines, I also have to make sure the products I use are gluten-free as well. If they are not, I look for ways to create the project with a gluten-free product.
I wish you the best with “Not Even A crumb”. With efforts like yours, more and more people are understanding about Celiac Disease. When more people understand about it, we can have a more normal life.
Carol Heppner
Queen of Creativity
http://www.carolheppner.com
Wow, Wil! That’s great that your sister and mother are such Celiac advocates. My wife has Gastroparesis (GP), which is another not-so-well-known gastrointestinal disorder. Basically, it’s a paralyzed stomach that doesn’t contract and push food through at a normal pace. While the average person’s stomach empties in a few hours, a GP sufferer’s stomach could take more than a day to empty some foods. As a result, GP sufferers eat a very strict low fat, low fiber diet (fat takes longer to break down than simple sugars and fiber can cause obstructions called bezoars).
She was diagnosed 7 years ago when we were dating and has had a similar struggle finding patient-centric information about the disease. No one dies from GP but the diet restrictions and resulting malnutrition greatly impact one’s quality of life.
Now she is a health counselor licensed by the American Association of Drugless Practitioners. She participates in the Digestive Disease National Coalition in Washington DC, has established a much needed online community of GP sufferers (http://www.LivingWithGastroparesis.com) and is currently writing the first book ever to address the day-to-day struggles of GP from a patient’s perspective.
Needless to say, she and I can relate to your story. Since your sister and mother are so active in the Celiac community, they have probably already heard of the book, “But You Don’t Look Sick: Living Well With an Invisible Chronic Illness” by Joy H. Selak, but if not I would encourage them to check out. It’s essentially a Chick Soup for the Soul style book for people with … well you get the point. It greatly helped to raise my wife’s spirits.
Awareness around rare diseases is extremely important, especially genetic conditions. Having been through the mill myself for something thankfully not as dangerous as CD, I know too well how little general practicioners usually know about the more obscure afflictions. What “saved” me was a central centre for diagnosing rare conditions, something I think the government should make sure has enough funding and capacity to take on more of the “puzzling” cases that general practitioners face (also, on a sidenote, I am in Norway, not sure what system you guys have for such things over there).
General practitioners are great for the common cold, the flu and all such well-known phenomena. However, they simply do not have the capacity to keep up to date on every rare or not sufficiently documented illness. Which is why I think it is important that there is somewhere GPs can refer patients to, which is mandated to keep up to date. While general awareness of diseases is helpful, having diagnostic centers available (possibly requiring referral from a GP) would help a lot. Patients/next of kin would know what they should “push” for when their doctor was unable to find the solution, and doctors insightful enough to realize that they can be good doctors without having all the answers would have somewhere to turn when they needed to.
I know how you feel, Chad. My wife also has GP. Diagnosis is only the first step. Day-to-day management is a whole nother problem. Check out http://LivingWithGastroparesis.com/. It’s my wife’s website. She’s very knowledgeable about the disease if you need advice.
Thank you, Mrs Wheaton, and thank you, Wil for giving her this space. I don’t have Celiac’s but I do have several severe food issues, so any awarenes hlpes us all! Tweeting and reposting to FB.
Thanks for spreading the word! I was diagnosed with celiac about 10 years ago. For me, the worst part about the disease isn’t avoiding gluten, or even explaining my restrictions to ignorant people; it’s bread. Gluten free bread, or at least all the breads that I’ve encountered, must be toasted or microwaved to make them bearable. I’m about to depth-first traverse all the links you posted looking for bread recipes.
The more people know about celiac, the more people will find out they have it, and the more quickly someone will come up with a treatment other than diet!
Not to be argumentative, but just because a diet is a necessity for some, does not preclude it from being a fad for others. It most definitely is a fad diet around my area, just like South Beach or Atkins was in past years.
I have a friend who has CD (wasn’t diagnosed until his mid 20s, and his dad is a doctor!) and he is particular irritated with people who are currently hopping onto the bandwagon of a gluten-free diet when they have no medical reason to do so. He will rant about it at length in fact.
Great work and its awesome to have more people aware of Celiacs!
My favorite GF Blog: http://glutenfreegoddess.blogspot.com/ this woman makes THE BEST food.
Also, try Bob’s Red Mill GF Brownie Mix (add a hearty amount of GF chocolate chips). My non-GF friends say they are the best brownies they have had. Little do they know…
The irony of the Wheatons not being Celiacs is higher than the kids at Reed College.
Thanks for this. Shared with my family.
Best wishes to your mom and thanks for informing me about this. The only other person I’ve ever heard about celiac disease from is Elizabeth Hasselbeck (yes, I watch The View sometimes; don’t judge) — and given how wrong I think she is on nearly everything else, it’s always gone in one ear and out the other — and I’ve probably been guilty of labelling it in the fad diet category (probably because someone was trying to sell a book about it)
The site is exactly what a website like that should be – informative, easy to navigate, and chock full of information. I like feeling educated/less ignorant.
I’m actually a little torn about gluten-free becoming a fad, because it does have the advantage that there’s a lot more gluten-free options available (and a lot more mainstream companies coming out with gluten-free choices) than there were when my wife and daughter were first diagnosed. I just hope that as the fad passes, the options don’t go away.
My daughter is a brittle diabetic, and over the last two years has lost over 100 pounds. She would become nauseated and begin vomiting shortly after meals. She spent over 100 days in the hospital last year and 28 this year. During the ice storm a month ago she had to be shuttled to a different hospital, and see a different doctor. He said within a few minutes that she had gastroparesis (paralyzed stomach)and possibly Celiac Disease. After the diagnosis tons of people have told us that they have or know someone with this disease. We have been researching. Thank your mom for spreading the word and the knowledge. Knowing is half the battle!
Hey, Wil (and Wil’s Mom)-
I’m not sure if you’ve heard of this, but the awesome menu planning service that my wife and I use (Relish!… http://relishrelish.com) has a Gluten Free menu planning service as well called GFree (http://www.gfreecuisine.com/).
Relish! Literally changed my family’s lives. It has really great meals to choose from and then prints out a combined list (sorted by sections of the grocery) of all the ingredients. We love the meals and have been paying customers of the service for a couple of years now.
I have not used the GFree site, but I know people who have been diagnosed with CD and their number one fear is figuring out how they are going to change their diet without help and without having to consume a whole bunch of books on diet. If the Relish! is any indicator, GFree might be a useful tool for people newly finding themselves in this predicament.
Please don’t take this as SPAM.
When we wrote about how Relish! reshaped our habits on my wife’s blog, the commentors talked about how they were crying when they read our struggles; seeing how closely they resembled their own. It’s odd to say that a menu planning service can have that much of an impact, but I think it can (and that’s without CD being part of the mix). So, I only offer this as a possible tool (and as a paying member of its sister site) for those facing the challenges of CD.
Good luck.
Wow. I’m amazed I didn’t know this before. I went through a pretty serious discovery of a nasty gluten-intolerance about 2 years ago. Although I technically tested negative for Celiac antibodies (and the microbiologist in me knows how not great that test is) I immediately went gluten-free and have never felt better. Being a scientist, I also help educate those I meet and have gotten really, really into the science of gluten-free baking. Actually, my blog contains a number of interesting food hacks for gluten-free audiences and you should let your mom/sister and anyone else know because I’ve been told my recipes are quite good. I recently made myself a red velvet cake for my birthday that was to die for, gluten-free or not. Anyway, here are my recipes http://girlsaregeeks.wordpress.com/category/food/
I will definitely be visiting your mom’s site and promoting it through my gluten-free community, which interestingly enough overlaps pretty well with my Star Trek loving community … who knew.
Thanks for spreading awareness!
Rosalind
Girls Are Geeks
I was diagnosed as a Coeliac in 1971 when I was one year old and have only recently realized how lucky I was to be diagnosed at that time. The blood test for Coeliac disease has become widely available in recent years and it’s hard to understate the effect that it has had on improving so many people’s lives.
Science – it works bitches.
Wil, you didn’t mention whether you got the genetic test or the antibodies test. If your genetic test was negative, you are pretty much free and clear. If it was just the antibodies test, then you may still have inherited the genes and it’s possible you could develop Celiac Disease at any time.
I was diagnosed this summer and then my daughter was diagnosed in the fall. My boys tested negative for the antibodies but I was told to test them every 3 to 5 years unless I know for sure they didn’t get the genetics for it. I’m hoping to get them the genetic test and get it ruled out!
I love that your mom has been such an ambassador for this and that you’re helping her reach people.
And finally, I follow you on Twitter with another account (the online me) and was amused that a real-life tweep RT’d you. My worlds collide!
I have a cousin who does medical research on Celiac disease. I’m going to forward this to him.
I’ve been gluten-free for two years after spending over half my life in and out of hospitals for a variety of “syndromes” and other symptoms of Celiac Sprue: IBS, acid reflux, chronic migraine, insomnia, chronic fatigue syndrome, severe allergies, bowel obstructions, inflamed lymph nodes, and chronic anemia (iron, B-vitamins, vitamin D, and vitamin K), just to name a few. I have become very vocal about the disease since my biopsy diagnosed what doctors had been prescribing 8 different daily medications to “cure” , and I applaud your mom for speaking out as well. I am constantly telling people that Celiac Sprue is not something to be mocked as an excuse for not eating gluten. It is not a fad diet, it is not a choice. This is survival. And for those who still question how deadly Celiac can be, one need only look to the death of Joe C. Yeah, it can kill.
Thank you, Will’s mom.
This was timely as one of my BFFs is having her daughter tested for this. Thanks!
I’d like to continue the thanks, Wil and Wil’s Mom! My brother and I both had a form of Celiac’s when we were kids, back in the 70’s. I’m sure you can imagine how fun it was finding food we could eat back then. I think I read somewhere that Celiac’s is more common than peanut allergies, and potentially just as deadly, yet so many fewer people know about it. Keep up the great work, and let’s keep all of the great gluten-free options going!
Despite living in a population prone to coeliac disease (Ireland) I find the level of awareness of it is not great. Our local Catholic church, which my mother is a Eucharistic minister for, has only recently started offering gluten free communion and their newsletter says it is ‘for those coeliacs who cannot tolerate even a crumb of bread’ (in the wine, which is what is used otherwise). And you have to go round the back of the church and ask them for it beforehand. That sounds a lot like ‘Gosh, aren’t you people really awkward?’ to me.
On the other hand, I have seen people who have not been diagnosed as coeliac go to a lot of trouble to try a gluten free diet which doesn’t seem like the best idea either.
Fair play to Wil’s mom for getting involved in patient advocacy. It can be a thankless task but she obviously puts a lot of effort into it.
You know, I can’t speak for the radio show host, but I do think that some people without CD have made gluten-free foods into a health fad, or at least they’ve misunderstood the purpose. As I’ve been researching nutrition information for myself, I’ve come across several warnings not to follow a gluten-free diet unless I have a gluten allergy or intolerance (I don’t). But I think that some see “gluten-free” and associate it with low-carb, fat free, sugar free, etc.
So, I guess this is to say thanks for this post for another reason–so that those of us who don’t have the disease understand who these foods are for and why they’re important.