After a few tough weeks, I really wanted to post something positive today. Nothing about the media. Nothing about my health. Nothing about the trolls. Nothing about Henrik Lundqvist being out for 4 weeks.
Hmmm…but what could I write about??
Maybe, just maybe, I’ll receive an email from a fellow celiac that will make me smile ear to ear.
Maybe, just maybe, the email will teach us all a lesson on how to keep positive attitude when it comes to celiac.
And maybe, just maybe, this person will live in a country where perhaps it’s not so easy to keep a positive attitude about anything.
May I introduce to you Vic from Afghanistan. This is his celiac diagnosis story. It’s so awesome.
I was diagnosed with celiac December 28th, 2012. I was 51 years old. I was set in my ways. I was pissed. I called my wife and told her, “Screw this guy. I don’t care how many tests he had that showed I was positive, I’m getting a second opinion.”
I ranted for a while and she listened patiently then I hung up.
A few minutes later she called me back. “We can do this,” she told me. “There’s a bunch of stuff online that’s gluten free that we can buy and have shipped here if the grocery stores don’t have what we need. In fact it might be kind of fun. I get to learn how to cook all over again.” (Underestimating my wife was the other disease I had back in 2012) “Oh and there’s gluten free beer on the market and according to this site, wine and bourbon are gluten free.”
Then she very firmly said, “You’ve been really sick for two years. We have to try something.”
A month after I was diagnosed my daughter had the tests. They were positive. Then my other daughter and my mother (who was 88 at the time) were diagnosed.
I didn’t know it then, but December 28, 2012, the day of my celiac diagnosis, was probably one of the best days of my life.
Since then I’ve learned a lot:
- I was a helluva lot sicker than I thought I was. In fact I didn’t realize how sick I was until I went gluten free and started feeling better.
- I had stopped thinking about what I was eating. I was the kind of guy who would eat a Big Mac for a midafternoon snack. That stopped. Celiac aside, my diet was going to end my life a lot sooner than necessary.
- We stopped mindlessly going to restaurants. We now eat at home. Going out is a treat we enjoy; not a lazy alternative to not cooking.
- And we started cooking again… and when I say we, I mean my wife. Our food was made at home from fresh ingredients and tasted really good again.
- The online GF community is incredibly helpful and not filled with the huge number of wing nuts other online communities seem to be overwhelmed by (Google “over 50 male weight training” and be prepared for stupid).
- My wife is brilliant, hardworking, and one of the most caring people I know. I may have forgotten that.
Once I had the energy to get off the couch we started going back to the gym. We started running 5k’s (and when I say I “ran” a 5k, I’m being generous). We became active again and we started living. Pushing doctors and forcing them to have the conversation with my daughters and my mother have significantly changed the quality of their lives. A year ago we were worried my mother wouldn’t make her 90th birthday. That’s in two weeks and she sounds and looks better than she has in years.
I work for the government and right now I’m on assignment at a military camp outside of Kabul, Afghanistan. I’m in the gym every day and very few days go by when I don’t have a soldier or Marine half my age tell me something like, “You’re shredding it in here, sir.” I don’t know what that means but I think it’s a compliment. Yes, I have to be incredibly careful about what I eat in the mess hall but I’ve been two months in country this trip and no problems yet.
Celiac disease has been hard. When I get glutened my reaction now isn’t subtle, it’s violent and painful. I have to watch every single thing I eat all the time and I wouldn’t wish celiac disease on anyone but if I’m being honest, getting diagnosed saved my life in about 10 different ways.
Oh, and once I started eating gluten free I started getting better in about three days. I never did get that second opinion.
I know you’ve had a tough week but you’ve helped me and you’re one of my favorite sites. You’ve helped make this transition positive. Don’t ever forget what Jeff Lebowski told us years ago, “The Dude Abides.”
Vic
Kabul, Afghanistan
Love his attitude. Love his sense of humor. Love his wife.
Like when Joey found his hand twin, I may have found my celiac twin.
What was your celiac diagnosis like? Was it the best day of your life?
I loved this letter. He is telling all of our stories, well, at least mine then. I needed that this horrible Monday morning.
Thanks.
Glad I could help the Monday blues.
Yes! I probably could have written this (except for the wife thing- gotta get around to that one day). That clarity of mind that comes from accepting your condition and then getting on with your life is liberating.
Oh and LGR! It’s only a month, Dude. Talbot can keep them in the running… I hope.
I hope so too…but we’re already 0-2 without him.
I feel the same way. I was diagnosed a year ago last month. My diagnosis process was easy; I was lucky to have a great doc who recognized it right off the bat. Actually what he said was, “you either have celiac disease or colon cancer, but I bet it’s celiac.”So yes, as a mom of young kiddos, I was so thankful that celiac was my diagnosis. I was SO sick before my diagnosis, my trip to Napa in November, filled with reservations at Michelin star restaurants was ruined by tummy upset, GERD, and other unmentionables. Fast forward a year, I’m happy and feeling great; the three herniated disks in my neck which I used to pop pill after pill for haven’t bugged me in months. Who would have known changing my diet would net such a positive effect on a whole host of ailments I never previously tied together? I wouldn’t wish it on anyone else; my 5yo son has all of the genes so I monitor him closely, and yes, every time he gets a tummy bug I worry more than most moms. But as diseases go, it’s manageable and so much easier than a lot of “underlying health conditions” which a lot of people deal with on a daily basis. I’m right there with you all, thankful for my diagnosis; thankful for good docs, great friends who throw GF surprise 30th bday parties, family who makes GF Thanksgiving treats, and ready to kick life into high gear. Come at me Monday!
Great email (and wife) Vic!
I was 52 yrs old on not my “Best Day” but my “Gratest, as in grateful to still be alive, Day” which was Monday, November 19, 2012 when I finally heard gluten was culprit killing me.
Vic, you & I must’ve hit some sort of Expiration Date in our 50’s. I didn’t have the energy to be pissed. Got my formal CD Dx after $20,000+ med bills later on January 29, 2013.
Now after 70,243,200 seconds (813 days), not that I’m counting or anything, my current personal theme song is:
https://m.youtube.com/watch?v=FscIgtDJFXg
Hope y’all have a great week!
Hap
What a happy letter…positive vibes on a dreary Monday morning. Love it..!
I love this too. Maybe this is my own revisionist history, because I’ve been gluten free for 5 years now, but I also remember when realizing it was about food (because I also need to be dairy/soy/corn free) I was so relieved. I felt so good a few days after going gluten/dairy free I felt like I was 20 again (wasn’t even close to 20 five years ago). What a great and wonderful post! It does feel so good to finally have answers and realize you are not insane.
Keep sharing the joy Gluten Dude. We have our days in the community of outrage, anger and frustration but MAN can we come together in the positive and joy. Love the message, best wishes to Vic!
What an awesome letter! I love the attitude and the positivity and the way he nailed why your blog is so important. I am in Germany reading your articles and they’ve helped me so much. With celiac disease it is very easy to feel left out and different from everyone else, but your website creates this place where I feel included and understood and want to yell ‘Yes, exactly. Thank you!’ with every article I read.
YES! It was truly the best day. My mom was diagnosed back in 2011, and I am as the saying goes ‘my mother’s daughter’. Just like her. She begged me to get tested or even go GF (I had no insurance or $$ for testing at that time), and get my kids tested too. I halfheartedly asked our family Dr about it, he explained it would cost me, A LOT, and that my kids insurance (they were on Medicaid back then because I got so sick I couldn’t work) would never agree to test them, because although they were sickly, and had a lot of symptoms, neither qualified as failure to thrive. {I don’t understand this one, my son was born at 40% and by age 4, was down “Below 5th%”; my daughter was born in 90% and by age 3 was down to 40%) How is that not failure to thrive??} So, we never got the testing. It took me over a year to actually listen to my mom and try GF, {My Dr agreed I should try it even though I couldn’t get tested}, then it took 6 more months for me to stop cheating. After about 3 months of not cheating anymore, I began feeling a million times better, and I was able to wean off SEVEN prescription meds. My husband was not super interested in putting the kids GF, even though our Dr thought we should try it, I told him “If I’m wrong, and they eat GF, it wont hurt them; If your wrong, and they don’t, it may kill them, or they’ll grow up and wind up like me.” He agreed, and they went totally GF. My son is back up to 10% and my daughter quit dropping; my daughters hair had never grown, it is now almost to her behind. Both used to get sick constantly, my son missed something like 18 days of school in the first half of 1st grade before GF. Now, both kids miss 1 day or so, and my sons even gotten perfect attendance twice. After them being GF for 6 months, our Dr apologized to me for not pushing testing on them. He says we definitely have Celiac, but legally, he cannot write the diagnosis down on our charts. He said if we needed it, he would fight to get at least the kids tested, or me now since I have insurance, but that would require us eating gluten, and he wouldn’t suggest we go back. And I would never do that to my kids.
My day of diagnosis was not the best day of my life, but I agree with Vic – Dude, you really helped me in my moment of need. So many of the forums are filled with desperate people willing to try or believe anything to help them, but you have a critical eye and helped me calm down and not freak out about every little thing.
Dude, you help debunk a bit of madness one post at a time. It’s critical to have guys like you out there with good SEO to help combat the panic and help newbies believe that yes, it’s possible to survive and thrive with celiac disease.
Great story that chased away my case of the Mondays.
It was a day I will never forget. And yes, it was the best day of my life. I was, literally, dying. When the gastro told me what I had, at first was just shocked that I, totally normal, not outstanding in any way me, had a “rare” disease. Then, the irony that the “staff of life” had been killing me made me laugh out loud. My first thought was, “it WAS the wheat thins!” Incredulous as that had seemed when I got violently ill after eating just wheat thins, it now all made sense. And I wasn’t going to die. And I might even get my ability to add and subtract, to recall words, to remember where I was, back. That was joyful. Beyond joyful. After 15 years, it is sometimes frustrating for me to have to be so “monkish” about my food. But I can live with that. Literally.
October 5, 2011. One of the best days of my life too. Just in time to catch the “GlutenDude Show” from the very beginning! Awesome!!
Too funny. But yeah…I started this site right around that time. Thanks for hanging with me.
I’m writing this from British Columbia, where today we’re enjoying our annual statutory Family Day holiday. For me, no better day than today to hear such a great family story!
I always want to say that the best day of my life was when my soon-to-be husband asked me to marry him, but then I realize if I hadn’t gotten my diagnosis when I did I probably wouldn’t have been alive to even meet him. So yes, the day I was diagnosed was definitely the best day of my life!
So well said.
So well said.
Howdy!
I had been sick for my entire life, and in the last 20 years had become medically fragile. Hubby pushed me to try one more doctor, hoping that someone could finally figure out what was wrong with me. Sitting next to the doctors desk, she took one look at me and told me my illness was food based. After the tests came back positive for celiacs and several food allergies, she gave me a don’t ever never eat list and sent me home, telling me that food would be both my poison and my way to health.
For a while when I grocery shopped I took my list with me, to help remember what not to eat. For some odd reason, I kept forgetting not to eat eggs. Within a month I felt so much better it was amazing. AMAZING! Its been a wee bit over 2 years now, and my immune system is back on track and working like a normal persons. I have strength again and my hair is no longer brittle or falling out, cuts and scrapes heal in a normal time frame.
I agree with Vic, the best day of my life was being diagnosed with celiacs, it honestly gave me back my life. No more laying on the sofa watching folks run off to do fun stuff, now I can join in!
Gluten Dude, thank you so much for all of your hard work running this blog. I know at times its a horrible and thankless task that you slave and sweat over. The hate you were subjected to was beyond the pale terrible, and know that those who felt it was ok to spew hate for something that has no impact on their lives at all, are unhappy people without a fantastic family.
Your blog has been a font of helpful info like none other. Thanks to you I knew to give the gluten removed beer a pass, and to pay attention to the ingredients in packaged gluten free food, and to how its manufactured. And you have given me the courage to ask pointed questions in restaurants and to push back on people who give me a hard time about how carefully I have to eat. You’re articles gave me the strength to tell a very pushy friend that, “No, I can’t cheat, ever. It doesn’t work that way”. Without you recounting several stories of people being prodded to cheat, and how to talk to them, in a pleasant but firm manner, made me brave enough to stand up against them.
I started reading and just kept smiling. I entirely agree. Feel like I could have written so much of this. Mine came from my mother about 5 years ago, when I was so sick that I couldn’t work properly and called her in tears every day from the pain. As with Vic’s wife, she researched, found out about celiac, and one day told me she thought I matched the symptoms and would I be willing to try this avenue. I was a bit hesitant, but she told me that we could do this, learn to cook this new way, and it would be a new world to explore. I agreed, and the rest is history. Such a blessing that was and that she is to me even now supporting my GF needs.
Since that point, even though it’s been unbelievably hard, I’m thankful not to feel that kind of pain. I’m thankful to be healthy, have the energy to be active physically and so much stronger mentally – and back on track professionally. The few times I’ve gotten accidentally glutened (the learning curve is steep but harsh in the beginning!) made clear to me that it really was one of the best things that happened to me – now I know how to be healthier. I am extremely strict and have zero risk tolerance for possible gluten and my laundry list of food allergens, so socially it makes it more of a challenge, but that is something that I accept. I’ve never, ever felt the temptation to ‘cheat’ – it’s a way of life for my health for me, and one that I will fight to protect.
First, thank you Gluten Dude for putting your blog out there to support so many people. Second, thank you to my wonderful husband, not sure I deserve all that praise, but it was worth it to get you healthy again.
For all the spouses/partners/family/friends of celiacs out there, they need our help. But the good part is that it’s not that hard. When Vic was first diagnosed, I went out and bought all the weird flours and additives so that I could make all the fancy recipes you see online, but over time I’ve learned how to adapt regular recipes and all you really need is a good gluten free flour blend. I’m still on a quest for the ultimate gluten free pizza crust, but the experiments are fun.
So great to hear from you Mrs. Vic. I think you, Vic, Mrs. Dude and myself would get along just fine 🙂
I agree. You totally don’t need all those weird ingredients. Let us know if you ever find that ultimate pizza crust.
Well, maybe not the best day of my whole life (birth of child, things like that sort of trump a celiac diagnosis), but definitely a happy one. I’m 9 yrs GF now. I’d gone from 143 to 109 lbs, everything hurt.Had a celiac panel run, lab listed it as “weak positive, not clinically significant”. A GI “specialist” told me that meant negative, and anyway I was too old & not sick enough to have celiac disease, tho after 8 years of feeling like *&&^%, I’d begun to suspect. I was in my late 50’s and failing fast. Got tested for everything. Changed GI docs. “Of course, you could have celiac disease,” he said calmly. I swear, I went home and did a Celiac Dance of Joy! With help from another celiac, I went strictly GF and less than 2 weeks later I was a whole new person. I refused to go back on gluten for an intestinal biopsy but a few months later, I had a positive biopsy for dermatitis herpetiformis (DH) which nailed it. BTW, I’d had 6 different and totally wrong diagnoses for that skin rash over the years, too. And I don’t cheat. Ever. No way.
The continued lack of education on our medical community saddens me. We’ll get there. Right? Right??
I love his attitude. The day I was diagnosed I felt such immense relief to finally know what was wrong with me. All of the doctors I had been to missed it and generally left me with a feeling that I just needed to take an antidepressant and reduce my stress. A year after my brother was diagnosed with Celiac I went directly to a GI doctor and luckily by pure accident got one that seemed knowledgeable about Celiac. He did an endoscopy without any blood work due to my symptoms and family history and said he was almost positive it was Celiac because he saw visible blunting of the villi. The week before my endoscopy I became an avid reader of your blog. It really helped me embrace my new life. Almost six months later I feel so much better. I’m free of GI discomfort and migraines. My energy has returned and I’m able to enjoy life so much more.
Great essay. I’d been flailing around for years trying dietary thing after dietary thing, convinced I was eating something toxic for me but at a loss as to what. I thought I’d already ‘ruled out’ gluten through a disastrous yearlong experiment with paleo. Then after a horrible Mr. Hyde attack around the holidays, my mother suggested making some GF lasagna based on a recipe she’d loved from a friend. I always credit her with ‘figuring out’ the GF key, even though she says all she wanted to do was make that one recipe. While shopping for the ingredients we loaded up on other GF stuff, because I was all about this idea now that Mom was on board too (or so I thought, and she didn’t correct me).
A week later and I was suddenly fine. Symptom-free, and that includes symptoms I didn’t even realize I’d had. I didn’t miss any foods at all now that I knew there were so many things I *could* eat in safety. That changed a bit after my first major unidentified glutening, but not enough to scare me out of the awesome that is *knowing what the problem is.* Nothing like it.
So good to read on a day I’m having trouble with it all, especially the social aspects. I could relate to Vic wanting a second opinion. Just a few months ago, I pulled out all my test results and paperwork as I was thinking, maybe they got it wrong. Maybe I’m not really a Celiac. Ha! My advice to you all, keep that paperwork.
I was diagnosed 8 years ago via a biopsy taken just in case by my GI. He told me the results while I sitting in front of him munching on Goldfish. Yes, you read that right, I was told I had Celiac while I was eating Goldfish to keep my nausea down. I hadn’t thought about that in years, but in an instant I’ve gone from feeling sorry for myself to laughing. He ran a gene test just to make certain explaining to me there were other kinds of sprue. You guessed it, I’m homozygous for those pesky genes that set us all up for this (mis)adventure.
Two weeks after putting down the goldfish and subsisting on steak, mushrooms, and avocados, I was on my way to good health and aging in reserve. Seriously, I look younger now at 44 than I did at 36 when I was falling apart. And yes, aspects of it all get me down sometimes. I’m only human. Who wouldn’t want to not have an auto-immune disease? I do feel my social life is severely hampered and that is something I want to figure out and find a solution for. But, on the whole, like Vic, my life is vastly improved in so many areas.
Smiling at the vision of you eating goldfish DURING your diagnosis.
Speaking of being DX’ed under ironic circumstances, I got the news about my DX on what I later found out was International Celiac Awareness Day.
So yeah, it made me very aware.
I was just officially diagnosed yesterday after 5 months of tests and gluten challenges. This post gives me a lot of hope for my future. Just coming off a gluten challenge that ended only 2 days ago I still feel really sick. So today I will not proclaim yesterday as the best day of my life because right now I just want a nap and to never eat again. However, I do know by reading all of your stories that I will one day consider it the best day of my life after I have had some time to heal. I am 34 and have always had headaches, joint pain, general tiredness, etc. Several months ago I went through a very stressful time and became very sick and lost about 30 lbs within a very short period of time. I thought it was just stress, then I thought IBS, but I never got better. I am not one to go to the doctor but my co-worker became very concerned and urged me to finally see a doctor. I thank her for it everyday. They tested me for everything and finally found the issue. Thank you all for sharing your stories. I have found more information from blog posts and a fantastic book called “Gluten is my Bitch” about how to deal and that I am not crazy than from my doctors.
Welcome to your new journey and welcome to the community. Any questions, feel free to ping me.