Holy moly…is my inbox overstuffed. Lots of rants and lots of questions.
My sincere apologies to all those who have reached out to me for help/advice and have gotten nothing but silence in return.
Bad Gluten Dude.
Well…really just ungodly busy Gluten Dude. But I do feel bad.
So let’s get some of those questions answered. I hope.
Q: I’m 23 years old and was just diagnosed with celiac disease at the beginning of July 2013. It was a big shock because when I used to eat bread, pasta, etc. I never had any stomach problems or any other ‘common’ celiac symptoms. Anyways, I have been GF since my diagnosis. But, I am a waitress at a restaurant where they make pizza, pasta and a few other items. It is most definitely NOT gluten free. I was wondering if I should keep working there due to contamination issues: touching pizza, cleaning crumbs, etc. What are your thoughts on this?
If you can get another job, I would go for it. Touching gluten won’t hurt you (unless you have skin reactions to it of course) but I would assume there is some serious flour in the air. Like you said, you don’t get the symptoms, so you could be doing damage without knowing it. Put some feelers out there. Health comes first.
Q: My 30th birthday is coming up in mid-September and I’ve wanted to plan a big celebration. What has been planned for me is a dual-30th birthday BBQ for a friend and myself. I am the only celiac. My plan is to have my own food on a separate table or stashed hidden in the kitchen so nobody can cross-contaminate. I really want to have fun and for ONCE not feel like the lone ranger eating lettuce and homemade jerky (lol it’s happened before). Do you have any easy suggestions on how to survive a BBQ/potluck without having to give a speech to everyone?
Happy Birthday. I used to be 30. You wanna have fun at your own party, right? Then take the food worry out of the picture. Bring your own food. Stash it somewhere safe. No speeches necessary. You have an auto-immune disease. You don’t need to explain yourself. Have a great time.
Q: So I have not been completely tested yet but I think I may have celiac. The symptoms are terrifying for me, ranging from extreme mood swings (sometimes violent) to terrible depression and fatigue. I have no health insurance and am a young artist with an active lifestyle. The last few months have been completely crippling to me. I feel like just giving up. I can’t seem to eat anything without going numb in my extremities and feeling like total poop! I have no idea how this happened…it seemed to come on very quickly and the symptoms were so wide and varied that it is hard to keep track. How do I deal with this? How do I find out what is wrong with me? How do I get tested with no money? DUDE…I need help! I am so scared and alone.
You’re not alone. You’ve got your husband and an awesome community here for support. As for the money…you can either beg, borrow, or steal…or simply go 100% gluten free and see if you begin to feel better after a few months. Not everyone out there has gotten tested. Hang in there…better days ahead.
Q: I have still not been diagnosed but am 99% positive I have Celiac disease. Do you know if any kind of doctor can order the test for the Celiac gene? And what test do I ask for? When I have told other doctors I have had an endoscopy and colonoscopy which came back negative for Celiac, the doctors say “well you definitely don’t have it then” but I have heard from other Celiacs that this is not always the case, especially considering that I was not on gluten when I had both tests done.
Not sure why you want to get tested for the celiac gene if you are pretty convinced you do indeed have celiac. The test for celiac itself is blood work followed by an endoscopy. And yes…your other tests wouldn’t come back accurate because you weren’t eating gluten free at the time. If you feel like you need an actual diagnosis, eat gluten for a month and get yourself tested. Is it worth it? Only you can answer that.
Q: I had the IgA tissue transglutaminase (tTGa) test and the result was a high positive. I then had the biopsy of small intestine which came back negative (4 samples were taken). I took gluten foods till biopsy. Can I now say that I do not have Celiac disease? The doctor says I don’t have it, but I have nagging doubts. I’m happy to be gluten free, but if I don’t have celiac it would be unnecessary for me to be worrying about cross contamination and all the stresses which go along with that. It would be good to know if anyone else has a similar situation, or any advice in how to go forward.
Yikes…that’s a serious medical question. While I’d love to help…I simply cannot tell you which way to go. I am not remotely qualified enough. Anybody else in the community want to take a stab at this one??
Q: I was diagnosed with celiac disease my senior year of high school. I abstained for a while but as t back to my nasty gluteny ways. Thanks to your article about using my mind to not WANT gluten instead of not being able to HAVE gluten, my life has literally changed. Thank you, thank you, thank you, from the bottom of my gluten-free heart. I’m feeling better, sleeping better, not hurting for “no reason,” and I have my life back. Thank you.
You are quite welcome. (God…I love getting emails like this!)
Q: Severe unsteadiness dizziness and head bobbing for 3 years 24/7. I’ve only been on diet for 1 week. How long should it take for me to see a diminish in the vertigo and how long until its completely gone?!
I think I need to go to med school before the next mailbag.
Q: As a restaurant Chef for many years our industry is still very much in the novice stage of understanding celiac disease. There are many restaurants whose heart is in the right place in offering gluten free menu items but are not trained or required by our industry to understand exactly how cross contamination works. You would think it would be in an updated version of the NRA Serv Safe exam one has to take and have the certificate hanging in the restaurant. It’s not. Not even a mention in the required health regulations. In any event I look forward in helping spread the word with you and finding those places that do do the right think. If there is a way to join up and get the National Restaurant Association to make sure a there is a section in the Serv Safe examination regarding gluten disease I am open to ideas.
Ok…that email scares the ever living bejeezus out of me. Not trained or even required to know how cross-contamination works. Man…do we have a long way to go. I am open to ideas as well.
Q: I need some advice. I have been diagnosed with Celiac Disease for little over a year now and still consider myself a newbie when it comes to it. It might be my fault but lately my family has been getting frustrated with me whenever I double check how they are making dinner or lunch etc. I know if I were in their shoes I would be getting annoyed too. I think it’s because whenever I let someone else make something whether it is at a family members house or a restaurant, I get nervous that I am going to get sick. Does it get better as the years go on or will I always be worried about being glutened?
It gets better I promise. But one thing you need to do immediately…STOP BLAMING YOURSELF. You did not pick this disease. You have every damn right to be as careful as humanly possible about what goes into your body. Make sure your family knows that.
Q: I have CD and I’ve been gluten free for almost 3 months now, and I feel GREAT! Never felt better. But as I get ready for this next school year, living in a house with 4 roommates who are not gluten free… I was wondering if you had any suggestions? Especially since I’m a broke college kid who is going to have to seriously work my ass off just to afford the ridiculously expensive gluten free food. Another question I have… I’ve been reading online about how some people have to use gluten free soaps, makeup, lotion, etc. But I thought that gluten couldn’t be absorbed through the skin, and my gastro doctor never mentioned having to be careful about this stuff… I use gluten free chapstick, that makes sense, you could get it in your mouth… But other than that, is it really necessary?
First question: Tough one. In college, I pretty much lived on gluten. Does your college offer any kind of eating plan you could sign up for and if so, do they offer gluten-free foods? What about getting a separate small fridge for yourself and stock it with foods that are safe to eat? And since a lot of “gluten-free” foods are indeed expensive, your best bet is stick with the naturally gluten free stuff.
Second question: I personally don’t find it necessary. Some celiacs have skin reactions. I don’t. Listen to your body. Sure beats listening to me.
Q: I was diagnosed with a severe gluten allergy about 2 months ago and it has been absolutely awful. I thought I would feel better right away, but it seems that just like you, I fell into the “buy all of the gluten free products and expect to be fine” rut. I’m also a vegan so I”m pretty certain that my insides might actually be dying. I’ve felt like crap ever since my diagnosis and I’m getting so tired of it. I’ve had maybe 3 days where I’ve felt good… for me I actually feel lighter. But every other day I feel like a bloated mess. I don’t really even know if I have a specific question… I guess I just figured you could offer me some words of advice.
Patience. Lots and lots of patience. Everyone heals differently. Stay the course…your body will eventually thank you for it.
Q: I am a 44 year old mom (of 11 year old twins) and teacher, and I have been experiencing health problems on and off since my pregnancy–most of which have been blamed on stress, IBS, etc. While I was pregnant, I began to develop some food intolerances, first egg and then artificial sweeteners. These are now extremely severe. I lost my gallbladder four years ago, but I have been worse since its removal. For the past year, I have dealt with near-constant right rib cage, side, and low back pain, and now I have developed iron-deficiency anemia. I also have extreme fatigue and lately quite of bit of dizziness, and I have had a severe recurring eye infection over the past several months. I have driven my poor husband crazy with my depression/anxiety. I spent the summer being scoped (both ends) after positive fecal blood tests–such fun! My biopsies were negative for celiac, but I do have gastritis. My doctor just thinks I need to continue with my PPI treatment, but I am seriously considering at least a trial run of the gluten free diet, and fortunately my husband is very supportive. Do you feel gluten free has a shot of helping me, even with the negative biopsies? I would love to get off the PPI drugs forever–I’m scared of them. Thanks for reading this long ramble, and thanks in advance for any advice.
Dr. Dude…paging Dr. Dude. I wish I could offer you some pearls of wisdom. All I can say is what have you got to lose, right? Give it up for a month and see if it helps. Wishing you health.
Q: My husband and I are planning our first trip without the kids. We are thinking Mexico or the Carribean. I’d prefer an all inclusive. I’m wondering if you have any recommendations for somewhere gf friendly or if you could pose the question to your followers. I’ve waited 14 years for this and I’d really like to relax and let the food be a non-issue if possible.
Something to consider: rent a private house and bring in a chef for the week. That’s what we’ve done the past two years and it was incredible from every perspective. And no food worries.
Q: I had a whole weekend of different family,friends and co-worker events that were all great. Problem is… Even though I didn’t touch gluten I feel like… well you know, and I will for days. I have really understanding people around me when it comes to gluten. What they don’t understand is that 62 years of undiagnosed Celiac has done a number on my whole digestive system. It’s often hard for me to find anything I can tolerate and it usually only takes a few bites to know I’m not going to be able to eat something. End result…my understanding friends and family are beginning to think I am just too picky or paranoid.
You cannot control what other people think. Keep your focus on your health. If they think you are being too picky, they need to step it up.
Q: I’ve had many of the symptoms for years but only started being sick two years ago which is when I was diagnosed with Coeliac. I have had Petit Mal since 14 and have seizures in an approximate six week cycle. Any idea if being Coeliac could have anything to do with this?
Celiac manifests itself in a lot of ways. Is it possible? Sure.
Q: I was diagnosed with Celiac about a year ago and I am not feeling much better with a gluten free diet. I’m really trying to education myself more cause I feel as though I am missing a key idea or something. I found your blog in the process and love it. You say some things that I have been thinking…it’s great. However, a friend of mine just gave me the link to this website: http://www.glutenfreesociety.org/. He is saying that gluten is in all grains like corn and rice in addition to wheat, rye, barley, malt, and oats. Do you think so too? He says that we should only eat meats, fruit, and vegetables. I was wondering if you think this is correct and if it is worth subscribing to his site?
I don’t know anything about that site. Some people sell fear. I’m not saying he does but you do need to be careful who you listen to and what their ultimate purpose is. There is gluten in other grains, but it is not the same gluten that is dangerous to celiacs. Some, like myself, have given up other grains over the years as they just didn’t sit well with me. But do not confuse them with the gluten in wheat, barley and rye. And yes…you can never go wrong with meat, fruit and veggies.
Q: Hi Dude. I have been enjoying your blog since being diagnosed in May. I appreciate your straight forward approach without sugar coating things or using fear tactics. I have been trying to adapt and adjust to this new lifestyle and I was curios how you went about getting over the fear of eating out and how your wife and children handled the adjustments.
My entire family went gluten-free the day I was diagnosed. Oh…wait a minute…no they didn’t 😉
Mrs. Dude was (and is) an absolute rock. She embraced the diagnosis and continues to be my biggest advocate. On days where I may get a tad lazy (i.e. putting my hands in the ice), she will keep on top of me. I understand that not everyone has a Mrs. Dude in their life. I’d let you borrow mine, but I’m kind of attached to her. As far as eating out, it took me awhile. I have vivid memories of my first few dinners out. I was terrified…for my health and for my future. But like anything else, it mellows with age. You learn the ropes. Learn the questions to ask. And accept that fact that any time you eat out, there is a risk involved. The life of a celiac.
Q: Is semen gluten free?
Oh wait…we already covered that one 😉
Q: Saw your blog on semen but what about the other way around? I am very nervous about oral sex with women. It seriously cramps my style here. There is so much more going on down there than with us guys. And I have searched and searched with no definitive answer. Have you seen anything? Personal experience?
Personal experience? Ummm…yes?
As far as I know, it goes the same both ways. You’re safe.
Q: Dude, I am President of the Kentucky chapter of the Celiac Disease Foundation. And I’m not saying that to brag, but rather to give all possible punch to my next statement: You have the finest GF blog on the net, hands down!
[Big old smile!!]