OK…we’ve covered lots of great topics this month.
We’ve discussed Domino’s, PF Changs and Chevys.
We’ve talked Kardashians and the NFCA.
Mrs. Dude, my Dudette and even a friend of Dude have piped in.
Good gracious…we’ve even done a Celiac Haiku.
So what topic haven’t we covered yet?
I’ll give you a hint. Oh, hell, no I won’t.
I’ve always said this blog is not about me; it’s about US. But besides that small blurb to the right beside my mugshot, I’ve never really told my story before.
So for the three of you who might care, this post is for you.
A quick setup: I was honored to be the Feature of the Month on the blog I am J the Blog. J is a phenomenal, passionate gluten-free blogger who is an awesome voice in our community. If you haven’t been to her site, you should seriously check it out.
She did a full interview with me for the Feature, which can be found here. Below is the somewhat abridged version.
Self-promotion is so ugly, isn’t it?
Gluten Dude Interview with I am J the Blog
Tell me about your experiences before being diagnosed with Celiac Disease. How did you deal with your symptoms?
First of all, thanks for the kind words above. I appreciate the sentiments and the opportunity to be your Feature of the Month. I’m touched and honored.
When it comes to symptoms, I was one of the lucky ones. My symptoms were not as bad as many in the celiac community. I did not grow up feeling “sick” like so many others did. I had my issues which I have talked about in my blog. But for the most part, I was pretty normal (though my parents may seriously beg to differ!)
My main symptoms started about six years ago and consisted mostly of constant stomach pains. Every night, I’d lie in bed complaining that my stomach hurt. And every night, Mrs. Dude would implore me to go to the doctor. And every night, I’d say “Oh…I’m fine”. But after about a year of this, and losing 15 pounds on an already pretty slim frame, I decided to go to a recommended GI in Princeton, NJ.
Being the organized soul that I am, I kept a food journal for a week before my appointment. What did it consist of? A bagel here and there; a few bowls of pasta; a few beers. I thought I was being pretty healthy. The doctor took one look at my journal and my symptoms and asked me if I had ever heard of Celiac disease. I had not. He said that I need to get tested ASAP.
The blood work came back first and he said they were the highest numbers he’d ever seen (I wish they said that about my SAT scores!!). He told me this as I was on the table about to get my endoscopy. So before I was put under, I pretty much knew. When I awoke, he said the villi in my intestine were pretty much gone and I indeed had Celiac disease…quite badly.
And so my journey began…
How did you feel once you were diagnosed with Celiac Disease? Tell me about your experiences of implementing a gluten free lifestyle.
How did I feel? Angry, mad, pissed, upset. Pick a strong adjective and that was me. Six months earlier, I got a diagnosis of bladder cancer and now I had to deal with THIS?
All I could think about was the food that I could no longer have. My focus was not on my health, but on what I would miss out on. Not the best attitude I admit, but at the time, that’s what I felt (and still do once in a while by the way).
I still remember going to Wegmans (our grocery store) for the first time after my diagnosis and just going up and down every aisle saying “I can’t have that. I can’t have that. I can’t have that.” It was so bizarre to me that all of the sudden there were so many foods that I could never eat again.
From there, Mrs. Dude and I immersed ourselves in all things celiac. We knew we had to be our own biggest advocates so we read and we read and we read some more. We brought all new kitchen cookware and utensils just for me. We made one shelf in the fridge and one in the freezer just for me. We made the pantry just for me. We made one of our kitchen counters off limits to everyone but me. I was my own island.
There is no way in h*ll I could have made the transition without the amazing support of Mrs. Dude. She was, and continues to be, incredible in her support and in trying her best to make me feel “normal”.
It was a tough transition though, accentuated by the fact that I was 100% gluten-free (never cheated, never will) but I was not feeling better. Going gluten free became easier but it took two years before I could feel myself begin to heal. And coincidentally, that was about the same time I stopped buying the gluten-free processed crap and focused on more natural foods.
It’s a real mindset to give up some of those foods. You buy Amy’s Pizza so you can still have pizza. You buy Pamela’s chocolate chip cookies so you can still have cookies. And I’m not knocking these companies. I’m thankful for them. But it wasn’t allowing me to heal. It’s now very rare where I’ll have something processed.
Do I miss it? Yep. But do I mourn my old lifestyle? I do not.
Do you have any tips for those new to the gluten free lifestyle, Celiac Disease?
I get this question a lot on my blog. And my answer is almost always the same: Patience. Lots and lots of patience. You will not adapt to your new life right away. Give yourself time to get mad, to mourn the loss of what was.
But during this time, DO NOT CHEAT. Not even once. You are done having gluten. Forever. The sooner you can accept it, the better.
You don’t have to love the idea. I don’t know one celiac who does. But you do need to accept it and embrace it because you have no choice.
What seems almost impossible when you are first diagnosed becomes difficult; moves up to bearable and eventually it becomes manageable. It never quite becomes easy but it does become something you can manage on a day to day basis.
And one big tip to celiac newbies: If in doubt, do without. It’s my new mantra. Don’t take chances if you’re not sure about something. That one minute of eating pleasure isn’t worth the days/weeks/months of pain you will endure afterwards.
Oh…and one last piece of advice. Don’t expect to feel better right away after going gluten free. Some celiacs do. Some don’t. I certainly didn’t. But be diligent, eat healthy, exercise regularly and eventually your body will begin to heal.
I love one of your earlier posts called “The bright side of having celiac disease (according to the Gluten Dude’s children)” because it’s very positive and I love #6 You’re not alone. How has Celiac Disease affected your family life?
Now that’s a good question. My kids actually gave up gluten just for me.
Oh, wait a minute…no they didn’t 😉
I actually once ordered a gluten-free pizza from a local Italian restaurant while one of my girls got regular pizza. She asked if she could have a bite of mine. After taking a small bite, she simply asked “Does all of your food taste like this?” Gotta love it.
Look…I’m blessed with an awesome family. Mrs. Dude is the best support system a guy can ask for and my kids are acutely aware of my disease, are very concerned about my health, are supportive of me and are as careful with their food as two teen girls can be.
As much as I wish it wasn’t, celiac is our life. We can’t separate the two because it’s part of every meal we eat and every place we go.
And the fact that I don’t feel well much of the time has an effect on them to. As Mrs. Dude frequently says, “When you get sick, it affects ALL of us.”
So it’s real important not to get pigeon-holed into thinking the disease is just about you. It’s not.
Let’s talk about your honesty and outspokenness. Where does this awesome passion come from?
I’m pretty passionate about a lot of things; annoyingly so at times I’m sure. Perhaps it comes from being deathly shy as a kid and making up for all the things I wanted to say back then but never did.
I’m very passionate about our disease and the misconceptions of it in a lot of the public eye. And the only way to get my message across is to be strong about it. Not obnoxious, but strong. Yes…it’s a fine line I walk and sometimes cross over, but I know I’m reaching people and that’s all that matters to me.
How irritating are the following: celebrities, media, and folks (family, friends, other people) who don’t do their research about Celiac Disease, Gluten Intolerance, Sensitivity? I personally believe that some people are not proactive in researching anything and talk out of their butts. It’s irritating to me because I believe in educating yourself. How crucial is it to advocate and educate others about CD, GF lifestyle?
Well…I wouldn’t lump all of those people together in one category so I’ll see if I can break it down for you.
Celebrities fall into one of a few categories.
You’ve got the Zooey Deschanels, who have some type of gluten-sensitivity but are pretty classy and quiet about it. Annoyance scale: 0 out of 10.
You’ve got the Gwyneth Paltrows, who don’t have celiac disease but still believe you can be ultra-healthy by going gluten-free; and are very public about it. Annoyance scale: 4 out of 10.
You’ve got the Kim Kardashians, who are clueless and think it’s a weight-loss tool. Annoyance scale: 8 out of 10.
And you’ve got the Dean McDermotts, who actually have celiac disease and could be a great advocate for us, yet still eat gluten and are public about it. Annoyance scale: 10 out of 10. (But in all fairness, isn’t everybody on a reality show annoying??)
Don’t get me started on the media. They are always looking for a story and with all of the media outlets these days, there is high competition. So I expect nothing different from them then what they’ve always done: scrape the bottom of the barrel for a buck.
As far as friends are concerned, it would be nice if all of my friends were as knowledgeable about celiac disease as I was. But I certainly do not expect it. Why should I? They don’t have the disease…I do. Some of my friends get quite stressed having me over for dinner…understandably so. Not only do they need to worry about the food, but the cross-contamination as well. My message to them is this: I’m ok bringing my own food. Honestly. It’s not worth you stressing about. I’m there for the company. And the vodka.
At the end of the day, all I ask is that people be respectful of my disease. I’ve been lucky. The people in my life have been extraordinary to me. I hear much differently from a lot of other celiacs. It’s a real shame.
And as for family? They better be there for you 100%. It infuriates me when I hear otherwise.
Tell me about your blog. What is your goal with it? What new things will come to the Gluten Dude blog in the future?
I started my blog in October of 2011. Previous to my launch, I followed a lot of other gluten-free bloggers and I just felt there was a space that needed to be filled.
There were, and still are, many wonderful, talented bloggers in the celiac community. But many of them focus on the gluten-free diet aspect of the disease via recipes, etc. And like I said, these blogs are important.
But I wanted to be a voice that said “Hey, you know what…celiac really sucks…here’s all the crap we have to deal with…let’s share our stories…and make the journey together.”
And through this process, I sincerely hope to help people and be a strong advocate for those with celiac disease.
They say your blog isn’t a great blog unless you’re pissing off at least one person. I’m not sure I wholeheartedly agree with that, but I think people have an appreciation for honest, passionate writing and the response I’ve gotten in the past six months has been wonderful.
And kudos to the gluten-free community for opening their arms to me. Well, except the folks at celiac.com, but that’s a whole other story.
As for the future…who knows? I’ve always said I wanted to make a difference in people’s lives in some capacity; that I believe I’m here for a reason that goes beyond working and raising a family.
Perhaps my disease and my blog is part of this calling. We’ll see.
Dude note: If you’ve gotten this far, I owe you one. Next drink is on me.
51 thoughts on “Hey Dude…What's Your Story?”
Thank you for your kind words! They mean so much to me! Thank you for being this month’s feature! You are an amazing voice for this community! You do so many wonderful things! I love it when you put folks who need it on the hot seat! You rock! You’re family rocks too!
Thank you again!!!
Thanks J. Will be sure to pass the word along to the family.
This is why you were my inspiration for starting my own blog! I always have something to say about being Celiac or gluten-free, and I certainly can’t cook for crap. But I do have loving family and supportive friends that are there for me! Although I’d like to go one day without thinking about my disease and what it’s done to me, it’s just our new realities, something we’ve got to live with. And hopefully with blogs, we can celebrate the victories with others.
Well said Erica. Glad you are a part of the community.
I suffered from various symptoms for years but not GI (except for some acid reflux and weight loss). I would have never guessed in a million years that gluten would be the culprit for all my seemingly unrelated symptoms: restless leg syndrome, fatigue, acne, seasonal “allergies,” chronic yeast infections, chronic nose bleeds, brain fog, anxiety, bruising…When I found out I had Celiac Disease, I was absolutely devistated. I felt like the end of the world had come. I’ve been a baker most of my life and this felt like an ultimate punishment. I had spells of anger, crying, anxiety, grieving…
It took me nearly 1 1/2 years before my antibodies finally started to go down and I felt some relief. I kept hearing from all these people how I would feel soooo much better in a couple of weeks. When I didn’t, I began to question if something else wasn’t wrong with me. I eliminated dairy for awhile, but that just seemed to make me feel worse. I had some useless doctors who were of little help and were giving me bad advice.
During that time, I started going to the University of Chicago Celiac Center. They were puzzled that my antibodies were not dropping after being very strict on the GF diet. But I also don’t get sick if I eat gluten so I have a much harder time knowing if I accidentally ingested it.
Anyway, I finally started healing 1 1/2 years after being diagnosed with Celiac and being gluten-free. I totally agree: you have to be very persistent and patient. You have to learn to live in a totally new lifestyle. And that can be very challenging, especially if you used to just eat anything you felt like when you were hungry.
To this day, I still get angry, frustrated and upset at times because I can’t eat like “normal” people do. But I also realize that these feelings are normal and that I’ve become a much more strong and disciplined person overall.
I like Bombay Sapphire cold, up with 2 olives :>)
and a personal P.S.
GD, wow, I am very sorry to hear something went amiss for you on celiac.com. : but it is a very good informative site for celiac newbies. It is a largely supportive community of other celiacs who have a lot of experience and wisdom to offer.
I makes me feel bad to think you did not have a good experience on there.
Nothing major with celiac.com I assure you. I think it’s a bit over-moderated by the owners and I’ve had one unpleasant back and forth with them so I don’t visit anymore.
It’s a shame cause that was my go-to site upon my diagnosis.
And Bombay Sapphire? Very nice. I’m a Hendricks man myself.
Thank you for your blog and posts!
It’s amazing, although my family and I, live approximately 5000 miles away (Beirut Lebanon) from your family, lot of what you say applies to us too.
That is the beauty of the celiac community. I got to discover it, after my son (8 years) got diagnosed less than a year ago.
When we started our gluten free journey, I researched a lot about the topic on the net. And like you said, there are so many recipes. Which is great. But I wanted to read about the psychology, how to be strong, how to empower your child…
So thank you 🙂
Your fan in Beirut.
Wow…Beirut. The power of the internet. Very cool.
Sorry to hear about your son 🙁
Great post, dude! It’s nice to hear your story 😀
Thanks Traveller. All of our stories are unique, aren’t they?
Great post! One amazing thing about celiac disease is the community of shared interests that it creates. Wonderful to have your point of view and advocacy. Hope to meet up some day in real life!
Let’s pick a town in central North America and all meet up for one big party.
The celiac community is strong and far-reaching. I have “met” people from all over the world and our experiences are quite similar.
It always helps to have someone who “gets it” to talk to.
Irish…nobody understands celiac as much as a celiac.
Dat’s what I always say, bro. LOL
This is one of those things that require “walking in one’s shoes” to truly understand it.
But it is beyond helpful if we have family and friends who at least try.
My hubs is my rock and my heartbeat.
Without him, I do not know if I could have survived the last 5 years.
He went GF voluntarily with me to make things easier; he does not miss gluten and believe me, he eats very, very well. We both do.
You and I are lucky to have spouses who love us unconditionally.
I have met many celiacs whose partners walked when it got bad before DX. They just could not take the sickness part of “in sickness and in health”
I met one woman with stomach cancer (and she had it removed)as a result of her long unDXed CD and she is not angry or living in depression. She is GRATEFUL to be alive and has her family to love and support her.
It’s perspective. How do we live with CD? We just do it!
You have raised many topics this past month, GD and they are all good ones to help raise awareness.
CD is not the end of the world. It’s inconvenient and it can wreak havoc if it is not caught early. (that is the hard part because most of us were left unDXed for so long)
But, it is manageable. And for the first time in my life, I see that soon, I will know what “feeling good” truly feels like. I am getting there and I look forward to that day! My progress is slow, but it is progress nonetheless. :>) Am I happy to have Celiac? of course not! But I AM happy to know WHAT was slowly killing me and if giving up gluten is the answer, it is not a hardship. Being in horrific bone/muscle pain with neurological impairment and living in the bathroom is a hardship.
THIS recovery right now?– this is a cake walk compared to that hell.
People do not understand the “ripple effect” or the many ramifications of CD. But the more we inform, the better our chances of having this disease understood.
As this month comes to a close, I salute you for writing something special every day!! Well done, G-dude! and Thank you for spotlighting my story. I wear my “trendiest person” label with ironic pride. 🙂 Cheers, kiddo.
You are quite welcome Irish. Your story resonated with a lot of people.
I am enjoying your blog; thanks for taking the time write it. I also liked the posts from the others in your life and their viewpoints. I’m reading the archives as I can.
Do you ever use home gluten test kits? They’ve been a huge help to us.
I think the GlutenFreeWatchDog service would be worth a post; because it is a great way to get info on products tested to 5ppm. DH seems to do well at this level.
Also, do you ever read over at Glutenzap.com? Glutenzap’s core posters are way above average sensitivity-wise. Celiac.com also has a supersensitive section, It is fairly new and a bit rough sometimes as people are trying to sort out a vocabulary to discuss these things.
GF is trendy, and so is the Paleo diet. I think the Paleo/Primal diet can help celiacs heal faster by eliminating the processed food from the get-go. As frustrating as the blowback from the trendiness is, I can’t help but think that the benefits will outweigh the costs, particularly if the gluten sensitives get themselves sorted out – that’s 6% of the population.
Thanks for sharing your story. I got misty eyed because you expressed so well the emotions that go with this condition, and you made me LOL too.
I’m a wife of a celiac. My husband NEVER complains about what he can’t eat, because gluten has caused him so much misery. Mrs Dude is even more careful than I’ve been. She sounds awesome and is an inspiration.
It’s encouraging to hear the timeframe of healing and also the difference it makes to avoid processed GF foods. We’ve recently come to the same conclusion and I’m making almost 100% Paleo-type meals.
I recently discovered your tweets and blog and really appreciate your engaging and relatable style. I think you’re doing a good thing.
Thanks so much Eileen. Real nice of you to say.
I just have to say how much I enjoy your blog. If you were a preacher, you’d be hearing me holler an “AMEN” after every few sentences. Thanks for taking on these celebrities and the misinformation out there.
Amen to you comment Michelle…thanks.
I am hopeful someone here can help me. I was diagnosed with Celiac yesterday but my main problem is my stomach is distended and I stopped going #2 or at least my system is almost shut down. I need to get what is in me – out. Now. This feeling has been ongoing for weeks. Going #2 very little. What should I eat or drink that will be inline with a Celiac and will ALSO help me get rid of what I have in me so my stomach will go down and I can feel semi normal again? Thank you!
Sorry to hear about your diagnosis John. And the fact that you’re so “backed up”. Have you tried a good old fashioned laxitive?
iuI tried that. My feeling is I am not constipated at all now. I believe the stomach distention and bloating makes me feel constipated but there is nothing left in me. All watery on #2. I have stuff to work on what I belive to be a leaky gut and have begun cleaning out all the goos tuff that I ate for more than 40 years. I have made homemade chicken soup, removed the onions, celery and parsley and purreed the carrots and returned them to the chick, chicken broth for eating. I made unflavored gelatin with Wlch’s Grape Juice for jello and purreed more carrots for side dishes. I was told that Celiac doesnt heal by itself with Gluten free alone unless I fix the leaky gut too. I found this blog to be very helpful but I need to know how long will it be before the bloating and distention goes down assuming I stay on the diet above and take probiotics? Thank you for your input. I look forward to your answer.
It’s a medical question that unfortunately I don’t have an answer for. I simply not qualified and since I didn’t have the same symptoms, I can’t speak from experience. Find yourself a really good GI, if there is one in your area. Good luck to you.
Hi, I am new to this blog. I am not all that new to celiacs, though my exact diagnosis only was confirmed recently.
I have been very ill since December (I guess I can really pinpoint 2 years ago February when I came down with MRSA for the first time..yes, first….it came back last July….if the infection didn’t kill me, I was sure the meds would). In December, I became alarmed when I was experiencing SEVERE fatigue, memory loss, poor word recall, my usual stomach problems, distention, horrendous cramps, food going through me like water, nausea and vomiting. When I would eat I would within minutes becomes congested to the point where my nasal passages would fill up and I could barely breathe. Severe mood swings, night seats, swollen lymph nodes. I would be up 5 times a night. The pains in my joints were so bad, I couldn’t walk down the stairs in the morning, I had to slide down the wall. Then the dizziness started.
I went to my doctor, who suggested I may be diabetic, or just depressed.
He took blood tests and called me with the “good news” that I was fine.
NO I WASN”T
I went to a holistic doctor for hormone testing. She suggested the problem was in my gut and I was probably having some food allergies. She suggested I try to get off gluten and dairy and see if that made a difference.
Never get of gluten without a celiac screen first. I learned that the hard way.
But I felt better…better than I had in I don’t know how long. The swelling in my face had gone down, my color looked better. I could sleep on both sides of my body at night. I was up only 1-2 times a night. I learned a lot. I read about gluten and realized…as I read, I think this doctor thinks I have celiacs…I hit 99% of the symptoms, down to the psoriasis and the unexplained recurrent miscarraiges. My whole life I had stomach problems, couldn’t gain weight, until of course college…they told me I was lactose intolerant. Sometimes I was, sometimes I wasn’t.
Back to feeling better….all of a sudden I wasn’t. I blamed it on being cross contaminated everywhere I went. It was bad, and it made no sense.
The homeopath ran an IgG 154 food allergen test. I came up with histamine reactions to 30-40 foods. I didn’t believe it, until I tested it out and realized what was happening to my body when I ate those foods. They ranged from congestion, to reflux, heartburn, nausea, vomiting, pain, distention, diarrhea, searing headache, swelling hands, lips, rashes, itching in the throat.
They put me on a rotation diet so I didn’t become allergic to anything else. My body started rejecting almost every food that was supposedly “safe”.
I went back to my Primary Care. He took more blood tests…I begged hime to send me to Boston. I could not longer take care of my children, drive, walk unassisted for longer than the distance to my bathroom. I was losing about a lb. a day. At that point in a month I had lost 25 lbs.
He said the blood tests would tell us where to look. My blood pressure was high, and that never happens to me.
He ran a celiac screen, though I had been clean for 3 months, we knew it would be negative.
My ANA came back 640 ( at typical high is 80)…he sent me to a Rheumatologist. Who told me that she was not 100% convinced I had Lupus and she would see me in 6 months, also, it would have nothing to do with my stomach problems.
I called my primary (jerk) crying….please do something, I think I’m dying, my body is shutting down. I had a low grade fever, the pain in my legs was at times unbearable. You haven’t scanned me…please do something. He sent me to a GI. Who took one look at me and and said, holy crap, you are an autoimmune mess! A few days later I wound up in the ER, my father thought I was dying. I was grey, my eyes sunken, hallucinating and babbling, my family had to fight for them to give me fluids. The ER dr. told me, he didn’t know why I was there, or what I wanted him to do for me! How about fix me! They tested me for more tick born illnesses. A few days later the gi did a colonoscopy, endoscopy, upper gi, lower bowel, and found nothing. I kept asking about my gallbladder or my pancreas (it was his biopsy that came back weeks later confirming celiacs)he was concerned that my celiac screen was a high negative for being clean for 3 months. He then suggested I go to Beth Israel in Boston. Amen! That’s where I wanted to be. They have an excellent GI program and a Celiac Program. Then….
My primary denied the referral. He wanted me to come back and see him, not go to my appointment in Beth Israel first thing in the morning. I was devastated.
I went to Boston anyways, I switched PCP’s to one at the BI and never looked back.
The minute I got there, they treated me like a human being. They didn’t treat me like a mental patient. Not to mention my friends thought it was all in my head and I was depressed and stressed.
Within a week, I had seen a new GI, PCP, Allergist, Neurologist, Rhuematologist, and a hematologist (bc my ANA was still high and so was my IgM, and even though they cleared me of Lupus, my new pcp was concerned) They found a neuroendocrine tumor on my pancreas.
So in a week, I finally got the celiac diagnosis I needed to confirm what I knew, and now I had the “Steve Jobs” tumor.
Still have not driven since April, need a wheel chair for a distance greater than my bathroom. I couldn’t leave my couch. Half the doctors think that my wide array of symptoms came from the tumor, and the celiacs, the other half think there is something else.
I abandoned the rotation diet and ate what I could handle. Rice cakes, beef, lamb, pork, salt, pepper, rice, steamed carrots, homemade jello (allergic to citric acid in jello cups).
My weight started to level off at 35 lbs in 3 months.
I went to the beach cottage with my family the week before my surgery. I got a bit stronger, the air and change of scenery was good for me.
I had the surgery last Wednesday. I am waiting for the pathology report, but they believe it is benign.
But what the HELL happened to me? Did Celiacs make me that sick? That, with the tumor?
I am just trying to make sense of what has happened to me. I don’t know if I’ll get my “other” foods back, with all of this, Celiacs is most welcome if I can get the rest of it back. I remember in the beginning being so overwhelmed with gluten free. Now, I would do anything to get potatoes(which most gf products contain), yeast, dairy, chicken, eggs, fish, shellfish, citrus, most fruits, lettuce, onions, parsley, most herbs and spices….
I guess my question is, has anyone else gotten so debilitatingly ill with Celiacs Disease?
It’s so hard. I am very frustrated, and yes, now I am depressed. I have missed Spring and now most of the Summer. I can’t eat anything, I am sick of eating the same things. I have been able to make a muffin recipe that hasn’t bothered me, thank god…
But if you knew me, you would know, food is my life, I love food, I love to cook. I can cook gluten free. I would love to create wonderful things and am up to the challenge, but not when I am so limited to what I can or can’t eat along with that.
I am sorry for the rant. I have been in the dumps for 2 days now. My brain is feeling better, so I think it is all catching up to me, though my body is still recovering from the surgery, I am still stuck on the couch.
Hi Joy. So sorry to hear all you’re going through. I did a post a few months ago where celiacs talked about their related diseases/symptoms. It was a real eye-opener. Maybe it can help you a bit.
Here’s the link: http://glutendude.com/celiac/celiac-link-to-other-diseases/
I’m glad you were able to get the help you needed. I swear, most doctors just suck.
Please keep me posted on your progress.
Thank you for sending me that link. I was shocked to see someone else having dealt with MRSA.
I do believe my daughters have celiacs as well, though one tested negative, and I have yet to test the other. They both have stomach problems, warts, one was failure to thrive, one has discoloration on her teeth.
I have had bizarre calluses on my palms, you would think I was a ranch hand….not a stay at home mom. Since going gf….the calluses are almost completely gone
Joy, I feel for ya. I grew up in an Italian household and loved all kinds of Italian food and wings and sandwiches etc. I was a carb junkie all my life. The feeling I have had the last week has made me change 180 degrees. All I hear is Drs not knowing WTF they are doing and running endless tests on people when its Celiac that causes this havoc. I have done nothing all weekend but throw out old food and gather info on this. I dont need tests to confirm it – I have it. Its just a matter of whether I have cancer too which I need to check. My question to you is how long did it take for your stomach to go down from being distended once you realized what you had and changed your diet?
My distensdsion would come and go as a result of the food, whether it was gluten or other allergens. The swelling in general has gone down immensely, but the swelling in my ankles and joint pain was the last to go. I started gluten free in the beginning of February. I went back for a week in April for a gluten challenge.
It is amazing what havoc even a small tumor will create in your body.
I hope you don’t have to go through that as well.
I am still waiting to be cleared by the hematologist in oncology. It’s all very scary.
Hi John, Joy and GD-
I feel for you all…I am Celiac- Gluten sensitive, to name a few… Fibromyalgia,Interstitial Cystitis, Painful Bladder, Postural Hypotension,Arrythmeia.Bradycardia,CostoCondrointitis,GERD, Leaky GUT, IBS,Vulvadynia,Anxiety and Depression, (possible Hashimotos/Sjorgrens) . I sometimes feel my body has gone to war and I am a hostage. I turn every day into a offensive against what society is doing to our bodies. I want peace, love, acceptantance. I want my hunger and pain to stop. I know my life must change to survive. I went to Boston had my MAST cells checked was negative..my peace of mind. I now am out there trying to help others. PLEASE -Join support groups so you don’t feel alone! NFCA,GIG,Appetite for Awareness, are all awesome groups! I have much to say…losts of ways to help!
EAT ORGANIC for 6 months and give your body a heros hug!
Drink DISTILLED WATER ONLY…natural non acid juices Pears, Blueberries are best! Use only ORGANIC MILK, PURE HALF & HALF, PURE DAISY SOUR CREAM and take a GF Acidophilus tablet 3x daily. Make sure you are tested for THYROID and BONE DENSITY..I take D3 5,ooo Units daily. I take PRELIEF for the bladder issues and TUMS GF daily as well. Omeprazole for the leaky gut. Tramadol for the pain at night. Buspirone for the anxiety at night to sleep. T3T4 for my Thyroid which helps my body do its juggling act. I sometimes suffer from Migranes. I get extreme mood swings when I eat gluten accidentally and the Jekyll and Hyde comes out. Yes, also days on the couch and brain no longer functions either. Been 3 yrs…since being diagnosed put on an elimination diet cause CD test were negative; meaning my villi was intact. I have a history of pyleonephritis,cervical cancer and trauma.
=life has not been easy! My family is in denial about to leave them so I can survive. Keeping a GF home like being kosher on Passover is essential! Life does get better but I am still not there yet myself. I would like to start a GF community one day just need to find it. BTW, all my first born female cousins share this disese too ! We all hid in silence for many years! I send you all hugs hope my insight has helped I am on twitter and facebook -see me there.
LUVE and HUGS to all GFreers! WE HAVE TO DO IT FOR US ALL!
heartsabound4luv-/Ru-Toby G…Your doing a GREATJOB continue!
Keeping a calendar daily and the paleo/ cavemans diet with rotation helps. Everything in moderation and eat all your healthy cravings! Best of luck to all!-Ru
“Give your body a heros hug.” I like that!
It’s funny, in the beginning my aunt used to joke that it was not much different than going kosher. I said, no, I think it’s not as difficult. But with all of my other allergies, it is exactly like going kosher but many steps further.
I saw my allergist the other day. I basically bullied him… I told home what I wanted, when I wanted it, how he
Was going to do it. I told him I am dealing with the GF. It sucks but I can handle it. But for god sakes I’m Italian and if I don’t get garlic, onion, parsley and cheese back it’s not going to be pretty…. Not to mention the 35 other food allergies.
He’s doing blood and skin tests to see where to start and what to add in first.
I made him take another ANA bc it is insanely high.
Does anyone know any decent alternatives to cheese? Parm or any other cheese, I have a casein and whey allergy as well. Couldn’t tolerate ghee as a Butter alternitave.
I agree with Ruth’s whole foods body hug… That’s it for me. I know I go through these kicks of whole foods natural. Non processed…but I think I’m done. It may be my new full time job.
While I’m at it… Did anyone else have a sky high ANA with celiacs, but test neg to lupus?
Hi Celiac Dude:
So Im have celiac but I am also allergic to wheat so I tend to break out in little blisters or a rash etc. I can tell if I have eaten something (unknowingly) because I will get the blisters or tiny little rash in the crease of my righ arm. So even if something is cross contaminated I will break out.
Anyway, my question to you guys is, even though we are all on a gluten free diet can you still have sypmptoms of celiac? I sleep so badly and I just have those weird kind of days, where I dont feel myself and very anxious. Ive had anxiety since i was a kid but last few years since being diagnosed its become more prevelant.
Was just curious as to what you guys thought and if you ever experienced anything similiar. Thanks so much
Nicki originally from London, now in St. Louis!
Yes, it seems to me all these ilnesses related to Celiac have anxiety linked to them. My doctor told me it was nerves…my rash came and went in 7 days on my legs; ankle to knees. I think it was dermatitis herpetiformos (sp). I haven’t had it in a long while. Could be related to soap, detergents, shampoo, toothpaste, make-up…on and on!
I am no expert, but reading NFCA,GIG,Celiac.org, websites helps!
You have to be you own Sherlock Holmes with Celiac disease!
Best of luck!
Thanks Ruth for the information. I am really good at reading labels and checking things but you never know. Sometimes its overwhelming all the things we have to check for wheat/gluten!
Youre right though, you def have to be your own detective!
Hi some how came along this sirlte in search for an answer to what has made me so gravely ill the past 3 years, it seems as though celiac could be it. I’ve had colonoscopyy/ endoscopy showed gastritis @ possible infectious colitis. Am hoping u can guide me on what specific tests to ask for from here that will confirm or deny celiac. I am deatly ill, no longer functioning on my own, so many unrelated symptoms lg amount of weight loss, extreme fatigue, weakness bone pain, bone loss, major skin issue, rapd aging @ so much more, no incredibly hypersensitive to all foods, noise smells sounds. Feels like my body is spiraling out of control, like allergic to everything I come in contact w/ no dr has been able to come up w a reasonable diagnosis, oh @ I have many nodules, groths, limps under skin. Its insane how horrific I feel @ how hard I fell look @ feel 80 @ just a few years go at 50 looked 40 @ lfelt 40. There’s so much more to tell but I’m hoping maybe if this is it I can finally turn this cart around, get he right tests, get eating the right foods, etc. So as far as the right diet, is there a link to that @ also the tests to be run. I thank u so much @ wish everyone well on there journey to renewed health. I just had my 2nd endoscopy @ it showed scalloping in the duodendum – does this indicate celiac? Also, I have burnin in my mouh, on my tongue, teeth, cheeks, lips in ears @ nose @ sinus cavity @ feel extremely dehydrated, eyes as well dry @ burning. The pain when I eat now is extremeseems like even drinking water @ this time is impossible – lots of nausea,vomiting, was diarrhea but now constipation. Burning upon urination, burning in rectum (sorry about that one). Anyway, always had a lot of allerics @ stomach issues as a teen – stomach problem was thought to be a spastic colon. In a way I hope thisis it, I desperately need answers, this severity has ensued now for over 3 years, can no longer function had to go on disability, move in w/ my mother. I’ve got to look at the link w otherr stories to compare but seems of high likelhood. Could have the leaky gut going on @ also in going in for a scan looking for an endocrine tumor. Another thing my bones r becoming deformed, loook like rhuematoid arthritis @ I’m too young for that. All I know is that I am gravely ill @ feel like my body is shutting down, sounds drastic but I think u know where I’m coming,from. Thanx so much for ur input. Best to all. Gina
Hi again ……anotherquick ? Seems like food allergy testing @ other allergy testing essential. Please advise. Like I said before it seems like my body is allergic to everything no matter what, even foods I could tolerate in the past. Seems like I had another ? Just can’t remember right now, so much brain fog too! Ok, thx again guys!!! I’m hopeful this may be the right patth, certainly been down so many wrong ones @ I’m raising the white flag – the horrific all over pain is extreme @ unbearable, no way to really described what a nightma this truly is. Nite.
I was just diagnosed with Celiac Disease on Aug. 23rd, my birthday. I have been told I was anemic & had IBS for years. I had stomach pains so bad last year I was rushed to the hospital because they thought I had an aortic aneurism. This year my colon pain & back pain became unbearable. Then I lost feeling in my left leg & foot. I had to give up my teaching position on April 20th…so sad! I have had many severe issues since then & have become house-bound. The Dr tells me all my symptoms are from Celiac Disease. I am reading all I can about it & doing my best to meticulously eat gluten-free. I am excited to have hope that I may again have a life outside my bedroom. I will add your blog to my favorites. Thank you!
At least you have a life inside your bedroom 😉
Sorry to hear about all your ailments. Hopefully, going gluten-free will clear most if not all of them up for you.
If you have any direct questions, feel free to contact me directly.
It’s a celiac jungle out there.
Where the hell have you been all my life?
Kudos and thanks for all that you do.
Most likely in the bathroom 😉
Well I am a new-er follower of your awesome blog … and I just came across this … thank you for telling us your story … you are making a difference – just wanted you to know that. I know as a new blogger I am struggling with my “voice” – I have a need to reach out and connect but still finding my way as to how I want to do this. I love your blog and it honestly inspires me.
I am struggling with feeling healthy lately and struggling with the need to make more changes … but in reading blogs such as yours – that deal with the “real” more – I want to tell you – it helps. Even though I am suffering with the dreaded “brain fog” and “lack of concentration” lately that goes along with other symptoms ~ your down to earth writing and blog keeps sparking my imagination and the underlying passion I have about “educating” others on the “real and honest” information about Celiac Disease and Gluten Intolerance.
I truly appreciate the straightforward thoughts and ideas and explanations about ways to look into “healing” ourselves, and appreciate that you and your “following” ha ha ~ understand that going gluten free is only a small part of our path. Another reason I respect you all so much, and respect Jennifer Esposito for her continued efforts along this line as well.
I am very please to have come across your blog … thank you so much for all that you do …
“Finding my voice” took me awhile, as my early blog posts can attest to.
Keep doing what you’re doing. Do it for yourself and you’ll find your voice.
Wow. It is first blog (besides my own) ;P I came across that is telling the real deal with celiac. Yes.It is sucks and it is not easy. This is what I say too. 😉 Great post and interview.
Thanks. What’s the link to your blog? Would love to see it.
(I know-long name lol). I am new to gluten free world.I don’t write that often as I would like,and many of my thoughts are not posted there…. yet…… (They are stored on my desk and make bigger and bigger pale of paper every week). I am glad I came across your blog. I needed to hear other people saying the truth about Celiac,that it sucks and complicate your life. Now I know I am not alone. 😉 Ps. Sorry for any grammar errors. English is my second language. 😉 Ps.2. I know it should’t be an excuse. But ..hey.. I am celiac! Can I be excused now. 🙂
How do you cope with eating out? Beacuse it is almost impossible to eliminate cross contamination from resturant food I almost never eat out – (I had celiacs as well) but people tell me I am missing out and it is very hard in work situations sometimes. The typical mantras are to ring the resturant, ask etc but almost always somthing goes wrong – not really a reliable process I think. Perhaps the only way around it is to order a salad at the resutant but that would not 100% guarantee against cross contaimination.
I was diagnosed with CD in 2011 … plus I am lactose intolerant (since birth – its not going away) … talk about a food challenge?! But it really isn’t that complicated – the problem is others are so misinformed or uneducated about eating/cooking GF. I have to continually explain to friends and relatives that yes, I can still eat chicken and/or beef – its how you cook it that affects me … what spices, sauces are you using? How are you cooking it (fried, battered)? It still boggles my mind how many just don’t understand that eating GF isn’t that complicated. Like my Celiac doctor says … stick to the outside aisles at the grocery store – fruits, veggies, dairy, protein … stay away from the processed GF food. Even when I offer to cook my family a meal, they turn up their noses – like any dinner that is GF is gonna suck … so they won’t come over?! I finally convinced my parents to come over for dinner a few years ago … and I am pleased to tell you they were pleasantly surprised! They loved what I served as it all appeared “normal” … but it was all GF – who knew?!
But I must say … I think the worst thing (and possibly the most painful) about having CD is the social isolation which nobody talks about. A small group of my former co-workers had been meeting once a month for dinner for the past several years just to keep in touch after they moved onto other teams. When I recently discovered this, I was told they didn’t invite me because “well you know … you have food issues” – wow – tell me that didn’t hurt?! I was actually told once that, even though I couldn’t eat anything on the menu, I should still come to the staff Christmas luncheon and just order a drink. Seriously? Would you go to a restaurant, order a drink then just to sit there and watch everyone else eat – just to appear social?
Then there’s the promise of being fed GF and then it doesn’t happen … but nobody seems to care you didn’t get fed?! I paid the registration fee for an all day Saturday course that included lunch and you had to indicate dietary restrictions which I did – GF and lactose intolerant. However, when it came time for lunch, I couldn’t find anything on the buffet table. I finally found a volunteer and asked her where is the GF lunch – she told me I could eat some carrots and there was fruit cocktail on the dessert table – what?! A few years ago my travel agent advised the airline I was GF and lactose free. When it came time for lunch, the overworked flight attendant got very short with me – she said “which dietary restriction is it – gluten free or lactose free?!” I said both … she said she couldn’t do both – choose one! So I said “OK – then give me the gluten free lunch” thinking I’d get a piece of chicken or whatever. Nope – I literally got 2 celery sticks, 1 carrot stick and a block of cheese … longest flight ever! This is why I’m always packin’ … a GF protein bar, GF crackers or something to get me through in case I don’t get fed – which seems to happens alot! I’ve been invited to things where there was food served and the attitude was like just get over it, don’t be a pain in the a**, just eat it, it won’t kill you to eat it this one time … so misinformed!
So … clearly educating the world on CD and how to eat/cook GF should be a priority. But people also need to understand that having CD is not our fault and we didn’t choose these dietary restrictions just to annoy you. And, by the way, not extending social invitations to us because of our dietary restrictions may make your party menu planning go easier – but it is very hurtful to exclude your Celiac friends and relatives. So next time, please consider our feelings and make a little effort to accommodate us … and if you don’t know how, just ask us – we’ll help you! :o)