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. Even if you come up negative on Celiac tests, giving up gluten is still a good idea. Nobody really needs to eat wheat.
    My Crohn’s disease really came under control when I gave up gluten. My best friend with rheumatoid arthritis has had similar results, and neither of us tests positive for Celiac. Studies are starting to show that gluten may either cause or exacerbate a long list of inflammatory and autoimmune diseases.
    Wil, try the New Grist gluten-free beer. It actually tastes “wheatier” than a lot of glutenous beers I’ve tried.

  2. Thank you and thanks to your Mum for putting the information out there. Pretty much one entire side of my family are celiacs and I only found out because the symptoms of what I was suffering were exactly the same as a friend, who suggested I go gluten free. I’d never even heard of celiac disease before then. The more people that know about it, the better things will be, especially as more people realize that it isn’t just ‘fussy’ eating or a fad diet.

  3. I think all media is inclined to report chronic illness in a bad light, how else would it be a good news story? “You’re going to have a disease for the rest of your life and will have to make major lifestyle changes to accommodate it, and although you might get some relief many people don’t” isn’t interesting enough for the news. I find it even worse with my particular brand of chronic illness. It’s great that people like your mum are promoting the reality, and offering support to people who need it (and people who love people who need it).

  4. GF diets also help people with Autism (kinda surprised this hasn’t been brought up yet).
    I wonder if wheat could be gene modded to GF. If so, apply market pressure to doing that and you’ll help a lot of people.

  5. Please don’t dispense possibly harmful amateur medical advice. Gluten-free diets have been shown to be harmful to people without Celiac disease (or a select few other disorders).

  6. Wil, is she allergic to Rye bread as well? I ask because although my girlfriend has as of yet to be diagnosed with Celiacs Disease she has developed an allergy to wheat in most of its forms, but is still able to eat Rye bread comfortably due to the low gluten levels in it.
    I had dated a girl back in the day who had extreme Celiacs as well. Her doctor even warned her that if she ingests too much gluten in her lifetime that the allergic reaction in her lower intestine could burn a whole through the intestinal wall, resulting in having to have all the lower intestine surgically removed and essentially making the person only able to eat from a blender for the rest of their lives. It’s a terrible thing to happen to someone and I’m sorry it’s in your family.
    But don’t think that a gluten-free diet is just for those allergic to gluten. Gluten as a substance is kin to Elmer’s Glue for fat and actually reducing the amount of gluten ingested can have radical weight loss results as well as increasing a persons metabolism.

  7. While you’re certainly correct that the gluten free diet has several very real applications this doesn’t mean there’s isn’t a fad component to it. People who have celiac’s disease(my cousin is one…he’s also lactose intolerable; try that combination…) or some form of wheat allergy really do need the diet. It’s a real thing. But there are those who advocate the diet for people who don’t suffer from any of those conditions for various reasons.
    For people without these fairly specific conditions a gf diet does them no good. It won’t harm them if they still manage to eat a balanced diet, but this can be tricky to do. There’s nothing innately wrong with gluten.
    For the 1-2% of the population that actually require the diet due to celiac disease or similar conditions: not a fad, and rather necessary to living comfortably.
    For the remaining ~98% of the population: Fad diet.

  8. Celiac disease crept up on me as well in my 30’s. Originally thought it was lactose intolerance (which is a symptom of CD) but eliminating dairy only helped; it did not solve everything.
    It is a pain to avoid wheat (especially if you are sensitive to trace amounts) but it does make you eat healthier.

  9. Thank you so much for posting this! Celiacs and other gluten-intolerant individuals need all the visibility we can get, just to stop cases where relatives and friends call us delusional and refuse to help (or even sabotage) our attempts to be healthy!
    You are so awesome for posting this!

  10. I don’t think you are being argumentative. While I appreciate that there are LOTS of people who can’t have gluten, I find my intelligence insulted when something that really should under no circumstances contain gluten (frozen peas for instance) says “gluten free!” in big letters across the front. I think the options now are great, but the way many things are marketed sure does make it feel like a fad.

  11. This is a great post, thank-you to you and your mother for posting it. My (then) 1 1/2 year old son and I were diagnosed with Celiacs last year. He was diagnosed about a month before I was. Once we changed his diet; he went from a little boy who was very clingy, screamed in pain throughout the night, had an excess of dirty diapers, and seemed behind in his development milestones to our little firecracker we have the pleasure of being around every day. It is amazing how the diet change can really affect your every day life.
    Hopefully, the awareness raised by the PSA will help put some pressure on the FDA to finally release Gluten Free labeling guidelines that have been in limbo for years.

  12. you have made my point better than I did. Thanks!
    I have a very hard time accepting medical advice from non-professionals, and I agree; for the % of the population without Celiac’s, it is a fad.

  13. I’m guessing you’re not celiac.
    There are lots of things that should under no circumstances contain gluten, but either they do contain gluten as a food additive or they are processed in a gluten-rich environment, and if I eat them I will be VIOLENTLY ILL. Sunflower seeds shouldn’t have gluten in them either, but this has happened to me.
    Seeing that on a package of frozen veg means that that frozen veg wasn’t processed two tables over from something else that had flour on it and got flour in the room air, so that it contaminated the veg as well.
    Due to the realities of food processing, many foods that do not contain gluten ingredients may still be contaminated. I cannot eat food that has been prepared in a room where someone was working with wheat flour and getting it in the air. I cannot eat food that has been cut with the knife someone else used to slice their bread. I can’t eat food that has been cooked in a seasoned cast-iron skillet where gluten-containing foods have been cooked. I cannot eat dip or hummus if people have been sticking their knives or spoons into it, spreading it on bread or crackers, then sticking the knife or spoon back into it. Once I got sick after eating Hershey’s kisses that had been in a bowl with other candy. Our best guess is that I got something with gluten in it on my hands while taking the wrapped kiss out, then got it on the kiss before I ate it. Rube Goldberg lives. I can’t French kiss anyone who’s eaten bread since they brushed their teeth, either.
    It is not a fad. It is not that I am too dumb to read a label. But if an item is labelled ‘gluten free’ that means the food is not only free of gluten ingredients, it has been prepared in a gluten free environment–or has been prepared in a shared environment by people who know how not to cross contaminate food.

  14. Please don’t forget that it is possible to be gluten-intolerant without being celiac. It isn’t a fad for non-celiac gluten-intolerant individuals either.

  15. Meeeh. I’m medically proven celiac but a lot of people who have gluten sensitivity that does not affect their intestines feel better on a GF diet despite being normal on all medical tests. We are only beginning to understand how CD genes and gluten intolerance affect people who do not express the gene by having intestinal problems. My first symptoms were anxiety and depression. I thought I was seriously mentally ill for years. They didn’t want to test me for celiac–thinking it was fibro–but I insisted because unlike fibro, celiac has a treatment that works. I tested off the charts.
    Anyhow, if they try it and it does them no good they’ll go back to gluten. If not, there are so many undiagnosed celiacs that really, it may be all to the good.

  16. 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.
    If you hear some local newsmodel presenting GF diets as a fad, it’s likely because they’ve encountered a large number of people who treat it a The Next Big Thing, instead of a medical necessity.
    Don’t get me wrong, a number of people of my acquaintance MUST maintain GF diets. For them, it’s the difference between healthy and happy or screaming in agony. But there are people out there who have simply decided on their own that they have gluten allergies/sensitivities/intolerance, or they’re convinced that cutting out wheat will help them trim the size of their asses – my husband works in the health supplement industry, and in addition to spending time helping those legitimately in need of GF options, he WASTES a lot dealing with pinheads who’ve self-diagnosed. That’s time he could spend with people who honestly need his assistance, and he resents the hell out of these hypochondriac asshats.

  17. I was so excited to see that you’d posted about Celiac! I’ve been gluten free for 7 years now. Whenever it feels like I’m the only college student that can’t eat pizza or drink beer, it’s great to see that I’m not alone and there are people out there advocating for me.

  18. From those of us with Celiac disease (me!), allergies to grains (me again!) or grain intolerance: Thanks Mrs. Wheaton!
    I was sick all through my teens and twenties and as a result of going undiagnosed by scores of doctors I developed other health problems. Early diagnosis is key!
    Newly diagnosed folks who are looking for recipes and resources should check out the following sites:
    http://www.CeliacTeen.com
    http://www.CeliacChicks.com
    http://www.SimplyGluten-Free.com
    http://www.GlutenFreeGirl.com
    http://www.GlutenFreeGoddess.blogspot.com
    http://www.Celiac.com
    http://www.GlutenFreeda.com

  19. Glad you are posting this. I have a friend who’s husband has suffered from this, and they just found out that their daughter also has it. We need to get awareness for these “unknowns” out there.
    My wife suffers from something else that is also not very well known, Corn Allergy, although they call it an “intolerance”. Some are so bad that they cannot touch plastic grocery bags (because they use corn starch on the plastic). The wife just can’t ingest it, or else she gets heart palpatations and the like
    On the downside, the FDA doesn’t require packaging to say it contains corn, like they do with wheat, soy, milk, and nuts.

  20. Thanks for this. I’m severely gluten intolerant (though not Celiac,) and recently my brother has determined that he is too. My friend’s kid (5 years old,) is Celiac, which they discovered when he became violently ill for weeks, but couldn’t determine a cause.
    Sadly, none of us were diagnosed by physicians. Instead we all self-diagnosed by means of suggestions from friends, after which we discussed the idea with our doctors.
    I’m glad to see someone talking about this in a non-fad way, as a real health issue.

  21. P.S. to poster Missy, above: MOST people with gluten intolerance are, unfortunately, self-diagnosed. They are certainly not hypochondriac asshats. They have often simply been unable to get a medical doctor to either administer testing, or offer a diagnosis of “gluten intolerance.” My medical doctor flat out said: “If you don’t have the antibodies, you don’t have a gluten issue,” which is demonstrably false.

  22. Source?
    The information I’ve found from a quick google implies that a gluten-free diet is not the cause of harm so much as how many people implement it.
    There seem to be four main complaints:
    1. Fake foods – gluten-free bread, cookies, etc. which use non-wheat flour, and sometimes excessive fats, sugar, and sodium. When eaten in excess, they can cause weight gain. Solution: Find real foods to eat that meet your nutritional needs more appropriately, use these replacement foods sparingly (especially if your goal is weight loss), and pay attention to their nutritional content.
    2. Lack of nutrients because wheat-containing foods have had vitamins and minerals added in. Solution: Eat natural sources of these nutrients, or take a multivitamin.
    3. Lack of fiber in replacement foods. Solution: Don’t eat too many replacement foods. Eat natural sources of fiber such as fruits and vegetables.
    4. Low blood sugar. Solution: Eat a non-gluten source of sugar, such as fruit. Also, eat protein, which tends to have a stablizing effect on blood sugar levels.
    Meats, vegetables, fruits, brown (whole grain) rice, nuts, seeds, and most foods with the exception of a few grains are naturally gluten-free, and it’s totally possible to make a very nutritionally adequate, tasty, satisfying diet out of them. It’s not gluten-free that is the problem, it’s assuming that something marked “gluten-free” is automatically healthy.

  23. I’ve got Celiac. I’m also pre-med. I underwent an intestinal biopsy (not a fun procedure) and they found the indicator damage. I also -had- the antibodies, but they’re just a “hey, you should check for intestinal damage” thing.
    And to be honest? I really DON’T CARE if people think it’s a fad for the rest of my life. What I care about is more gluten-free food hitting shelves, and what’s there improving in quality so I don’t miss the real thing. Companies will do that if there’s more people going gluten-free. SO IF THE WHOLE COUNTRY GOES GLUTEN FREE SO MUCH THE BETTER.
    Sorry, I get a little annoyed at people wanting celiac to make them special. It’s a mutation. Like lactose intolerance. If it becomes in-fashion to be gluten-free, more people will do it. More people doing it increases my options. Increased options is a GOOD THING.
    So yay for Chex going gluten-free. Yay for gluten-free being hip. If that goes FOREVER…future generations of celiacs thank you.

  24. Wil (and Wil’s mom), thank you SO much for this post. I found out about a year ago that I have gluten-intolerance (at the very least) when I did an elimination diet. My new doctor is running a Celiac profile test with the last batch of lab work that was sent in last week. This is such an important message to get out to the general public because it truly is the #1 disease you’ve never heard of. More and more I’m coming across people who know what I’m talking about. And I’m making friends who don’t know but truly want to know more about it.
    Like you, I’m appalled when I see news reports (nationwide ones, even) that tout the gluten-free diet as a “fad.” Or celebrities that are gf showing the viewers that they “live” in the special gf section of stores. There is so much more we can eat than just special processed gf foods (namely fruits, veggies, meat, poultry, fish, gf whole grains).
    I am sharing this post with ALL my friends on Facebook and my readers.
    Thank you again!

  25. Incidentally, I read the next passage, on how the Jews handle the same issue for foods containing gluten with religious significance… not only are they allowed to abstain from the gluten-containing food, they are actually forbidden to endanger their health just to fulfill a religious rule concerning food. Talk about total opposite stances.

  26. Thank you Wil and your Mom for sharing this information. A few years go (around age 34) I started having pain in all of my joints and developed carpal tunnel/RSI in both hands so bad that I could barely move them and was in constant pain. I was also flat broke so going to the doctor just wasn’t an option…so after doing tons of research I thought I might have a gluten sensitivity or some other food allergy. Since my body has never handled wheat or excessive grains very well (I gain weight fast if I eat even a modest amount)…I decided to completely eliminate gluten to see if that was the cause.
    I’m nearly positive that I don’t have a gluten allergy…especially after reading peoples stories here. But spending so much time checking and reading labels and being very careful with my diet…it has now stuck and I don’t have any cravings for wheat and I avoid anything with gluten in it. I hope that doesn’t make me an asshat as someone mentioned here…it just feels right to me and is helping me lose weight (as are many other changes to my diet as well as an increase in exercise). Eventually I want to get tested…but it sounds like if I had celiac I’d have more pronounced symptoms. I cured the carpal tunnel and my hands are much better…but there’s still something weird going on with my body that I hope to find the cause of eventually…thankfully stretching and daily Tai Chi keeps most of the pain away. ;)

  27. Hi Wil. Dunno if you’ll remember us, but you met my (now) wife and I at PAX East last year when she walked up to you and told you that she hated you for not replying to a tweet she sent you. She then proceeded to completely geek out at you and finally, me the totally shy dude, said howdy to you after she’d talked to you for a minute or two.
    But let me tell you (and your mom) my wife’s discovery that she had Celiac’s.
    Off and on, my wife has had health issues for the last seven years. Incredible cramps, terrible headaches, drowsiness, but mostly, she’d been through intestinal hell. This led to several dozen doctor’s visits which finally led her last doctor to recommend radical gynecological surgery. She thought about it, but finally decided to go for a second opinion. Said second opinion felt that the first doctor had no clue what he was talking about, that as far as he could tell she was healthy and he figured out that the pain she was experiencing came from her colon.
    After that, she went back to her PCP (an osteopath) who thought to test her for a million different tests, one of which was for Celiac’s but also consisted of catscans, x-rays, and even an MRI. Everything came back negative. The doctor finally ruled it as stress.
    The stress thing didn’t really sound right to us, but it was the best that we had at the time. We went to Gencon soon after and had a great time, but after dinner at the Ram Brewery (which consisted of a sandwich and a beer) she ended up passing out for two hours in our hotel room and she couldn’t fit in her corset for the dance that night, as her stomach had distended. This was really weird to us.
    The dots were finally connected when we had dinner at a friend’s house a month later, where he presented her some information on Celiac’s from Living Without, a magazine about living gluten free. Everything came together.
    It’s now a year and a half later, and a strict diet of gluten free food has made her healthier than I think she has been ever. She’s got more energy, she never gets headaches like she used to, and her whole body doesn’t ache if she’s been out all day. She used to have to walk around with braces on her knees, but since going GF, those are gone. But most happily, she gained and maintained weight, which she used to not be able to do.
    As the husband of someone with Celiac’s, it’s not hard to switch over to a GF diet. Hell, I do it without even thinking nowadays. You learn to check the labels, you learn to watch what you intake, and you learn that it’s not rude to ask the guys at the restaurant if they fry their fries in the same fryer as the fried chicken. Hell, gluten free pizza dough is delicious *and* fun to make!
    My wife wants me to point out that up to 25% of people with Celiac’s test negative when they have the blood test done like she did. She didn’t make it to the biopsy stage, which can also be negative, but would have hopefully showed that her colon which was *riddled* with ulcers by that point (the cause of her initial pain). The testing is far from accurate and it’s difficult when the only real indicator is switching over to a gluten free diet.
    You can point the blame for Celiac’s being “hip” on Elizabeth Hassleback, unfortunately. Her “G-Free” diet book is not only being billed as a diet book, but is also full of inaccuracies and reasons to be *ashamed* to be Celiac’s. She actually advocates switching *plates* with your husband, so that people think that you’ve eaten! Terrible, terrible.
    Take it from two people who have had Celiac’s radically change their lives, but for the better: if you have this disease, it’s not as scary as it sounds. It sounds like all of a sudden your life is going to change and you’re not going to be able to enjoy any of the things that you used to. That’s not the truth at all! We can go out to eat just as much as we want to (Wendy’s, Chik-Fila, Panera, PF Chang’s [who has an entire GF menu!]) but we eat in far more often because GF food is really tasty!
    If you’re curious about literature to read to get more educated, the Gluten Free for Dummies book is very educational. Just as educational are the gluten free girl blog (http://glutenfreegirl.com/) and Glutenista on Facebook.
    Wil, please tell your Mom that when my wife read this, she was really touched by it. Sometimes it’s hard to be Celiac, especially when it comes to having company over or going out to eat, and having there be a little bit more information out there about it does nothing but improve the situation. So honestly, from two folks living the life? Thanks.
    If these two second generation Italian kids can do it, anyone can.

  28. Celiac Sprue isn’t a wheat allergy. I hope I haven’t offended you by pointing it out, because this is a very common misconception. Most folks without Celiac confuse the two. Celiacs actually react to the glutens in wheat, rye, and barley. Abstaining from wheat is not enough.

  29. This is so weird to see this here today. My daughter was just diagnosed two days ago after having an endoscopy last week. It’s so horrifying, I can’t get my mind around all of it yet. My mother is crying every time I call her and we’re all trying to get a handle on it all. It makes a lot of sense, now, looking back on all of her symptoms. Maybe if there was more mainstream knowledge about it out there, I would have caught it before two years of testing for just about everything. Or maybe I should have just spent a couple of years searching the Web for her symptoms instead of trusting doctors to find out what was wrong. I don’t know.
    The problem from here on out is going to be trying to get people to understand. My friends have been telling me things like, “Oh, it’s fine, she can just get a hamburger without a bun when you eat out.” Um, no, it isn’t ok and she can’t do that. She can’t eat out at a restaurant again for the rest of her life. She hasn’t caught on to that quite yet, but she will in the next few years. She can’t go on her big class trip, she can’t go out to eat, she can’t go to other kids’ birthday parties and eat pizza and cake, and someday she won’t be able to let boys take her out to dinner. It isn’t anywhere near ok.

  30. As a celiac, thank you very very much.
    There are *some* people who use gluten-free as a fad diet, and they may well outnumber celiacs (plus those allergic to various gluten-filled grains). So long as it creates a demand for gluten-free food, I don’t care.
    Where it becomes a problem, as you note, when real medical conditions are blown off.
    I’d also like to give a shout-out to Dr. Murray’s work on celiac disease at the Mayo Clinic. Money shot: non-compliant celiac disease sufferers are four times likely to die early of all causes, even if they don’t know they’re celiac.
    http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/

  31. LS, here’s how I explain it:
    “Wheat dissolves my intestines.”
    Most people will understand that’s a Very Bad Thing.
    I never tell them it’s just an intolerance, nor do I say it’s an allergy — it’s neither. People don’t understand there’s wheat-based fillers and preservatives in practically everything (including hamburger unless you get it from the right places).
    She can eat out at restaurants, btw. I eat out all the time. You just have to be careful about it; PF Chang’s and Outback Steakhouse are two good chains that I’ve never had reactions from. There are also

  32. Kyerin –
    I am a Catholic with CD (as are my daughter and grandsons).
    You can get Low Gluten hosts here http://www.benedictinesisters.org/bread/low_gluten.php
    These are approved by the US Bishops. Check it out. I am EXTREMELY sensitive but use these 2-3 times a week. I also try to go up with the first communicants to avoid contamination on Priests hand.
    “Having reviewed the laboratory reports you sent, which set the amount of gluten in these altar breads at 0.01%, I am pleased to state that these special hosts are indeed made according to the requirements of both the Code of Canon Law (c.924) and the special considerations set out by Cardinal Joseph Ratzinger, Prefect for the Congregation for the Doctrine of Faith, in his July 24, 2003 letter to the Presidents of Episcopal Conferences (Prot. N. 89/78-17498) and may be validly used at Mass in the diocese of the United States with appropriate permission.”

  33. Wil & Wil’s Mom —
    Thank you, thank you for this post! I’ve battled chronic illness for years, was about to go on disability because of brain fog, insomnia lasting days at a time, massive fatigue, ADD — and then made the connection that not just wheat, in my case, but gluten, was poisoning my brain.
    I honestly believe I’m in the last leg of recovering from that illness, and the gluten damage. In the four months since I left gluten, I have enjoyed cooking again for the first time in years and written up twelve posts to help other people experiment with one month off gluten (there are even posts about desperate snacking and gluten-free alcohols, for those who think they can’t do without!)
    So — if you are trying to get someone to flirt with going off gluten, you might send them over to where I posted the articles, the blog for http://www.bookviewcafe.com . It starts here ( http://blog.bookviewcafe.com/2011/01/03/testing-the-waters/ ) or site search there for Let the Gluten Go and pick your topic.
    I’m back to writing SF and fantasy again, I hope for new readers, but those articles and other posts at my blog on macrobiotics, feeding your brain, etc. are my gift forward. Don’t waste any time, if there’s any history of gluten intolerance in your family. It may be effecting your brain, your heart, your joints — your entire future!
    I second the rec for Gluten-free Girl and the Chef‘s site — fun, interesting, and one awesome chocolate chip cookie recipe. The twelfth and last gluten-free blog I did has a lot of other great sites for GF cooking, shopping, restaurants etc.
    Rah, Wil’s Mom! And kudos to you both for making sure people know this is not the diet of the week — even if I’m trying to lure the hard cases into trying it by pointing out they may lose a lot of weight giving up gluten.
    As many as 42% of Americans may be gluten intolerant. Think of the health, the energy, our country could have, if these people all ate food that loves them instead of gluten.
    I’m sharing this link!

  34. My main doctor is an endocrinologist and deals with complicated health cases. She has several Celiac patients. She says that none of the current tests (other than a biopsy of the intestinal lining) are very reliable to indicating if someone has CD. She’s had patients that tested negative, but still had it. My doctor thinks I might have it, but have come up negative on two different types of antibody tests (saliva and I think the other was a blood test, but that was a while ago). The gluten free diet is tough in our modern world. I’ve done it for periods of time. Can’t say I’ve noticed all that much difference being on or off it.
    A lot of people also have lots of weird health problems due to an overly loose or tight ileocecal valve (the valve between the upper and lower intestines). I’ve had a lot of trouble with mine and that has caused some strange health problems.
    Some of our modern health problems can be a real pain. If you can’t just pop a pill for it, our modern medical system is often at a loss for really helping people with some of these problems.

  35. I’m now actually quite concerned for my mother. Here recently in the last year or so, she’s gone from being able to drink milk to developing full-on lactose intolerance (which from reading the comments here is a symptom of CD). I’m gonna press her to get tested, and I’m gonna get myself tested as well next doctor’s visit.
    Thanks Wil and Wil’s Mom!

  36. Hi Wil, Wil’s Mum, and Amy!
    Two years ago I was diagnosed with Coeliac Disease (yes, I’m one of those strange Commonwealth sorts) almost by accident. Looking back, however it explained all sorts of other problems (like low iron, and susceptibility to illness). Since then my elder brother has been scheduled for a test – with the irony being that I am adopted.
    Fortunately, I already had a number of friends with CD, and I cook for them occasionally, so the transition was pretty easy for me. Another fortunate thing is that I was diagnosed when I was. Visibility of CD in Australia is growing by leaps and bounds, and most restaurants can accommodate Coeliacs to some extent.
    One thing I would like to do is to name-drop the Coeliac Society of Western Australia ( http:// http://www.wa.coeliacsociety.com.au ), who provide a wonderful support network for Coeliacs over here.
    Thanks!

  37. Actually lactose intolerance is not so much a symptom of CD as a common co-intolerance. You can have one and not the other, but many coeliacs are also lactose intolerant.
    I count myself lucky that I dodged that particular bullet, as one of the results of my CD is a very low bone density from poor calcium absorption, so my diet over the past couple of years has featured a lot of milk!

  38. Oh I'm not offended at all.  In fact it just corrects what I was looking to learn.  The past girlfriend I mentioned had pretty severe Celiacs so I am a bit acquainted with the disease but I'm not as knowledgeable as I'd like to be.  I'm glad you answered my question because at least I can say that my current girlfriend doesn't have Celiacs as of yet but should probably still get tested.  :)

  39. All the best to your mom and sister. I am a 29-year-old woman from Finland and my mother has had celiac desease as long as I remember. I do remember a time when almost no-one had heard of it. But now, in 2011 Finland, everyone has heard of it. There are tons of gluten free options at the supermarkets and stores and there are at least one option available at every café. You are now at where we were 15-20 years ago. I do hope that there the awareness reaches more people in less time. All the best to You too, I’m a big fan :)

  40. Wow, for all your rampant cussing ways Mr. Wheaton, you really are a good son. Your family seems to be one huge bunch of overachievers, even if you have to go through very rough times, as many of us do, before experiencing success.
    I hope your Mom’s campaign to support CD research takes off. I’m also very glad I, my wife and sons and none of my relatives have it.
    As for journalists or rather tv reporters being lazy, inaccurate and generally not doing what was taught in journalism school when I was a kid, whoda thunk it! I mean, it’s not like we ever had laws like in Canada where being a lazy cuss and making stuff up was illegal! DOH! IT WAS AND BOUGHT OFF CONGRESSMEN GOT RID OF THAT LAW!

  41. Hi Wil and Mrs. Wheaton,
    Thank you for this post. During a period of unemployment a couple of years ago, I was fortunate enough to work with a career counselor who gave me some wonderful advice. We kept in touch after I was employed again and she discovered about a little more than a year ago that she has Celiac Disease. Since then, she has become incredibly active in raising awareness and has even gone so far as to become a Certified Health Coach. She’s doing some wonderful work in the NYC area.
    Ilise Ratner: Go With Your Gut
    http://www.go-with-your-gut.com

  42. if you eat and then feel not good, obviously it is something with the food, it could be wrong for you or just bad food.
    With celiac, it is now so much availablability of special products and there are alot of awareness too, as far as I can see here in Canada. It is frustrating when people who can eat anything just don’t understandnd. My child is allergic to many products, but the most difficult are milk protein and peas, some ignorant people think it’s intolerece or even my mental problem, say just take some pill and then eat, some cannot comprehend that allergy is serous and some stupid people think if milk is not ok, then cheese is ok, stupidity is the most frustrating factor., because you have to survive aroung people like that, you have to go to school where everybody ingests milk products , and you can’t even touch it, literally.
    If you listen to your body carefully, you would feel what food is good for you, and you would want to avoid food that is bad for you, with me , for example, I avoid meat, because it makes me feel sick not only because I cannot stand the concept of devouring somebody who had to be killed and was blinking their eyes in fear before slaughter, but also it just does not agree with my body, then I read one book about blood types and the food relations, I read that my blood type is vegetarian and the things that I like to eat match to what was writtien in the book that it’s good for me, so naturally your body knows what is best for you. And if your child does not want eat something -don’t force it! They might be intolrent. I knew a person who had celiac and none of her Italian (pasta, bread people) family believed her until there was official letter from doctor.
    Such little things make a total sence : rye bread is much better than wheat for some people , like me, and looking at the food ineraction with your body on molecular level it is easy to undwerstand why.
    As humans are different and have different blood types, they have different chemical make up and need different foods, what’s good for one, might be poison for other. With my child I make “conversation” with her immune system cells and milk protein and peanuts and peas and nuts and eggs, and other stuff, we “talk” and become friends so to speak with our “enemies”, we try to embrace the allergenic things as friendly substance and visualize one universe that we are in together, one mind, and that we are all connected at some deep level. This is not scientific so far, but personally it helps, it least to cope with it.

  43. I have celiac disease. My road to discovery was a long, painful one. Doctors actually made me sicker, for 50 years!!!
    I finally decided to give up gluten for 2 weeks, just to prove that it wasn’t my problem. Wrong! My health improved dramatically in those 2 weeks. That was 3 years ago. I am now very healthy and stronger than I’ve ever been. The gluten free blogging community saved my life. Now we’re all friends on facebook.
    Thanks to you and your mom for spreading the word. I wish there had been more clues out there when I was struggling. I hope some doctors read your blog.

  44. Thanks for the info Wil. I just e-mailed the contact info so I can arrange to air their PSA on our health network, HTV.
    Granted, we’re no CBS… but we do reach a lot of people.

  45. Thank you, Wil, and much thanks to your mom!
    I also have Celiac, and wasn’t diagnosed until a couple of years ago. I couldn’t believe the difference in my life switching to a GF diet made.
    Now I deal with people who don’t understand the consequences of cross-contamination. When I need to get the point across quickly, I say that I have severe allergy, even though that’s not the case. I’ve had people say to me “Oh, I just put a little bit of flour in there to thicken the soup up a bit, you shouldn’t be able to taste it at all!” not realizing that taste IS NOT THE ISSUE.
    (No, I’m not friends with those people anymore. I made it clear to them that they had poisoned me, and put my health in danger.)

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