Remember when you were younger and you were expecting a letter in the mail? And you waited and waited for the mailman to come? And then he finally came but there was nothing there for you? And so you had to wait another 24 agonizing hours for him to come the next day? And this goes on day after day after day and then you realize that nobody is going to write you back?
Anyway, I get lots and lots of emails. And I try my best to respond to each one but sometimes life gets in the way and I get backlogged. And right now, boy am I backlogged.
So as of today, I am starting a new feature called “The Gluten Dude Mailbag” where I will do my best to answer all of your questions in one long blog post. Hang with me…I’ll be as entertaining and educational as possible.
Ok, let’s do this.
Q: I have a question. I just read your celiac symptom list, and I THANK YOU for such a comprehensive list! I haven’t been tested, but I have most of the symptoms on this list. My question is, shouldn’t these symptoms have cleared up? I have been gluten free for 4 years now.
You’d like to think so, wouldn’t you? The fact is, many celiacs still suffer symptoms long after going gluten-free. It could be your body is still healing. It could be your getting glutened somehow. Or some of the symptoms may even be from something non-celiac related. Stay the course.
Q: I am very newly diagnosed with Celiac. I’ve been so, so sick and in debilitating pain for so long, I’ve lost jobs due to poor attendance (hospital visits). I had to move myself and mt two teenage children in with my mother and stepfather, who have been amazing, and mostly supportive. They provide almost all of the financial support for us, thank God. But since my diagnosis, and particularly since I’ve slowly started feeling better, I’ve become “obsessive” about living gluten free. People do all but roll their eyes when I talk about it, even if it’s just to talk about a great price I found on a particular product. My mother, understandably, is very stressed, and sometimes says she’s just sick of hearing about it. As much as I’m grateful for her, and as much as I’m starting to feel better, I’m also starting to feel guilty, at times near tears, because I know no one “gets” it, and it hurts me that they become so stressed from me talking about it. Sigh.
Honestly, you may want to tone down the gluten talk a bit. Personally, I hate talking about gluten. Good thing I have a blog then?? We all get the eye rolls. Don’t beat yourself up too badly, but you may want to read some of the signals your getting. There are lots of other things to talk about. Being obsessed over anything is not healthy…except the TV show “Lost”. I still can’t believe they killed Charlie!!!!
Q: GD- I’m tired…I’m 46 and I don’t know how to do this. We love to travel, we love to go out, but my husband will not go gluten free. He does try to watch things for me. It feels like my family is upset at the extra steps it takes. I don’t want to limit them. I just tell them, I can find something to eat anywhere so its ok. If I eat bad then in a few hours it feels like I have been breathing harsh chemicals. My mouth gets sores in the corner of my mouth and can bleed. For the past week I have stopped eating everything except eggs and bacon just to start at a base line.. but somehow I still hurt some days…. so I just can’t figure out what is good… what is not… and what to do. We are so used to doing what is the easiest just go and pick up dinner. but now i can’t. Any advice?
Your life is different now and everybody needs to adjust to this. It’s just the way it is. Your husband does not need to go gluten-free but he needs to be 100% on board with your needs. And you can’t find something to eat anywhere. That’s just not reality. I know you’re tired and I know if sucks…but you are going to have to be stronger if you want to feel better.
Q: Hi Dude. Your blog is such a wonderful source of information. THANKS!! Here’s my story: Sick since childhood with strange symptoms, called a hypochondriac by my family, halfway convinced it was all in my head, etc, etc…UNTIL around age 19 when my body really started breaking down. About a year ago I made the gluten connection and stopped immediately. It was life changing. I’m infinitely, delightfully BETTER without gluten in my diet. BUT, I am now interested in seeking a diagnosis. My question is this: given my health history, do you think it’s possible that my doctor may choose to go ahead with an endoscopy before my blood would test positive for IgA (is that correct?) How long does it take, upon re-introduction of gluten into the diet, for damage to the villi to occur? Or is a positive blood panel contingent upon having damage to the small intestine?
Great question. I am very hesitant to give medical advice on this site. I’m just a dude with a disease. But from what I’ve read, you need to be eating gluten for about a month to get an accurate diagnosis. And it’s usually blood work followed by an endoscopy. I don’t know of any other way.
Q: Hi, great stuff here, wish I had discovered it sooner. I am coming up on two years since my diagnosis. My question is about Celiac and bursitis. I finally feel well enough to exercise, but have been plagued with bursitis in my shoulder and persistent aches in my knees. Doc says “sure, there may be a connection, but if you are sticking to a GF diet I doubt it. Here is a referral to the orthopedist.” Orthopedist says, “It is bursitis, it will go away, or I can give you a cortisone shot.” I am wondering if others have experienced persistent bursitis and if they have thoughts about managing, or, even better, healing that don’t involve steriod injections. Or if this is just how it goes from now on? Many, many thanks!
I have not been diagnosed with bursitis but joint/muscle pain is a very common celiac symptom. I will say this…I have pretty bad elbow pain. I’ve gotten a cortisone shot to help alleviate the pain. OOOOOOUUUUUUCCCCCCHHHHH! The shot was so brutal I told him not to do my second elbow. Which is the lesser of two evils?
Q: I’m 19 years old and have been diagnosed with celiac disease. Although my parents are understanding, they don’t understand the extremes that I need to go to too ensure that my diet is completely gluten free. I’ve gotten to the point where I cannot cook my own food as my parents won’t make room for me to buy my own cooking equipment so I’m living off gluten free rice crackers and fruit/vegetables. It’s gotten to the point where I am considering quitting university and moving out in order to ensure I don’t get sick again. Please help, I don’t know what to do.
Oh boy…do I hate hearing this. And I hear it all the dang time. If your parents simply will not help you, you need to find a way to take care of yourself. Does the university offer a gluten-free meal option? Do you have the funds to get a small apartment? Are your parents open to being educated? If you run the cookware thru the dishwasher, you can still use it. You must find a way…keep me posted.
Q: Hey there! I thought I’d ask you because, well, you seem to know your stuff. My son, who is 15, was diagnosed with Celiac at 7 years old. Long story short, the specialist that we went to recently said that his ptt levels are suppose to be 20 or below, but are above 150. Now, because this was left in a voice message to me, I didn’t get to ask the questions that I wanted to ask. But the message said it means he is getting way to much gluten in his diet. We have caught him “cheating” and he knows the effects, but sometimes he doesn’t experience physical reactions, which is leading us to believe he doesn’t think it’s that serious. How do we get him to take it more seriously?
Some celiacs don’t feel the symptoms so they don’t think they aren’t doing any damage. And at age 15, I can see why he would be tempted to cheat. But you have to get across to him that he is setting himself up for a short life of misery if he doesn’t get his sh*t together pronto. Every time he eats gluten, he is poisoning himself and what’s happening to his insides ain’t pretty. Eventually, he’ll begin to “feel” it and who knows how much damage will already have been done.
Q: I’ve had Celiac Disease for 2 years now. And now more than ever, I feel this enormous urge to eat gluten…mostly things like a simple sandwich or a piece of cheesy bread or something. Do you have these cravings? If so, how do you deal with it? Sometimes the urge is so much that I actually will give in and have a sandwich (with regular bread) or a couple graham crackers. I know what it does to me and I know I feel like shit afterwards, but I do it anyway. And to top it off, I am a nurse!
Tough love time…stop eating gluten. Period. We all do it. You can do it too.
Q: How about starting a restaurant thank you note campaign? If we write a notes with the theme of…”Thank you for the Gluten free hospitality… While many currently choose to eat gluten free for a variety of reasons, I have celiac so gluten makes me very sick, more so than you can imagine…When I visited your restaurant you were so kind to… please post this note for your staff to know how much they are appreciated.” Just a thought. My mom taught me to write thank you notes for everything and I like that idea for a celiac awareness campaign. Keep up the good work. You’re our hero!
You’re mom was smart. And so are you. I LOVE this idea.
Q: Prior to being diagnosed with celiac (3 years ago), i spent a majority of my twenties trying to figure out what was wrong with me and why i felt so sick (muscle aches, swelling, gi problems, extreme fatigue, brain fog etc). In short, I became the poster child for “wellness” – drank nearly a gallon of water everyday, adopted the “Eat to Live” lifestyle (no salt, no oil, lots of fresh fruits and vegetables, limited grains) and did high intensity cardio workouts 5x/week. The celiac diagnosis was a blessing in disguise and going gluten free, of course, did wonders for my health. Over time, however, I’ve developed sort of a resentment. I don’t crave gluten at all… and I’ve never cheated. But now that i know that all that healthy living made no difference in my condition (i would’ve been sick regardless of what i did), I’ve developed an attitude as if i have to “make up” for all the lost years i spent restricting myself from bad food, eating super healthy and still feeling sick. I currently consume the same amount of calories as i used to (possibly more sometimes), but now an average day consist of potato chips, soda, peanut m and ms, red bull, hershey kisses, popcorn and cheese. Just wondering if you (or anyone else) has experienced this and if there is any information out there to scare me back into being the healthy person I once was.
Wow…that’s an interesting question. You need to separate the fact that you were eating healthy from the fact that you have celiac disease. They have nothing to do with each other. Eating healthy is the absolute best thing you can do for your body. There is no need to make up for lost time. You were treating your body like it should be treated. My guess is that most of the time you feel like crap now. That’s because you’re eating crap. Why is this a good thing? Be good to yourself.
Q: I am so confused and frustrated. I was diagnosed with celiac in March of 2012. I was definitely relieved to at least have a name for what was causing me so much pain. I went gluten free and felt better for a while, but recently have been having stomach symptoms again (bad pain in upper left side, under rib cage.) I also changed jobs and insurance which meant changing GI docs. When meeting with the NP, apparently the doctors do not meet with new patients there, she questioned my diagnosis as my old doc refused to send my records over. After a very traumatic experience, including waking up in the middle of the scope (yikes!) I was told by the new doc that there was no evidence of the disease, although he only took 1 biopsy. My question I guess is could this mean that I was initially mis-diagnosed, or maybe that my intestines are fully healed after a year, or just that the doctor did not take enough samples?
Odds are your intestines have healed so the biopsy would not show signs of celiac. Don’t they teach this in Celiac 101??? So frustrating.
Q: I was diagnosed with celiac disease about 2 years ago. My main obstacle at the moment lies with my job. I work at Bill Miller BBQ. And we make home made fried chicken/strips/chicken fried steak etc. So the gluten is in the air around me. When I go to certain areas of the restaurant I always hold my breath and that has made a huge difference. But I was recently promoted to staff leader and there was a lot of controversy about that at my restaurant because everyone knew that I could not perform every task asked of me like making the fried chicken and that was a requirement of being staff leader. My managers were just going to keep me off of that position they understand that my disease does not affect my abilities to be a good manager as long as I’m careful which I am. I’ve only had an attack so bad that I had to leave work once and I’ve been there 7 months. But anyways co-workers were upset and I became angry at my disease for holding me back at a job I was thriving at. So I found a solution to my problem. Motorcycle goggles to protect my eyes and rz motocross mask (meant to filter out dust and dirt) for when I am asked to prepare the fried foods. I have used it once and seemed to have no reaction.I follow a very very strict gluten free diet I have not purposefully ingested gluten in over a year. I know the obvious answer is to just get a different job but I really like my job. So besides short term brain fog and digestive problems what are my possible long term consequences if I don’t find other means of employment?
Hmmmm…you like your job yet it might make you sick. It sounds to me like you are taking all the precautions to keep your job and stay healthy. But that being said, you’ve got some nice experience under your belt and there are lots of restaurants out there where you could work (I would think). Is this a career at Bill Miller? Then it’s something to consider. If it’s just a gig to hold you over, than I would make a change.
Q: Hey Gluten Dude – Although I’m a 41 year old wife and mother of three, I do not dream of diamonds, expensive shoes or vacations. Instead, I dream of attending the International Celiac Disease Symposium in Chicago this September. Who knew that this would be my dream??? Having two of our three children and myself diagnosed two years ago, now means that I find all things Celiac related to be fascinating! So Celiac has broken the Krussel bank but I’m bound and determined to get my tail to Chi town. Do you know of any cheapskate ways to attend? Hell, I’d even dress up as the Udi’s mascot if it means I can sit in on the sessions!!! There is a session that addresses celiacs that aren’t responding well despite a strict gluten free diet, and that describes our 8 year old perfectly. Let me know if you have any creative ideas or secret passes! I greatly appreciate everything you do for our community!!!
I will open this up to everyone out there. Any creative ideas???
Q: Hey Gluten Dude, my daughter has celiac disease too. Will you marry her?
I love this community!!