Hello…I’m back. Yes…I’m still doing my “30 Days of Helping 30 Celiacs“. I’ll continue with that series tomorrow.
I just needed a bit of a break for a couple of reasons.
First reason…I got gluten-whacked 10 days ago and it got the best of me. Long week to say the least.
This time, it hit me mentally really, really hard. How hard? In the past week, I have 1) inadvertently left my car running while I went food shopping. The crazy thing is when I parked my car, I knew there was something I should do besides put the car in park but just couldn’t think of it; 2) Used the women’s room in a public facility that I have been to numerous times. I realized it half-way thru. Luckily, no one came in; 3) Was so agitated that Mrs. Dude had to warn the Dudettes to give me space.
There was more, lots more, but you get the point. I was a mess.
Second reason…I was angry. Angry at some in this community who only seem to care about themselves and not about the celiac community as a whole. It’s that “if it doesn’t affect me…why should I care” attitude that seems to be permeating this country that drives me batty. I have a real hard time with people who lack empathy and compassion and it simply got the best of me last week. And yes, I’m sure the fact that I was glutened heightened my anger.
So I decided to unplug for a few days to heal my body and my mind.
But I did want to revisit the Jimmy Kimmel issue and why fighting the jokes matters…it definitely matters.
I’ve already spoken my peace. But I want to bring in a few other strong voices. These are three powerhouses in our community and if nothing else, it validated how I and many others in this community are feeling about the gluten-free jokes.
1) Gluten Free Girl Shauna Ahern is an incredibly strong voice in our community (and is also 100 times the writer I’ll ever be). She wrote a passionate post last week called “Celiac is No Laughing Matter”. Please read it here. It says everything that needs to be said about why the jokes must stop.
2) Jennifer Esposito was on Fox & Friends last week with fellow celiac E. Hasselbeck. Here is the video. At about 1:30 in, you see her explain why the jokes need to stop. My continued kudos to Jennifer for using her platform for the greater good.
3) Our very own Irish Heart knows I’ve been struggling and knows that I’m also beyond frustrated with the jokes. Sensing I needed a break, she sent me the following to use on the blog. Irish…as always…you rock!
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It is Celiac Awareness Month, but you may not know it because there is no mention of it on the news. It does not get the air time that other conditions and diseases get.
Why? That’s easy…there’s no money to be made off it. There are no medications that big pharma can throw at it.
If it weren’t for our own Jennifer Esposito, it would not have even merited a mention on television at all this week. I found one short article on the internet about it this morning…and it was enthusiastically entitled “More options for the gluten free!”. It showed a picture of a vegetable stand.
To all the GF diet haters and the scoffers, I have something to say.
I do not “do” a GF diet just because I want to or to lose weight or because it’s the “diet du jour.” I do it because it is the only thing that saved my life.
Maybe that also sounds “dramatic” or “annoying” to you, but my family and friends (and GI doctor) can tell you just how dire things were before diagnosis.
But it’s not just me: I could relate dozens of stories to you that illustrate how devastating this disease is.
So many wonderful people I have met the last few years have stories just like mine: LisaC, Barbara, Heidi, Heather, Ada, Neroli, Trudy, Colleen, Laura, LisaH, Jess, Karen, Arlene, Brenda, Sylvia, Camille, Sherry Lynn, Jane, Kathy….oh yes, I am putting names here because they are REAL PEOPLE and not just the scorned unnamed who are always lumped into the “annoying people who eat GF.”
We can all tell you this: over the course of 10-20 years, were were diagnosed INCORRECTLY with the following ‘syndromes’: IBS, GERD, Fibromyalgia, Chronic fatigue. Some of us also heard these words too: lupus, MS, Lyme disease, rheumatoid arthritis, spondyloarthropy, Epstein-Barr.
Doctors were stumped, so we were left to suffer. We spent thousands of dollars searching for answers to what ailed us and getting none….For years.
Then, many of us developed thyroid disease, liver, kidney and adrenal dysfunction, severe anemia, bleeding disorders, heart disease, Sjogren’s, Raynaud’s multiple food and chemical intolerances, MCAS.
We suffered multiple miscarriages, infertility (some of us were never able to have children at all), very early menopause, endometriosis, uterine, breast and skin cancer, asthma, migraines, seizures and osteoporosis.
We had/have severe neck, back and leg pain. Nerve pain, lymphodema. We lived in unrelenting, excruciating pain. Most of us had ataxia, burning skin and bones, and parasthesia.
We were given anti-depressants, anti-anxiety meds, tons of pain meds and crap drugs like Lyrica–all of which causes more side effects and no relief.
None of these drugs helped because the underlying CAUSE was not discovered and certainly, these symptoms were “not in our heads” as was often suggested.
Serious insomnia robbed us our sleep for many years. We would gain weight like mad and then, most of us dropped weight — for me, it was nearly 90 lbs. in a year — because of malabsorption.
We had hair loss, a devastating loss of cognitive skills, suffered vertigo, horrible rashes, and developed cancers of all kinds….you name it and collectively, I bet we had/have it.
This disease affects people from head to toe. Every organ, every body system can become compromised.
Many people have reported to me that they lost their jobs, some had their spouses walk because getting diagnosed took too long , and some of us almost died. Sadly, three of these women I mentioned above did lose their lives in the end (much too early) because diagnosis took too long and they had so many complications it really was not reversible, despite strict dietary compliance.
Celiac comes with a lot of collateral damage.
Once diagnosed and on a gluten free diet — the only treatment for celiac right now — most celiacs can recover in time, but not without considerable patience and time. There’s too much damage done. I have spent 3 years in painful physical therapy rehabbing my muscles. I am always in pain. It took me nearly 15 months to start seeing real symptom – resolution. But I am not complaining. I am thrilled to know what was killing me. I take no medications and I am still alive and kicking! It takes time and enormous patience and a GIGANTIC SENSE OF HUMOR to recover.
The gluten free diet — the treatment that saved our lives — is not a joke. It’s our medicine.
Still think we’re being “too sensitive” about this issue? Then, frankly you’re either thick as a brick or you’re totally lacking in compassion.
We (and I mean celiacs, those with gluten sensitivity, various AI conditions) get so tired of defending the gluten free life we lead. Why should we have to? Because people who scoff it, ridicule it and dismiss it actually DO make it harder for those of us who HAVE to be on the GF diet. We are put in danger every time it is made the butt of a joke.
Not sure why this is so hard for people to understand.
The gluten free diet is not elective for those of us with a medical necessity. It’s life-saving. Without it, I would not be here writing this message and if going GF is perceived by some as annoying or trendy, then I proudly remain “the most annoying and trendiest person alive.”
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Thanks tons Irish. And THIS is the message that we are trying to get out there. That our condition is not worthy of the jokes and the scorn. And the more people joke about the fad, the more our community will continue to suffer. It really IS that simple.
Please…everybody…let’s put the community FIRST and ourselves second. In the end, we’ll all benefit.
I’m going through it right now as you know Dude. What can I say but thank you and Irish Heart for keep pushing forward. This is so truthful and painful to read. I am one of the many that most likely (95% sure) will not be able to have children because of this disease and I don’t find that funny at all. I get emails and letters every day from so many suffering yet the jokes and the nonsense continues. I write each person back and try and offer some sense of peace but I don’t know what I believe anymore. It’s posts like these that give me hope again that maybe we can change things and for that I thank you from the bottom of my heart.
Jennifer Esposito
Hope is a good thing. Sometimes…it seems it’s the only thing. Hang in there.
I have a amazing story with Celiac disease from childhood until today. Would appreciate help for our Foundation a 501 (c( 3 charity
I would like to thank everyone here for trying to raise awareness about the seriousness of our condition. I was diagnosed about five years ago, but had an extremely difficult time staying faithful to my gluten free diet. I thought, one night of indulgence won’t kill me. I had a “cheat” day once a month, which would turn into once a week, which would just lead to me completely falling off the wagon. My grandfather was also diagnosed with celiac over twenty years ago, and even though I watched how debilitating it was, and how he wasted away from a strong, vibrant man into a ghost, it took him passing away two years ago this August for me to finally get it.
My grandfather developed Parkinson’s in addition to colon cancer (both apparently being hazards of having celiac), but it was the celiac that became his undoing in the end. The Parkinson’s was making it more difficult for him to swallow food; he was choking when he tried to swallow. He had had about twenty ministrokes and was in the hospital more times than I can remember over the past twenty years, so when my parents told me he was in the hospital to have a feeding tube implanted, I had no great concerns. But, he had celiac. We visited him in the hospital after the surgery and all was well. My grandfather was talkative and hopeful. The next morning, however, was another matter entirely. That morning, the hospital staff had attempted to utilize the feeding tube, and it did not work. Normally, a feeding tube directs nutrients into the stomach where it is then pushed through the digestive tract. But, he had celiac. Lacking the swallowing motions and force of gravity of normal digestion, his damaged intestines did not have the physical capacity to move the food through his body. When I walked into his hospital room, he looked angry and defeated. “I threw up,” he said, and he stared at the ceiling. Those were the last words he said to any of us. The doctors stopped giving him fluids, and all that was left was to let his body starve to death. I don’t want to die that way. No one should die that way. But I am still so afraid that that will be my fate, because unfortunately, I, too, have celiac.
This condition is NOT funny. This condition is NOT a joke. And I am ashamed of myself that it took my grandfather dying for me to come to terms with that. Because, if it’s not a joke, it gets very scary, very fast.
Unfortunately, I am one of those people who is both lucky and unlucky when it comes to celiac, and I’m sure that the reason most people remain undiagnosed or unconvinced that they need to be on a gluten free diet results from cases like mine. My digestive symptoms passed by mostly unnoticed. Our last name means Iron in Hungarian, and it must be from an iron stomach. My grandfather didn’t show any digestive symptoms until he was into his late sixties. My body found other ways to cope with me poisoning myself on a regular basis, which is where my misfortune begins. I know that there are a lot of people much more sick than me – gluten ataxia *shudder* – but I think that the personal stories are the only thing that convince others to get tested or to follow a gluten free diet once they are diagnosed.
When I was in my senior year of high school (May 2004), I began to present with idiopathic edema. I weighed 145 pounds. It started in my legs; I got cankles like a pregnant woman. Mostly it was a source of annoyance. I was 18, 5th in my graduating class, had a scholarship to Rutgers and was going to become a Biomedical Engineer. I had just finished a free class at Lehigh University in Physics while completing a full course load at my high school which included two advanced placement courses. Oh, and I had just gotten my varsity letter in swimming. I was on top of the world.
My first semester of college I was in marching band. I drank like a fish without getting drunk and partied like a rockstar, and the idiopathic edema was intermittent and mostly a nonconcern. Marching season began to wind down, I stopped drinking so much and began putting on weight, and the idiopathic edema got worse. I tried diet and exercise to no avail. In November 2004, I went to my doctor, who said “Freshman 15,” didn’t believe my protestations of diet and exercise, and told me to stop drinking. I stopped drinking entirely, the edema got worse, fatigue began to follow the edema, and brain fog followed the edema. I began doing very poorly in my classes. In hindsight, the alcohol was probably dehydrating me enough to keep the edema at bay.
Spring semester was much the same as the end of the first semester. The edema continued to get worse, I went to a renal specialist, an endocrinologist, a rheumatologist (what a jerk! “Is it just an aesthetic concern?” he asked). My father told the endocrinologist that when I swelled up, I looked like the Michelin Man. Thanks, Dad. No one listened to my complaints that I had trouble concentrating, that I was highly irritable, that I was fatigued. I guess I was just blonde and a college student so I must drink too much, not study enough, and not get enough sleep. My father is a nurse at a large hospital and picked a lot of doctor’s brains. One neurologist even sent me in for an MRI for a pituitary tumor. I gave up going to see specialists, and even my own doctor. They treated me like I was a hypochondriac. I did even worse in my spring semester of classes, and lost my scholarship. In Spring 2005, I weighed 210 pounds.
Sophomore year was much the same, except I began losing time. I would get on the bus to go to class and wind up back at my campus without remembering the ride. I would spend hours in my room reading over the same page of a text because I couldn’t remember the beginning of a sentence once I got to the end. I began developing anxiety and exhibiting antisocial behaviors, paranoia, and extreme fatigue.
It took me seven years to complete college, even after going on a (mostly) gluten free diet at age 23. I failed half of my classes, and the other half I barely passed. I developed such terrible edema that I got persistent water in my inner ear that developed into ear infections. I alienated all of my friends and half of my family, and ruined many of my relationships knowingly and purposefully, often without reservation. The “wheat rage” (oh, it exists!) took over more often than I am inclined to admit. I still continued to cheat on my gluten free diet, It helped the brain fog but not much else. How could these other symptoms be from celiac?
I stopped sweating in the humid NJ summers and would just overheat until I got dizzy and felt sick. Then I would take a nap. I napped a lot. I would sleep for about fourteen hours a day. I stopped being able to feel the ambient temperature, only the pressure from the humidity. When I was put on pseudoephedrine for water in my inner ear, I found it stopped the edema, and made me drop 20 lbs in one week. I started taking 240 mg of Sudafed every day. I started taking Hydroxycut to lose more weight, and found it kept me awake. I started taking hydroxycut in addition to the sudafed. I continued to spiral downward, adding depression and thoughts of suicide to the paranoia and anxiety. I refused to go to a doctor; they all thought I was crazy; I was convinced I was dying and there was nothing anyone could do. All of my tests for celiac came back negative, and the only person who had diagnosed me was an iridologist (my father refers to her as “the witch doctor”), so even though I felt better on a gluten free diet, I all but abandoned it.
I don’t know if this happened to anyone else, but when I went on the gluten free diet, in addition to the brain fog being lifted, it also lifted an emotional block that I never knew was there. I thought when I was younger that I was “emotionally retarded,” somehow. I never got deliriously happy or excessively sad, and even though I tried, I could never love my boyfriends. I also never orgasmed during sex (that might have been a failure of oxytocin release from the pituitary damage). I was callous and cynical, and I hurt a lot of people without realizing it or really caring. I felt like Data when they put the emotion chip in. I fell in love for the first time and it was AWFUL. The breakup was worse. January 2011. I got up in the morning to lay on the couch and watch TV and went back to bed in the same pajamas. I think I wore them for a whole month. I only showered and changed if I had to go to work. I never felt this way on the wheat. “Take out the chip. I never want to feel this way again.” I didn’t want to feel anything anymore. I know how people get hooked on painkillers now. I binged on wheat for a whole six months, and only went gluten free half-heartedly after that.
When my grandfather died, it was like a knife through my heart, all the more so when I saw the way my parents and sister would look at me after his death, although they tried to hide it. They were afraid for me. “Yes, my father passed away. No, the feeding tube didn’t work. He had celiac. Yes, Helen has it, too.” I didn’t eat regular food for a month after he died. I drank coffee and ate garnishes – olives and pickles, GF croutons. Food was the enemy. Food is what killed my grandfather. Food was going to eventually kill me, too.
I went back to my doctor, and the “witch doctor” iridologist, too. My kidneys and liver and gallbladder have been working overtime to compensate for the intestinal damage and leaky gut from the celiac, so I may eventually have dysfunction there. I found out a lot of things in my brain just don’t work right anymore from all the wheat I have consumed. Apparently my carotid arteries became blocked from excess fibrin in my bloodstream from my overworked organs, which started killing off the glandular tissue. Can I just say that even the spellcheck on this blog HIGHLIGHTS CELIAC AS AN INCORRECTLY SPELLED WORD! SO IRRITATING! I have damage to my pituitary gland (which is why my water balance is drastically mismanaged in my body), my thyroid (which is why my metabolism is in the toilet and I want to sleep all the time), and my hypothalamus is the worst, operating at only 10% normal capacity (which is why I don’t sweat when it’s hot and probably lots of other things since it controls homeostasis for your entire body – awesome). SO, basically the message was, cerebral glandular tissue completely SOL. And my doctor said, “Your sympathetic nervous system is at odds with your parasympathetic nervous system. Not much to be done about that.” If you are lost by any of this, I apologize. I majored in biology, and I remember more of it every day. So, the brain fog does NOT erase things, it just makes you forget where you put them.
I have come to terms with the fact that this is a condition that will affect the rest of my life. With the help of my doctor and loved ones, I plan to make that life happy and healthy. My current doctor is fairly progressive, and although he is on the side of the neurologist and makes me get checked for a pituitary tumor every few years, he is helping me treat my symptoms without knowing the cause. He doesn’t think I should suffer because he can’t figure out what’s wrong with me, especially when he knows how to help it. He has given me a low dose of adderall for the brain fog and fatigue, which I really recommend, but not if you aren’t staying gluten free. Then it makes you HIGHLY irritable. He is also making me take an inordinate number of supplements – B12, B complex, iron, selenium, antioxidants… The only thing I am apparently NOT deficient in is vitamin D. Hooray, my parathyroid still works. The holistic doctor I am seeing is also extremely helpful. I am taking a pituitary liquessence that is supposed to repair damage to your glandular tissue. I was fairly skeptical of that, but even before I began the adderall, it made me start sweating again. I did not miss sweating. It is gross, but it means that my body is beginning the long road to repair, and that is what matters.
I know this is a ridiculously long post, but I feel like it bears mentioning that keeping to the gluten free diet has helped me get my life back together after ten years of aimless floating. I want other fellow celiacs to know that there can be a light at the end of the tunnel. I no longer engage in physical and emotional self-destructive behaviors. I have succeeded in a romantic relationship, and am getting married in three months. I have not seen the wheat rage rear its ugly head in two years, and I am not taking one day for granted. I might have gone through life with no appreciation for it – but, I have celiac.
Helen.
Your story is heartbreaking, yet also inspiring.
You see that your life was destroyed by celiac and gluten
and you see that you can get it back by adhering to the GF diet.
Thank you for taking the time to write this all out because honestly, many people do not get the ramifications of cheating.
Your story speaks volumes.
You will probably be able to dump that adderall soon, too. The brain recovers as the body recovers. Be careful of taking it as you get better and better because you may not need it.
My sympathies on the loss of your grandfather.
Best wishes on your upcoming wedding.
I am sure your grandfather would want you to be be happy.
If there is anything I have learned from my own ordeal with long undiagnosed celiac and the horrid symptoms I suffered,
it’s this : don’t look back any longer. Move forward and suck the life out of every single day. You’re young and have been given the chance to start fresh.
Happy, healthy & long life to you!
Thanks tons for pouring your heart and soul out Helen. Happy to be your sounding board.
You know what Helen? I am the one you were meant to write this story for!
Part of my job description (loosely) is that I have to cut the cake people bring for their birthdays. It is so hard to cut the cake and not be able to eat it. Unfortunately, I usually end up licking my fingers – and then I’m having a slice. They will not give the job to anyone else and up until recently I’ve not been strong enough to say no! If I have some, I crave more and I don’t have the ability to stop once I start – it’s like a drug for me.
And then my family – whom I suspect a few should be on a gluten free diet – make me feel like I’m just being difficult, some even saying so out loud…
I was never tested for celiac but was tested for a wheat allergy when I went to the ENT that was working with my neurosurgeon when I was having my pituitary tumor removed. (Why does your dr keep testing for a tumor may I ask? No one has linked it but I suspect that they are.) I worked out the rest of the gluten and other allergies myself.
With the pituitary tumor, none of my hormones seem to be working, so I’m on meds for the following: estrogen, thyroid and adrenal. I self medicate on magnesium (always been a problem anyway), calcium, vitamins D & B, omegas and sometimes iron. Selenium sometimes but it’s quite expensive. I suspect there are some hormones they’ve not yet worked out I need.
I am going to print this up and remind myself why I am doing this. Thank you.
I just love you, Irish!
Why thanks, Kathryn.
Have we met? I think there’s a whole GD FB contingent I do not know (I know you’re “out there”, but I just can’t “get there from here.”
😉
Thank you so much for this article! I know how hard it’s been for me to go gluten free after being diagnosed with Celiac 9 months ago. I was just starting my senior year of college so completely doing it on my own was crazy. Your website has helped me so much with knowing there are other people out there other then me. A lot of my friends and roommates just don’t understand the severity and it causes me to get sick more then I should, even my parents aren’t great at it.
I appreciate everything you do for us with Celiac.
Thanks!
And this is why the jokes must stop.
I hate that you even have to write this, but I’m glad you did.
Some days it’s all I can do to get up and out to work. Considering mine is a very safety-sensitive job, some days I don’t make it.
It helps to know, now, WHY this is happening. But the fact that I finally understand what’s going on doesn’t mean others get it.
People tell me to lighten up on Kimmel and Fallon. I won’t. I can’t when I know there are literally millions like me who won’t be taken seriously as a direct result of their flippant comments.
I really appreciate you, Irish, Jennifer, and all who are raising their voices.
Thanks Ken.
This is a copy of an email i sent to Wicked Restaurant:
I attempted to eat at the Mashpee location on Saturday, May 10th with my husband, after finding it in Find Me GF. It sounded very safe so I was excited as I am Celiac and very sensitive. I ordered the GF flatbread when the manager, Michael, came over ranting about it being a pizza kitchen and there is flour EVERYWHERE. He asked what I was getting and when I said a salad he said well there is no guarantee flour did not contaminate it as there is no separate prep station. He literally ranted on and on, hands flailing!
Well after that I was nervous as who wants to be sick for a week, having to go to work, take care of a family, etc. with horrible flu like symptoms that happens when I eat gluten. So I proceeded to leave, appreciative that he gave me the heads up.
This is when it got ugly! He was so annoyed that I was leaving that he ranted on again but this time stating “I have dealt with six other people today with WORSE allergies than you!”
I have never been talked to with such insensitivity and callousness. I too carry an epi-pen and have been so swollen forcing me to take Benadryl and going to ER. My symptoms can last for a week with terrible stomach pains, swelling, and migraines. Not to mention the long term affects.
If your establishment is going to ADVERTISE a GF menu they should be educated in Celiac Disease and the affects of eating gluten! I would never have gone there if you did not have a GF menu. I know to stay away from restaurants that are not safe.
Since I chose Wicked very carefully, (eating out rarely), I was forced to go to a grocery store and eat at home that night, which is fine. I just wish I never had that horrible encounter with such a rude, insensitive jerk as it made me sick to think of other people he spouted off that speech to, so callously disregarding a very serious disease!
Please respond to this and educate your staff on the seriousness of Celiac Disease. This is NOT AN ALLERGY it is a serious disease that is lifelong, and wreaks havoc on ones body! This is not a choice and no one would choice to have it!!! But if you have a GF menu then people who have this disease expect at least an attempt to make it a safe place to eat. After all, everyone deserves a night out now and then.
Sincerely,
Joan Sullivan
Joan,
This is fantastic. I was actually thinking of sending out a preemptive letter to some restaurants that have a gf menu, but cross contaminate. Maybe I’ll include a graphic about what Celiac is and what cross contamination can do.
I don’t mind if a restaurant come right out and says “sorry, but we can’t accommodate you.” I appreciate that. But what’s the point of offering gf if people with Celiac can’t eat there? Oh right. Money.
And WE need to be vigilant and responsible for our own community. If Find Me GF is saying this is a good place to go, then there’s a problem there.
So true, Ken. I HATE when restaurants try to have it both ways. Either you’re GF **and** celiac-safe, or you’re NEITHER. You can’t be pulling off this sort of half-measure:
http://tinypic.com/r/2lmksbr/8
It reminds me of the Borat movie version of the Kazakhstan national anthem, that line about their swimming pool:
“Filtration system a marvel to behold: it remove 80% of human solid waste.”
Here’s the thing about Find Me Gluten Free, okay.
Those guys are just compiling a list of all restaurants that offer GF selections.
This does NOT mean the restaurant has taken GIG-certified kitchen preparation training nor does it mean it is “celiac-friendly”.
It may not even be safe for people with a mild sensitivity.
The site relies on people giving honest reviews.
But the thing is, some GF people can eat in places and suffer no ill effects like a celiac/NCGS might.
I use FMGF, but I would never consider something like an Arby’s safe for me. (fast food joints are not in the business of slow and careful preparation)
I read the reviews and decide what’s best.
When I post on there, I say I have celiac, the food was delicious and I had no issues. That’s my idea of a good review.
I have even changed a review after getting ill after a return visit and learning about their “shared toaster” and non-dedicated baking equipment (I was led to believe otherwise). ugh.
This is our obligation to pay it forward. So, keep in mind, anyone can say “we have gluten free food”, because yeah, sure fish and chicken are GF,–in their naked state 🙂 — and they are not lying about that—but it’s about the preparation.
If the manager, the chef or the waitstaff can’t answer a few simple questions about kitchen practices that tell you that GF food is prepared carefully, do not eat there.
http://www.glutenfreeliving.com/getting-started/eating-out/
Ha! IH, you pretty much described my Yelp reviews.
If I have a good or bad experience I’m going to put it out there and then people can judge for themselves.
GDude, Irish and Jennifer,
I’ve repeatedly expressed to each of you how very much I appreciate and respect each of you and the most valuable work you are doing here.
Another fine post. Dude, hope you feel better soon. Unfortunately we live in the times during which the love of many has already grown cold. However, there is always HOPE and we will perservere. I most definitely know in whom I believe and His love will never let us down as we slog through this brief as a vapor temporary journey into eternity. Please continue your educational mission with unceasing joy as difficult as it may be because you are making a difference in people’s lives and never lose faith in, hope for and love of our fellow human beings regardless of our circumstances.
Hap
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But as it is written: “Eye has not seen, nor ear heard, Nor have entered into the heart of man the things which God has prepared for those who love Him.” 1 Corinthians 2:9
Thanks Hap. Hope you’re healing.
Thank you from the bottom of my heart. I read this and I tear up and this is after 4 years of being gluten free. I check this blog and GD hasn’t posted and I know he’s suffering and I am profoundly sad. I watch the interview between Elizabeth and Jennifer and I get a lump in my throat. I wept for Shauna Ahern’s little one. And yet we’re mocked.
Our bodies have been ravaged for years so that even following a strict diet, problems continue to plague us.
Thank you for being the advocates that you are.
Thanks Sue…very much.
Hap, I hope you are continuing to recover. 🙂
Over the past few days – after watching all the backlash over the Kimmel bit and thinking about what I’ve seen and read in the year since my diagnosis – I’ve come to a conclusion. The medical community is mostly to blame for how people look at gluten free. The media is only regurgitating the information that is given to them. Even when they consult an “expert” doctor for an article that does include information about celiac disease, it still minimizes it by saying that only a small minority of the population actually has celiac disease. While that is somewhat true since it’s 1%, when you turn the percentage into the actual number of 3.8 million people it shifts the perception just a bit. Throw in the 6% who suffer from NCGS and you’re looking at 26 million. While I didn’t have to fight for a diagnosis like most people here, I still haven’t found a doctor who takes this seriously – even with my diagnosis. So ultimately, the medical community is to blame.
I do wish the jokes would stop. It’s unnecessary and it does demonstate an incredible lack of compassion (ie Kimmel saying even those who do it for medical reasons annoy him). But until the medical community gets on board and gives celiac and NCGS the respect and concern they deserve, I’m afraid we ‘re stuck with this. All we can do is keep fighting the misconceptions and educating the best we can. The rest of the world will, hopefully, catch up eventually.
Musicmidget
Thanks so much – I believe I’m recovering slowly but surely and I “see”, I hope, my retina specialists again on Monday, 5/19, to find out more. So far, so good – only time will tell.
I agree with you about the medical community. Last week my sister called me about one of her friends experiencing classic celiac symptoms and her Doctor told her “being gluten free was a fad” so I’m getting her set up with my doctors who have some good sense and compassion. Some of these doctors are lucky that I’m a lawyer who does not sue doctors and would rather work toward the positive results of fixing the problem.
Good luck Hap! Keep us posted.
I am so sorry you have been sick! WE’ve all missed you and glad you are back. We are having a hard time at our house–realized that there is virtually NO restaurant i can go to because of cross contamination, and on top of that my youngest son, who also has celiac, came home from college very sick because of cross contamination issues in the meal program
Karen,
Where do you live? If you are not in MD and ever come for any reason One Dish Cuisine is totally gluten free, and free of most common allergians…There food is very good too. I have a cousin very allergic to dairy, and this one of the few places he can eat. He cannot even tell its gluten free..
Hi Lisa, That restaurant sounds amazing! I wish I lived near there. Unfortunately, I live near Kenosha Wisconsin and there is very little for my son and me. In fact, we ordered off the Red Robin gluten free menu today as we had several appointments and needed to stop there for lunch—big mistake. We are both sick now……would have been less painful to just flush the $20 down the toilet, you know?
thanks for all of this. one of the many problems with the jokes is that, as i think we all know, cross contamination is the biggest problem in the life of a Celiac. There is no nuance in joking, and those who do go on a gluten free diet for elective reasons (perceived health and weight benefits or whatever reason — why should they be made fun of either, btw) are a big problem because they simply do not care or HAVE TO CARE about cross contamination. this bugs me.
would “comedians” EVER do diabetes “jokes”? of course not.
People do diabetes jokes ALL THE TIME. Just Google image it and you’ll see them. They are tasteless, they don’t make sense (esp. since most people don’t understand there are two types). Not to mention the fact that people peddle all sorts of dangerous crap to people with diabetes, some that can nearly kill them because they think it will “cure” their diabetes. I don’t think the people who are commenting here seem to get it, since people keep posting about how diabetics are somehow immune from all the jokes, and I’m getting fed up with it.
http://2.bp.blogspot.com/-f4ZDWA1rlII/TsqcxlupVJI/AAAAAAAAASs/v2G0BbILWRs/s1600/Wendy%2527s+Diabetes.jpg
http://www.youtube.com/watch?v=FgfjyZCTkLw
http://www.youtube.com/watch?v=ay0zDR2j9Dw
https://www.youtube.com/watch?v=CQR9aKj3_AE
http://cdn.teamcococdn.com/jokes/66553/1,1/560/aug-28-2012-cinnabon-is-at-work-developing-the-new-cinnabon-pizza.jpg
http://cdn.teamcococdn.com/jokes/64877/1,1/560/may-12-2011-oreo-is-planning-to-unveil-a-three-cookied-double-stuf.jpg
https://pbs.twimg.com/media/BHHBGEGCUAI36wg.jpg
http://cdn.teamcococdn.com/jokes/65550/1,1/560/nov-9-2011-wal-mart-announced-plans-to-start-selling-healthcare-in.jpg
http://i.imgur.com/rj4emgD.jpg
http://www.scpr.org/blogs/newmedia/2011/09/20/3479/best-charlie-sheen-comedy-central-roast-jokes-not-/
http://www.funnyordie.com/topic/diabetes
The Charlie Sheen roast in particular was horrible. After Tom Hanks got type II diabetes, the jokes were horrible. And when Paula Deen got diabetes, I got never ending jokes about how I would not have diabetes if I stopped eating butter.
“i will never forget the time at mcdonalds after my mom was diagnosed type 2 diabetic… we were standing in line she was in one i was in another so we didnt look like we were together… she ordered her meal and asked for a diet coke.. and as the girl went to get the diet coke she gave my mom reg coke and my mom knew it was reg coke by the taste so she asked for a new pop so as the girl went to get it i heard her laughing at my mom and “your meal is fatty as it is a diet coke isnt going to change anything” ”
” I had to force myself to vomit after receiving a coffee at Tim Hortons containing roughly 50g of raw sugar. And the really ironic thing is, on the other hand, because I’m insulin dependent, I actually can get away with eating a lot of things that type 2’s can’t. They have it so much worse because they don’t have insulin to regulate their sugars. I’ve heard other diabetics be made fun of for choosing to treat themselves. It breaks my heart to see these people (not even me, but other diabetics) made the butt of the joke, because I relate so much to how embarrassed they must feel afterward. ”
“Why I am being bullied for being diabetic?
I have recently discovered that I have type 1 diabetes and since then, people in my school have found and have been constantly bullying me for it. They tell other people not to go near me because I am a ‘druggie’ or I am contagious. They call me a ‘diabetic freak’, they steal my stuff and say I don’t deserve because I am diabetic. At first, I ignored it but now it is beginning to bother me a lot because they are distracting me when I try to do my class work.
I am only 14 years old and they say to me that only old people are diabetic and then they make snide comments about that. My friends have been defending me but some of them have stopped talking to me since my diagnosis. I am just finding it hard to understand why people are bullying me like this because I am diabetic.
Other things that they do is when a teacher asks me a question, they say to the teacher that he or she should be careful or they will catch something off of me. When I go up in front of the class, they comment and snigger and I have heard one of them say to their friend that I am a stupid diabetic *****. I haven’t done anything to them before. ”
“I have a “friend” who tells me, when ever I say anything about my diabetes “Shut up no one cares about your diabetes” or will tell me “your not low/high you just don’t want to do it” when I am.
I’ve gone to people at my school about it, and not much has been done”
“At school, teachers locked away my bag with medication in it. They wouldn’t give it back despite my desperate pleas explaining that I needed it to live, and didn’t know that I was becoming aggressive due to having low blood sugar and going into a hypoglycaemic episode. One child even ripped off my medic alert band, chewed it and then spat it back at me whilst calling me a ‘retard’.”
““I am made to eat my lunch with younger children so that a teacher can give me my insulin injection. I can’t sit with my friends which makes me feel alone and upset. Other children are always asking me why I am different and make a fuss because I am allowed to have snacks in class to control my blood sugars.” Katherine’s mum, Nikki, adds: Just two weeks ago Katherine came home upset. Her class had been doing an experiment with sweets and all 30 children were allowed to eat theirs, except Katherine who was told not to by her teacher! The school freely hands out sweets as rewards which is so unfair on kids with type 1.””
It starts when we’re children and never gives up. People, comedians, internet memes, videos, tv shows (Family Guy and South Park in particular), neighbors, friends, bullies. Many of us have put up with it since just after birth (people bullying, teasing, and joking about/to our parents) and NEVER ends.
Celiacs/Gluten Intolerant – STOP with this bullshit that you’re the only ones getting picked on, and the diabetics in your group of both types are somehow immune to this. There is all kinds of jokes about diabetes. We deal with this ALL the time. Welcome to the group, celiacs. Its now a shared burden.
I’m sorry to go off on you, but I really am getting upset about this.
You’re right about the oh-so-hilarious diabetes jokes. They’re everywhere, and a lot of doctors also have nasty blaming attitudes if they think you have type 2 and that can affect the quality of treatment a lot. All this stuff is connected, with the lousy attitudes and “jokes”.
I was initially diagnosed with type 2, but actually have celiac-related autoimmune type 1.5–not that people who really do have type 2 could possibly deserve the awfulness. There are a lot of encouraged misconceptions there too.
A good post about this: http://www.fatnutritionist.com/index.php/diabetes-is-hilarious/
Celiacs are at high risk for types 1 and 1.5. I read that in Norway, which apparently has the highest rate of type 1 in the world, they have started testing anyone diagnosed with it for celiac because they so often go together.
None of it is funny. “I have a real hard time with people who lack empathy and compassion” That’s it, exactly. 🙁
Irish Heart,
Thank you – such a wonderful and genuine post.
Sometimes, this place feels to me the same way walking into the back door of my childhood home does… acceptance and understanding from my people! 🙂
GD – feel better soon.
I love today’s blog. I live in an area that is supposed to be progressive yet celiac awareness is in the dark ages…no support groups and doctors who don’t know much. People have heard of gluten-free but only due to the “fad.” My son and I were diagnosed just over a year ago. Making the transition to a GF lifestyle was difficult, isolating and confusing. (We both went misdiagnosed for years.) This isn’t a complaint…I am so thankful to finally feel good and for my son to be an active, healthy teenager. We are working with local pediatric GI specialists to start a support group in our metro area. If we can help make that transition easier for just one family, one person ..it all is worth it.
Thank you for always sticking your neck out there for our community. After all, we are the only ones who truly know what this journey is like.
Thank you for sharing this. I want to post it in my cube so that folks at the office can understand why I’m looking so haggard this week (I was glutened twice last week – I was not as vigilant as I should have been). I also need them to understand why I can only sit at my desk for so long and why I’m about two beats behind where I normally am. I hate what this disease can do to me. For so long I clung to the promise that as long as I stayed away from gluten I’d be okay. Turns out that’s not entirely true. Sigh.
as usual, ih, ballsy and well articulated 🙂 bravo!
it’s “oh, gosh, you might get a tummy ache if you eat a *crumb*” or the times that you can feel the eyes rolling in people’s minds.
“oh, she’s just a picky eater………..” 🙁
i know one other celiac in my town – he CHEATS!! i love his gravy-scrapin’ self, but it makes me look like a paranoid freak.
“so, if you’re one of us, get on the bus. if you’re a freak like me.” – halestorm, freak like me
not me!
A little validation for you not wanting to eat even a crumb from the college roommate doctor of my pharmacy client.
We were talking last Friday and he wasn’t the least bit surprised that “gluten” was the substantial contributor to my eyepatch. He told me of his patient who was gluten free for over 3 yrs and doing pretty well. She visited a restaurant with her husband and mindlessly and unintentionally ate a delicious biscuit. She was in the ER in less than an hour suffering from a toxic reaction from ingesting such a large dose of gluten, her BP dropped to 80/30 and she remained in intensive care for a few days. She survived and is doing well again.
If a biscuit can do that – I don’t want even a crumb! So feel fully justified when you avoid even the crumbs regardless of what the ignorant and/uninformed may say or do.
don’t worry, hap 🙂 i’m vigilant!
i just worry about my kids not getting dx’d. my daughter already has been to the rhuemy about her eyes 🙁 when i was 23 i was also bulletproof…
Thank you to Jennifer Esposito and Elizabeth Hasselbeck, I became aware of my gluten intolerance too. And thank you further to Jennifer, I was able to find you and read your articles. Yey! What you have posted here are all very true for me too. I was especially baffled with my lack of energy, always sleepy, the pain (oh, the pain) and my sometimes, lack of cognitive skills. Where I though, at one point, I was just really really stupid that I got depressed especially knowing that all my siblings are very intelligent beings. And the anger…. *sigh*… Good thing my sister understands me when I have my outbursts. I just feel so helpless sometimes. Thank you for your posts, GlutenDude. Thank you for all the information and the stories, real stories of people like us. They have helped me a lot. Unfortunately, in my country, Gluten Intolerance and Celiac Disease is practically unknown, except for a select few. Good thing that there are celebrities here who are also gluten intolerant and slowly some people are getting aware of it. My sis and I are doing our bit too in letting people know and be aware of what it is by giving talks/workshops.
Again, thank you, GlutenDude! 😀 Keep on posting! Keep on fighting the ignorance!
Every bit of awareness and education helps Jertie so I applaud you.
Yup, that’s it.
Well said.
And, thank you.
Dude!
“… I have 1) inadvertently left my car running while I went food shopping. The crazy thing is when I parked my car, I knew there was something I should do besides put the car in park but just couldn’t think of it…”
Totally been guilty of doing that. Twice last summer actually, both times I locked myself out and had to call the fiance come unlock it for me.
Feel better soon Dude!
Also IH- thanks for always being supportive and giving the best advice in posts. I don’t comment here often but I come here a lot.
You two are the best.
Crazy…right?
You are certainly not alone in being “forgetful” once you’ve been glutened. A friend was treated at the Mayo Clinic because, even after a year on a gluten free diet, she could not seem to focus. She was in a perpetual fog. On an untimed IQ test she scored 125. On timed IQ tests she’d score only 75! She still had her faculties, but she couldn’t use them very quickly.
The Clinic determined that she had suffered brain damage from the Celiac disease and needed mental therapy. They assigned her page after page of 3 grade math problems. She needed to rebuild those synapses! It did the trick and she was able to return to teaching at her university.
They warned her before she completed her therapy that while she could still remember how to do things, she wasn’t able to do them fast enough. This presents a danger when driving, for instance.
So keep this in mind. What you have is very real. Being forgetful can have all sort of consequences. Please be careful. (Don’t leave that car running inside the garage!) Maybe it would be best not to drive for a week or so if you can help it!
Irish Heart, you just made me cry. Well you didn’t, but the words you wrote did. The battle we fight with this disease, before we even know we are fighting it, is so overwhelming. Knowing something is wrong, feeling like your being poisoned on a daily basis, having so many symptoms you don’t even know which ones to tell the doctors anymore because you’ve been diagnosed with so many conditions, put on so many medications, and yet keep getting sicker. Twenty years of being prodded and poked and told your symptoms don’t make sense. The last seven years being told it’s stress, and depression, it’s all in your head, your labs look fine. You need to eat more healthy grains, fruits, and vegetables, and take a daily vitamin, your not eating healthy and that’s why you feel ill. Your labs show your not eating right. The last year was unbearable, contemplating ending it all because your so ill, so much pain, can’t eat even got to where water wouldn’t stay down, if it did it hurt like hell. Couldn’t think, nothing made sense, couldn’t talk, you know what you want to say but the wrong words come out and it gets so very frustrating. Falling over and being covered in bruises because even though you know the wall is there, for some reason your brain says it’s not and you walk into it. Getting electric shocks in the brain, feeling like your entire body is a funny bone and you just whacked the hell out of it. The blisters on the skin, oh my, what an itch. An indescribable, painful itch that wakes you in the night because you’ve drawn blood from scratching in your sleep. The entire time doctors are telling you it makes no sense, you actually start believing that somehow you are making this all up. You question why?? Why would my brain think there is something wrong?? Why is my mind so cruel to put me through this if I am fine?? Am I a hypochondriac?? How do I make my brain understand I am fine so I can be normal once again??
Then you finally find a dr that kinda gets it. You’ve already been passing out now, losing huge chunks of time, became so weak just sitting up is exhausting, and a dr looks at you and says “I think you have celiac disease”. A sentence I will never forget, the other one he said that will stay with me till I die is after all the testing, endoscopy, etc. “if your body does not start to repair I don’t know if you will make it to next year”. This thing that my brain had made up, this nonexistent illness was killing me?? I really was being poisoned?? I knew something was wrong, I knew what I felt, I knew it wasn’t made up, but the medical community had me believing I was doing this to myself, psychosomatic. That was the word. It has been almost a year now since that diagnosis, and I find myself having to fight a new battle. A battle I would never wish on another, I have a disease and I spend 99% of my time having to justify to others why I can’t eat this or that, why I eat salad so often even though I don’t need to lose weight (salad is my safe food I can eat at work and not worry about heartburn, nausea, cramping etc). Do diabetics have to justify why they need insulin?? Why they can’t have so many sweets?? Does someone with cancer have to justify why they need treatment?? This is the only illness I have ever seen that you have to justify your treatment, but yet people still laugh and find it a joke. “Oh your on a DIET!!!”
So to have someone like you, Dude, Jennifer, and all the others that keep us going, fight for us, help us, love us even though you don’t know us, not judge us, go up against the big dogs in the world, it just truly brings a tear to my eye. You let people know, we are not cry babies, we are not annoying, we are not a group of drama addicts, we are people….real people, we have names, families, lives to live.
We are not a joke. We have a serious condition that has gotten the best of us all at one point or another and we fight daily to not let it happen again. We are loving, caring, compassionate people who have an illness. It is accepted more to say “no I can’t have a beer because I am an alcoholic” than to say “no I can’t have a slice of pizza because I have celiac disease”. An alcoholic at some point made their choice, we were not given a choice.
I appreciate and thank all of you so much for all you do for us. I only subscribe to a couple of gf blogs because of all the negativity and hate directed towards us. But I will never leave Dudes blog, you guys pick me up when I’m down, you make me laugh when I’m in a glutened hulk rage, and you keep us real. The people we are. You pull us through, guide us, and step in front to protect us. I shall forever be grateful for all you guys do for us. Thank you.
Wow…thanks Hayley!
Really hope you start feeling better soon Dude!!!
And big props for the image of
“a glutened hulk rage”, Hayley!
Hugs to you, IH
Irish Heart/Gluten Dude,
This is so well written! I am planning to share this with my non-celiac friends and acquaintences because it gives an honest and real perspective of living with celiac disease that I haven’t been able to describe as effectively on my own.
Oh my dear IH. What amazes me us people like Jennifer, IH, gluten dude, all struggling but still giving back so much.
Xoxo
I mean what amazes me IS. Not us. Stupid glasses nit on my head!
Ada,
I will probably never forget as long as I live when you and I started talking on c.com and we compared notes and realized we had both spent many nights walking round and round our houses quietly sobbing in burning neuropathic pain so our poor husbands could finally get some sleep after taking care of us all day long.
gosh, that was a horrible time –for us all.:(
yet, look how far we have come! 🙂
xxIH
I don’t comment much but I’m always here. Irish, thank you as always, very well written. You are a Godsend to me and this community. GDude I hope you are feeling better soon and thank you for starting this blog. I don’t know how I ever made it before discovering it. It’s great to know I’m not alone. Jennifer, thank you for being our visible advocate on the scene. I have been happy to see you making the rounds. Your appearance with Katie Couric was great along with Elizabeth Hasselbeck. To the community here at large, thank you!! It would be a lovely world if everyone adhered to the Dalai Lama’s words.
Mary said:
” It would be a lovely world if everyone adhered to the Dalai Lama’s words.”
Indeed, Mary, indeed.
🙂
Can’t thank you enough for writing/sharing this. I have 4 AI conditions (so far), including Hashimoto’s and Celiac Disease. There are so many effects on all body systems that I’ve largely given up trying to describe them to people – even doctors – and yet I still hear people mocking Celiac as a sort of ‘tummy ache’ condition. My whole life is spilled out in a jumbled mess. I can’t do things I used to. I can’t be the wife and mother I used to be and that devastates me. I agonize over the thought that my children may have to go through this. I had to quit a job I loved. I know more than my doctors, which is discouraging. I’m meticulous with GF, even a little paranoid, but I still get glutened, and can’t necessarily identify the culprit. Always in pain somewhere in my body, always dreading what today might bring. Always had a sharp mind but now I often can’t think, remember things, speak correctly, comprehend what others say, or coordinate movements; the effects on the brain are the scariest of all to me. Always feel alone, judged, mocked, or pitied, always putting on the smile and saying I’m fine because they wouldn’t get it anyway. Yes, the Kimmel thing hurt all of us, and it hurt me individually like a sucker punch. I hate drawing attention to myself at all, but this disease forces you to be on stage everywhere you go. So I do all I can to educate, but it’s exhausting. Just to hear it described accurately by someone who gets it means so much to me. I still doubt what I feel, question myself, wonder if my compromised brain is off track. This article reminded me to trust myself. Thank you so much; thank you also to the many who shared comments, which were as affirming to read as the article itself. No, there’s nothing funny about it to me.
GD/Irish
I love you both. You have made a huge difference in the community and have helped many people, you’ve changed lives. You may have saved lives. How many people can actually say that in their lifetimes. We can make it, even though some days its hard to even fathom going on with this miserable f-ing disease. The joke is on them guys, cause we have made it through the hard parts, let’s wait and see how they do when they are presented with such a difficult diagnosis.
Cheers on a Tuesday, is it bleeping 5 yet???
Jersey Girl
———————————————————————————
“And there’s nothing wrong with me / This is how I’m supposed to be / In a land of make-believe / That don’t believe in me”
Green day
JG
I heart you.
Thanks for writing this. I am going to share it because I am tired of the jokes, and everyday I hear about a new person going gluten free. One person actually told me because its healthier…A member of my family actually asked me for a list of things that contain gluten so they could be more careful for me. I smiled and that night I sent her a list I found, and memorized myself. When I was diagnosed with gluten intolerance because my celiac blood test came back negative, the doctor didn’t tell me what it was I did all the research. I am still educating my parents about. I can get sick by just touching something with gluten. I got some gluten into my system last week, and still feel pretty rotten. I have no energy, hot flashes like crazy, cannot sleep, and some of my joints hurt. I always bring my own food to luncheons because they never seem able to get the gluten free thing down. They try to say we can get you soup or even just a salad. Soup could have wheat in it, and a salad what if they put croutons on it. Or what if the salad dressing isn’t gluten free..Wish people would just understand… My favorite is my pregnancy cured my celiac disease…
As someone who was undiagnosed for over 15 years, I get the pain of people not getting it. My family was incredibly supportive when I was diagnosed. I just wish it had been caught sooner as I’m fairly certain that my mum had celiac as well. Perhaps if we only known we wouldn’t have lost her to cancer… I was pleasantly surprised recently when starting my new job to discover that although it is a small company (about 25 employees) that I was not the only gluten free eater in the building. I am the only celiac, but there were two others when I started that were gluten intolerant. Now there are four! That makes 5 of 25 employees who avoid gluten for medical reasons. We are educating the rest of the company well! They have already quit ordering pizza in from companies that don’t offer a gluten free option when we have our periodic pizza days. And we are careful to keep gluten free food separate from gluteny food when we have office luncheons. I feel truly blessed to be surrounded by others with my same restrictions. However, this article has inspired me to see if they is a support group in my area and if there is not, to form one. I was in a support group in my old town right after I was diagnosed and it helped a lot! Thanks for the great blog posts. I wonder what all the doubters would think if we sent someone to a TV show/interview like me and feed them gluten ahead of time. They’d get a graphic pictures of just what it can do. Give me a half hour or hour after and my body violently expels that poison. (By the by, that’s what my family calls gluten when talking about it with me and my celiac brother, poison. Cause it is.)
You guys are all amazing. You brought me back my sanity when my 7 year old son was diagnosed with a disease I had only just barely heard of.
You helped me to feel ok with the fact that for the first couple of months grocery shopping (ok grocery shopping still gets me!) made me cry and caused untold amounts of stress for me. Who stands in various aisles of the grocery store with tears dripping down their face because you can’t find what your little guy requested without any gluten in it?
A better question…why is there gluten in so much stuff?!?!?! Ahh!
I’ve come to the conclusion that I would probably punch Jimmy Kimmel or Jimmy Fallon in the face if they ever had the nerve to make those jokes within my reach. Talk about bringing out the mama bear!
My poor 7 year old almost got glutened this past week on a field trip with school. He wasn’t in a group with his teacher (who’s mother in law has celiac so she knows, thank goodness!) and she didn’t know there was going to be bread there to try. I’m still not sure if he tried it or not, he says he didn’t but well, here we are with symptoms. Though maybe he didn’t as his eyes are clear (he gets this nasty rash type weirdness in the corners of his eyes that we figured out is one of his symptoms…doctors thought it was staph or MRSA originally!) though he did try the maple syrup and came home wanting a bowl full of maple syrup as his snack. Crazy child!
Anyway, thank you, thank you for all that you do! I for one am just glad he got a diagnosis and that it can be controlled through his diet. He was a sick little puppy and it was scary watching him and not knowing what was wrong. I am also glad that his pediatrician knows me well enough to not just brush off my fears or what I’m telling him so we were able to get him diagnosed fairly quickly before things started to seriously go down hill!
Hope you start feeling better soon Dude!
Thank you Irish Heart. Words well said.
Hello Jennifer GD IH Pam
🙂
Thanks so much, I completely agree about all of these jokes. I think some of the psychological effects of celiac also play into this discussion (at least for me), in addition to the horrific physical ones. During periods of good and bad health, celiac has changed my personality– I can no longer be spontaneous, carefree, and adventurous with regard to food, which we all know permeates all parts of life. Due to my extreme sensitivity to cross contamination, I have found myself change from a mostly calm, non-anxious person to one who is constantly assessing the risk of gluten or cross contamination, and being far less trusting that I used to be. I’m sure some of this is seen as “annoying” to those who don’t understand, and often is caused by the fad of eating gluten free, where issues of cross contamination are missing. I can’t honestly think of any other medical illness that is treated with similar levity. Glad to have the community here that gets it!
GD & IH, Very well written. I would like to thank the both of you for enlightening me over the past week or so.
This was a little tough to read for me in light of the comments I made on your previous blog post. Simply put, I feel like the D***Head some of you referred to me as. I don’t think I really understood how having celiac disease could lead to so many other nasty illnesses. I mean I knew some of the potential dangers associated with celiac from doing my homework and speaking with my Wife who is a GI Nurse and her team of doctors but this post made me sit back in my chair and think for a while.
I am all about being educated on a topic and I must commend the both of you for providing me with some clarity. This post truly made me realize that celiac disease is indeed no laughing matter at all and I apologize if my comments seemed to have malicious intent.
I will be posting this article on my blog and sharing it with everyone to help increase celiac awareness. Hopefully more people will read this and get a better understanding as to what you guys have been up against.
-D***Head
Dear former DHead!
Well, I doubt that any of us think you are a D***head anymore since you really took the time to learn about this disease which has drastically altered the life of so many of us. Thank you for having the courage to apologize and to spread awareness of Celiac Disease!
DHead
I don’t speak for anyone else but me; however, for me you are now elevated to “Gentleman” status with my respect for you and your above post.
Thanks for your kind understanding and I appreciate your comments, assistance with future educational awareness and I look forward to hearing more from you soon. Celiac and NCGI really is as horrible as we have described – it would be very difficult to get this many people to accurately agree about all of the symptoms if not totally true from personal experience.
Respectfully,
Hap
Apology accepted DHead. It’s hard to understand all the nuances of living with this disease unless you actually do live with it. We ourselves often don’t understand it because the longer you have it, it seems to continue to manifest itself in different ways. We appreciate your willingness to share this and educate. That’s all any of us really wants is just greater understanding and awareness. It sounds crazy that an illness can be treated solely with food and even crazier that just small traces of certain foods can wreak such havoc. But everyone who has shared their stories and experiences here can attest to the truth of it. We appreciate your open-mindedness and willingness to help us educate.
And to Gluten Dude and Irish Heart – you done good! Sit back and enjoy some Tito’s!
Thanks for posting this, Gluten Dude, and for advocating for us I’ve found a few restaurants that are willing to accommodate my needs, but I’m still finding lots of problems out there. I had to deal with a really “snotty”, ignorant waitress on Sunday, but I chose to deal with her using humour. I told her twice that I needed to have my food without bread and no croutons on my salad (I had 2 witnesses, and both could vouch that I had told her I couldn’t eat the bread). She cut me off mid-sentence and brought my order WITH BREAD, and gave me attitude when I told her she needed to take the plate back to the kitchen because I wouldn’t and couldn’t eat what she brought, and I told her while ordering that I needed no bread. She reported me to her manager (for HER ignorant attitude) and I explained to the Manager that, yes, I have Celiac Disease and her waitress ignored me, which is why I wouldn’t eat what she brought me. The manager was perfectly understanding, but the waitress continued with her attitude throughout the meal. I could have stomped out of the restaurant in tears, but that would have ruined the outing for my Mom and let the waitress win. I needed to blow my nose, so I did a good job of it (blew my nose, picked it with a kleenex/pushed the kleenex up with a straw that I was finished using, and used a spoon handle to check for “stragglers”. I opened the kleenex and put it on my empty plate so the waitress could see my “artwork”; the spoon ended up in my glass, handle up). My brother was sitting beside me and we were just busting a gut (not sure about my brother, but I had tears rolling down my face from laughing so hard). I felt that if this waitress was going to give me snot, she’d get it back, figuratively and literally, lol.
Thanks, as always, for your insight. The more I learn about the disease, the more I have come to realize my family may not be immune to its affects. We might not all have severe reactions (although I’m realizing my 8 yr old does with her skin) but we are taking it more seriously. I hope some of my friends will read this article and say to themselves “Hmm…maybe that’s what it is.”
Now wouldn’t that be nice…
I may have teared up a little reading this in my physical therapist’s office this morning. Not just because Irish called me wonderful. :p
Being undiagnosed left me (leaves any of us) susceptible. I was lucky that my lifelong repercussions didn’t turn out worse. I was unlucky because what it left me open for was to develop CRPS. As for my celiac issues, I’m feeling pretty awesome. But as for what it left me with? It left me with a disease that will cause me to be in pain every moment of every day for the rest of my life. And the really messed up thing is that I’m thankful. I’m so incredibly thankful that I’m in pain, that I’ll lose range of motion, strength and function slowly over the years and all it is going to impact is my quality of life and it will be a slow decline. Thankful that I didn’t get nailed with something that could kill me. (Although the suicide rate of people with CRPS is insane, I don’t plan on being among them.)
None of us should ever have to be thankful that the hand we’re dealt is unbearable pain every moment of our lives because it means we’re alive. I pray every day for a cure so this stops happening to people.
It never ceases to astonish me, the stories I read on this blog, and the endless variety of very real health problems many people have had and are having, all because of gluten. You could fill an entire library.
I came across this webcomic today that I thought I’d share. It has nothing to do with gluten and may or may not be considered funny. But I think some folks here might relate to it anyway, at least in terms of how the doctor goes about his practice…
http://pbfcomics.com/archive_b/PBF246-Bee.gif
John
Thanks for my belly laugh of the day!!! Before I lost vision in my right eye 2 weeks ago because of undiagnosed CD for so many yrs, I had 20/12 corrected vision in both eyes. My buddies marveled at what I could see from a ways away.
After my 2nd of 3 surgeries in 4 days, I went in to let my retina specialist stick some more ice picks in my eye. The little sweet girl getting me ready for the doctor asked me to tell her how many fingers she was holding up – I said M’am, I can’t even see you much less your fingers. She said, I have to ask, can you see the letters on the wall (like in your cartoon) and I replied I can move toward the light but I can only see green/orange sludge. So I used to be able to see the “Bee” like the child before the docs zapped me – but I know they did it for my own good and future benefit.
Thanks again for the laugh – I’d much rather laugh than cry about it.
Hap
You were spot-on with this Irish Heart! I am so tired of the jokes. I’m still getting over being glutened on Easter Sunday. My brain still isn’t at capacity and it shows at work when I can’t remember how to do something I’ve done for years. I got zapped by a double-dipped tub of butter by my son-in-laws sister. I’m not blaming, because unless you live it you just don’t realize that something so small as a crumb in butter can take us out of commission for weeks.
I usually comment on facebook, but wanted to chime in here. AWESOME blog!! I love glutenfreegirl (her blog made me cry)and Jennifer, but Irish Heart, wonderful words! I am so thankful for you, glutendude, and all the power house Celiacs. I was so happy to see the pic of you guys in FL! Keep up the good fight everyone!
Thanks Kip!
C-KIP!
omygosh…always good to “see you”
xxIH
Thank you IH and GD for this post. I cried when I started reading it, but by the end I was smiling. It is nice to have validation that we are all suffering from true medical conditions, whether it be celiac disease or non celiac gluten sensitivity. It is nice to know that I am not alone in this…it’s been a rough GF month for me.
Although I am not on here as often as I’d like to be, I am grateful for the support of this online community.
Jess,
Thank YOU for your insightful and informative blog articles!
and you’re never alone, hon. 🙂
G xx
Thanks for all the kind and supportive comments. 🙂
I feel the love and I send it right back at ya!
To everyone who said “now I don’t feel so all alone, good!!. That’s the whole point. You’re not alone. 🙂
To everyone who has shared this path with me and told me his/her story during the past 3.5 years, I am grateful that you are in my life. We’ve come a long way!!
To those who may be reading this and thinking “holy crappers, those symptoms sound like me!” (or my mom, or my son, etc )–well, that’s why we tell our stories over and over again.
The goal is to spread the word so that no one else has to suffer
any longer. For all the anguish and pain this disease may case, there is hope and treatment and a brighter, healthy future.
Not everyone suffers complications like the ones I have described.
Early diagnosis and treatment is the key. And most of us feel better than we have in our entire lives!
Above all else, never, ever let any doctor tell you that your symptoms are “in your head” and never, ever make apologies to anyone about following the GF diet .
And if you ever need back up, tell them to talk to me. 😉
Cheers, all! and Dude, glad you feel better. (I was hit a few weeks ago myself as you know and honestly, I proofread this article about 15 times yesterday making sure I was making sense….. damn gluten head)
Thanks to you, IH and to Gluten Dude. Beautifully written piece. I’m just wondering though whether it’s going to reach the audience it should – preaching to the converted here on this blog? Could you send it to the conventional press (NY Times, Washington Post, USA Today) and other mainstream media (of course internet is mainstream these days!). It should be read not so much by the celiac community but by non-celiacs in particular).
Again, many, many thanks for all the good work you are doing.
You raise a good point and I’ve thought of that many times, Margaret, but unless you are on staff, an article like this would be relegated to a blog section.
I would have to insert citations from scientific and medical sources (not really a problem, but this is really an “opinion” piece) for it to be in the “health section”. And the article would be hacked down to fit a small space. We can try, but I am betting it would be rejected because of length alone.
Just take a look at the inane, hateful articles that discuss this topic in the Times. Sound like they “get” it?:
http://www.nytimes.com/roomfordebate/2014/02/20/is-avoiding-gluten-a-risky-fad-or-a-healthy-diet/the-gluten-free-diet-is-a-fad
It may seem that we’re just preaching to the choir HERE, but in the three years I’ve been an active participant in the GF online community (celiac.com, GD,and all the GF bloggers) , I have noticed more and more people reading along. 🙂
Online blogs & FB ….seems to reach more people than newsprint
these days. Many newspapers, once considered THE sources for fair and accurate reporting have become gossipy rags, IMHO.
You are right – my beloved old NY Times (I’m a New Yorker originally) has been publishing a lot of BS lately (not to mention the New Yorker – with its idiot cartoon). I’m not bashing the internet (or FB or blogs) but your average uninformed lay person who knows nothing about celiac probably won’t find his way to a blog called “Gluten Dude”. They won’t be looking or will get lost in the vast amount of info out there. (It took me quite a while to find this blog myself – I think at the time I was searching for very specific info on the lines of “as good as it gets” and it popped up. Or “doctor horror stories”).
Anyway – let me give this some thought. I have a number of contacts in the US journalism world; they might be able to help in getting attention (and full space) for an eloquent (and accurate) piece like yours.
Having said all the above, I find myself going into Pollyanna mode (again). This too shall pass… and the idiot media will move on to something else (although I cried when I read the post below about the child whose parents’ schoolmates were saying celiac isn’t real).
Huff Post has sought me out and has published one of my blog posts. I think I will submit this one too.
go for it. 🙂
W00T! 😀
Definitely do that! (And I didn’t mean to imply that this isn’t YOUR blog (with IH as a terrific back-up)).
well, he always says “my blog is your blog” 🙂
IrishHeart, you are the reason I come back to the GD blog, even when the Dude himself pisses me off about something he wrote. Your kindness and selfless giving of your time to the members of this community is wonderful, and your patience and understanding of the entire spectrum of celiac and gluten intolerance makes you a really valuable person to have around.
I’m going to take a few minutes to cool off after posting a heated response to another commenter earlier on this post, but I happened to see something wonderful on my Pinterest pop up that I thought was worth sharing. After we get through dealing with the bs that is all the jokes about celiac/gluten intolerance from the muggles without it, there’s a lot of people who have to then deal from the bs from the people within it and their constant “oneupsmanship” that comes from different folks saying “na na, my celiac is better than your celiac”. http://observer.com/2014/05/fear-and-resentment-among-the-gluten-free/ I thought this article does a really good job of explaining why people do it and how to help them recognize when to say “knock it off” with the dietary competitiveness.
I’ll take that as a compliment 😉
You know it! 😉
(In all seriousness, you do a really good job with this blog. I’ve stuck with it through thick and thin, and I think its one of the few reasons I’ve become so okay with celiac.)
Thank you, Connie. 😉 xx
I was diagnosed Celiac 50 years ago. (I’m now 53) there are no baby pics of me because I looked like a starving 3rd world child. My parents had social services called on them because I cried day and night. Back then no one knew about it and knew even less about treating it. Growing up this way I can say we are now pretty darn fortunate that there IS some awareness and we’re not still in the dark ages! We all need to keep pushing for awareness. Thanks for the great post!
Sharon, I think it’s amazing that you got a diagnosis 50 years ago. You must have had a doctor who was pretty on top of things. I’m happy for you that they found it early. 🙂
I have seen so many of us relate stories that we were very fussy babies. I was one of those kids. Cried day and night from the time I was born. Finally hospitalized when I was a year old because I just refused to eat. A weeks worth of tests only showed that I was anemic and they threatened to sick social services on my mom as well because they just assumed that she wasn’t feeding me. In truth she was desperate for me to eat. I also had relentless ear infections and sinus infections until I was about 9 years old. I still had them then but it wasn’t constant like it was before. I’m not sure if these stories are indicative of anything, but I can’t help but wonder if there’s a connection there too.
I feel so blessed to be part of this ‘community’. Having found this site just months ago I don’t feel alone with this disease. I live in a small town and I feel lucky because there are quit a few restaurants that serve GF options and have designated areas. One of the grocery stores had on the front of their flyer ‘May is Celiac Awareness Month’ in big bold letters and they provide many GF options as well. I have been sick since I was a child and knowing I can go out to eat and be ‘safe’ means so much to me. Please stop joking about this disease. Its real and its painful. Thanks GD, Jennifer, Irish Heart and to all the others who support us, even those of us in small towns!!!! Much love sent your way.
Thank you for speaking for us and not just us adults. My 6 year old daughter has Celiac and has come home crying because school kids parents told her Celiac is not real or kids put bread in her face. One day I hope she can say she has Celiac and be taken seriously. The only time she feels safe eating is with her “Celiac Mommy”. So thank you again Dude for sticking up for us. Feel better soon and keep up the good work.
Sorry about the bullying she is enduring. Makes me so sad.
Keep selling the truth! I’ve chosen to ignore people’s ignorance because I was becoming to frustrated. If I have to explain my condition in detail at a restaurant, on the rare occasion I actually go to them, I assume they are clueless and there is a great chance I risk “infection” (my word for being glutenised). Unfortunately, I let my guard down this past Saturday and have been paying for it since.
If people do not understand the condition they should refrain from shooting their mouths off. Hey, here’s a thought, maybe research it before commenting on something you know nothing about…just because you can’t see it or it doesn’t affect you doesn’t mean it doesn’t exist.
There is no doubt in my mind that I am way better mentally, physically, emotionally, socially and professionally since eliminating gluten 1 1/2 yrs ago, and that many of the ailments people have could be a direct result of their gluten intake.
Open your eyes and minds people, and thank you so much Glutendude for continuing to be there for all of us.
Thank you for this IH. I could have written this myself. So many people suffer needlessly for too long. I appreciate this more than you can know.
CD, thank you for letting me know that my words meant something to you.
(you know, there are those who think I am full of malarkey) 🙂
Best wishes and continued healing to you!
IH, after 20 years of needless suffering from misdiagnosis, I know every word is truer than true. 6 years gluten free and happier than I’ve ever been in my life! This diagnosis was a godsend. Healed, healthy and happy. I wish the same for every Celiac everywhere!
Thanks, CD. I always like to hear this from “veterans”. 🙂
25+ years myself. By the end (just before Dx) I was about as bad as it gets.
yet, your words give me renewed hope!! (and without hope, we’re all screwed. )
And every time I may need some encouragement, like right at this moment….someone comes and gives it to me, too. So thank you!
I think this way: “Every day is a healing day”.
Just wanted to say THANK YOU!! As my gut is rumbling so loud and is now swollen … and I know what is coming … I realized what I ate with that dang gluten … searching the internet and happened to come across your page. THANK YOU for reminding me I am not alone. While I would never wish this on anyone, there is some comfort in knowing that there is a community of us out there! Sometimes that reminder means the world!
IH I do NOT think you are full of malarkey. You are one of the smartest ladies I know. The jokes about Celiac are not funny, they are cruel and inhuman. People would not dare to joke about cancer,
downs syn, or they would not be tolerated. ignorance is bliss! Love all your posts. have learned a lot from you….Thanks.
Thanks, Caro! 🙂
Thank you everyone. I have learned more about the real-life personal costs in the last few months of following this blog than in the previous 2 years of going gluten free and trying to read reasonably well-vetted info. It makes me very sad, though. I am so missing my mom who died 4 years ago on her 72nd birthday. She’d had debilitating fibromyalgia for years before dying of a seemingly aggressive colon cancer. I really wish we would have known to try cutting out gluten and dairy (since that’s worked so well for MY fibro). She also had IBS for years, and intermittent brain fog (and figured she’d probably had fibro even as a child). She was such a smart fun woman when she was feeling okay. We can save and improve lives by all hanging in there and increasing awareness.
So sorry, Betsy. My heart goes out to you.
Sounds like your mom had celiac to me.
We are sure my dad had it too, but by the time
I knew what was going on with me, he was gone.
My sincere sympathy on the loss of your Mom.
Thank you, Irish Heart.
What a great bunch of comments and info on this site. Thanks GD Jennifer IH and Pam. Keep on Truckin
This just came across my newsfeed. It’s disturbing how much joy the author seems to have in writing this.
http://io9.com/your-gluten-sensitivity-may-be-in-your-head-1576897572?utm_campaign=socialflow_io9_facebook&utm_source=io9_facebook&utm_medium=socialflow
Yeah…I’m sensing the same thing all over the place. The backlash against going gluten-free is quite disturbing.
Well, let’s look at this rationally. 🙂
The study was peer-reviewed and published.
The conclusions of the study…. warrant further investigation. That’s it.
“The problems lie in the complexity of wheat and the ability of its carbohydrate as well as protein components to trigger gastrointestinal symptoms, the potentially false assumption that response to a gluten-free diet equates to an effect of gluten withdrawal, and diagnostic criteria for coeliac disease. Recent randomized controlled re-challenge trials have suggested that gluten may worsen gastrointestinal symptoms, but failed to confirm patients with self-perceived NCGS have specific gluten sensitivity. Furthermore, mechanisms by which gluten triggers symptoms have yet to be identified.”
>>>. This does not entirely “negate gluten sensitivity”.
However, even the celiac researchers have determined that the FODMAP diet has been extremely beneficial for people with various gastrointestinal diseases and there are studies now that suggest that NCGS could actually be a wheat sensitivity–as in some component of wheat is causing the symptoms— not necessarily gluten. (that study was out of Stanford) and appeared in Living Without magazine this month:
“MYTH #4 Non-celiac gluten sensitivity is caused—of course—by gluten.
FACT Experts aren’t sure.
The term gluten sensitivity refers to individuals who don’t have celiac disease but whose symptoms improve while on the gluten-free diet, says Nielsen Fernandez-Becker, MD, clinical assistant professor of gastroenterology and hepatology and associate director of the Celiac Management Clinic at Stanford Hospital. But gluten might not be to blame; it could be a different component of wheat.
“Clearly, more research is needed to sort this out,” she says. “The mechanisms by which gluten causes symptoms are not well understood. It’s not even clear whether gluten is the culprit in this condition. Wheat sensitivity may be a more appropriate name.”
ALSO,
There are other researchers, like Dr. Fasano who believe in NCGS as a clinical entity whose recent published collaborative study also discusses the FODMAPs/celiac/wheat allergy/NCGS conundrum..
” Recent studies raised the possibility that, beside gluten [13] and wheat ATIs [40], low-fermentable, poorly-absorbed, short-chain carbohydrates [21] can contribute to symptoms (at least those related to IBS) experienced by NCGS patients. These new findings need corroboration through additional studies involving larger numbers of subjects. If these studies will confirm these new findings, they will probably prompt a change in nomenclature from NCGS to wheat sensitivity to reflect the fact that, beside gluten, other components of wheat may be responsible for the symptoms reported by NCGS patients.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/
See the problem here?
But until all that data is examined, people should read all the science, all the research and look at the various gastro disorders before proclaiming “gluten sensitivity does not exist”.
It exists, of course, but there are probably many people who have some other gastro disorder (such as this problem with FODMAPs) that keeps them from feeling better because they assume it’s NCGS and they have never been tested for anything else.
But, as usual, the vast majority of people rush to judgement from reading a headline, posting it to social media and then the feeding frenzy begins.
The internet is full of opinions, mean- spirited people and false information.
I honestly do not know how you guys can stand all that nonsense “out there”…. this is when I am glad I am a dinosaur.
I also read the article stating that perhaps NCGS was due to a component of wheat other than gluten and thought “So what?”. Frankly I don’t understand how that would change a NCGS’s lifestyle other than being able to say they are wheat sensitive rather than using the word “gluten”. I don’t find it difficult to avoid barley or rye. Other than finding a possible cure, I’m not sure how this would matter.
Am I missing something? *shrugging my shoulders* I have had a heck of month so my brain isn’t the sharpest tool in the shed right now. :)P
Just to add to what I said, I see that Jules spoke to Dr. F about this and she writes:
“As predicted, the media have latched onto a new study which they say shows that non-celiac gluten sensitivity (NCGS) may not exist at all, and thus that gluten-free for anyone but diagnosed celiacs is just a fad.
In anticipation of this media response, I invited Dr. Alessio Fasano of Center for Celiac Research onto my radio show, The Gluten-Free Voice, on Monday.
He explained clearly how this study does not disprove the validity of NCGS at all.
This study was described as: “37 subjects took part, all with self-reported gluten sensitivity who were confirmed to not have celiac’s disease.”
(Aside from the fact that it’s one of my pet peeves for people to erroneously call it “celiac’s disease …”)
(IH note: I see I am not the only one who feels that way. lol)
Jules:
“This statement itself proves a fundamental flaw in its presumptions: results were based on a small number of “self-reported” people with gluten sensitivity.
As Dr. Fasano says, these patients very likely had IBS, not gluten sensitivity. Thus, it makes sense that their symptoms would improve on a low FODMAP diet, but not necessarily be affected by gluten.
For more on this study, and to hear Dr. Fasano’s complete explanation of NCGS, get comfy and have a listen to the podcast of my radio interview which you can download here:
http://www.blogtalkradio.com/gluten-free/2014/05/12/dr-alessio-fasano-center-for-celiac-research-the-gluten-free-voice-with-jules
I have more than one autoimmune disease one being Celiac & I really can’t for the life of me understand the comedy aspect for these late night folks and others. I don’t see these late night folks making fun of people with HIV, MS, Cancer or any other disease. Public perception is everything. They truly need an education about autoimmune diseases in general. There is nothing funny about any disease. Gluten Dude & Jennifer Esposito have been advocates daily for a long time and they give me hope every single day.
Dude – i’d like to ask a question and i want to be sure its not taken the wrong way….
I visit your site from time to time on my lunch hour and i feel like i see a post on how you have been glutened frequently (maybe its not all that often or i am just catching days when those posts appear) but i wondered if you have been able to find any sort of commonality in the glutenings ? If you dont mind my asking…How often do you eat out (away form home/food you dont cook yourself) ? I’m asking because for me, i rarely eat food i dont prepare myself, even when traveling i try to bring a decent amount of my own food. i just dont have trust and i dont want to be glutened and be unable to go to work, etc. Its just not worth it to me and i feel like when i eat food i did not prepare myself I’m letting others control how i’m feeling vs. myself being in control if that makes sense.
When i hear about people who are often getting glutened whats in the back of my mind is “why are you going out to eat then?” Let me be clear – its never your “fault” if you do your due dillegence, ask questions, etc and get glutened. Restaurants and others are to blame. Also, I know there are times when we must and want to go out. who wants to cook their own birthday dinner, who wants to miss the family tradition of going out on x holiday or whatever. i get that. I reallly do. I’m just wondering about those that just want to eat out on a tuesday or who dont feel like cooking (and hey i’m right there with you sometimes). How do you personally work this out in your life ? How do you walk the tight rope of giving up your control on how you will feel the next day to a restaurant vs biting the bullet and cooking for yourself at home or even bringing your own food to a restaurant to join others ?
I hope you understand i’m not trying to be judgemental just wondering how other deal with it. Sometimes i think i should be more adventurous and eat out more/give up some control but when i read things like your post i’m glad i dont. I try not to let celiac stop me from going out with people. i have foudn one or 2 places i can eat that i feel safe or i just bring a salad with me and eat it at the restauant. i have no shame in that !
I suppose what i sometimes have on the tip of my tongue but dont come out and say to someone who is frequently getting glutened, who’s calling off work, whos saying being glutened interferes so much with their lives (i am not talking about you here dude) “You can control this. Eat your own food. Don’t leave it up to others. I feel like you dont take it seriously when you leave it up to someone else to protect you. When you are calling off work for the upteenth time because you got glutened i begin to wonder and feel a little less sorry for you and want to cover your work.”
I know I’m off topic on this but your post really did bring all this up in my mind and i wanted to share it. Again not in an accusitory manner but more in an “i dont understand it” type of thing ! thanks for letting me get this out.
I think it’s a great question Tara…no offense taken I assure you. As a matter of fact, I like it so much I think I’ll answer it in a separate blog post early next week.
(Hint: I don’t eat out often and when I do, it’s usually from just a small handful of places I’ve been to. But I also choose not to live my life in fear, which leads me to getting hit at times.)
Thanks for not being offended. I was afraid it would come off preachy and i didnt mean it to. I just see such a big spectrum of differences on this. My “fearlessness” pretty much only occurs while traveling which we all know is not that easy with food issues. The other half is maybe my need to feel in “control” of my disease by cooking most of my own foods, etc. My boyfriend has also recently stopped having gluten in the house (other than beer 🙂 ) and that’s been a help to me as well as i think even though we were careful sometimes it was hard to keep seperate and it led to fights sometimes of him invading my Gfree space with his G ! He eats out at lunch and gets whatever he wants in a restaurant and doesnt feel deprived. I guess i just dont understand some who seem to have zero fear and go out there again and again and bang their head against the restaurant wall ! Obviously, to each his own but i feel like I’m the only person truly responsible for my body and health and just dont understand how others seem to put it into someone else’s hands so often. Maybe i’m just a control freak….BUT i’m a control freak who can truly say she’s maybe had ~5 handful of gluten related issues in almost 2 years and probably 4 of those 5 came out of town. thanks for entertaining my idea !
Dude, I was just trying to get up my nerve to ask you the same thing. You’re more experienced at this, but I wonder if something else is getting you.
I’ve been GF for about a year & 1\2. It took me 9 months of that to realize I CANNOT have xanthan gum or white rice in any form. Since discovering that, I’ve only felt MAJORLY “glutenized” one time. It was a medicine my doc presecribed. I don’t know what’s in it, but I looked it up on a drug information site there were loads of comments describing the same reaction from other people, though they were not listed on the documented side effects.
No more Pamela’s, no more packaged salad dressings, no more Sonic ice cream or Wendy’s Chili. That was my desperation, fast food fix, but it has xanthan gum! So do the Frostys!
I do hope you are able to pinpoint some villians you can slay.
I just read an article about gluten ataxia written by a woman who says fumes from a fast food fried chicken joint can gluten her! Man! I live close enough to a chicken place to smell the chicken and hear the drive though speaker! I don’t think that makes me sick. But it sure makes my mouth water sometimes!
Concerning your security code… foggy heads can’t always add 7+2. Lol
Hi everyone… catching up on back blog posts. Glad to see you’re still at it, IH. Beautiful, as always.
I’m in the process of doing two major things: finishing my dissertation and moving. Celiac affects both of these. Lately I’m usually hunkered down over a computer screen and while trying to finish my dissertation it can be really hard to stay true to the celiac precautions because I want fast, quick, and easy so I can get back to work. But if I don’t follow the precautions… then the diss will be totally dissed. My symptoms are largely neurological: fog, lack of focus, wild mood swings, hallucinations. Try writing a 150-page document with all that s*** going down. But I have to finish it because… no complete dissertation, no job.
Which takes me to the second major event: a move. I was fortunate enough to get a tenure track assistant professor’s position at a great school and I will be moving to Omaha, NE (from Ann Arbor, MI) in the next two months. Most of you know that on top of celiac I’m also a breast cancer survivor. So moving is a BIT FAT HAIRY DEAL. I can’t just go wherever I want for two reasons: one, I have to be someplace where my ongoing breast cancer survivorship can be supported; and two, I need to be someplace where I can have celiac and have a respectable quality of life. Fortunately in the land of Omaha Steaks (and corresponding steakhouses) this is a bit easier than in other places. But when you have to think about such things… this is no freaking lifestyle choice. It’s a medical necessity!
And sure… part of the problem is Big Pharma. If there were a drug you could take, celiac would be taken more seriously. But that’s not all Big Pharma’s fault (as hard as it is for the neo-Marxist pinko social worker in me to admit that). Part of it is how doctors model disease. (Which in my mind brings me to an idea that might have been taken seriously: what if celiac symptoms had been part of a House plotline?) Anything that doesn’t readily and easily fit disease models of cause and effect gets relegated to the realm of quackery, and treatments are viewed in the same vein as homeopathy. So it’s not just us… it’s also fibromyalgia, chronic fatigue, most AI conditions… coincidentally, all of which are more manageable while gluten free! Medicine’s notions of disease and illness are too small – and Big Pharma helps to reinforce that.
I have been reading lots about celiac disease. I stumbled upon it while looking up about the bowel troubles I have. I have had hypothyroidism, a pituitary tumor, skin sores, depression, extreme tiredness, joint pain, fluid retention and a few other minor conditions. After suffering with these symptoms for a very long time ( 23 years) I have decided I am going to ask to be tested for celiac disease. I realise it may take a long time for a diagnosis but I going to be pushy. I feel unwell most days and struggle to work ( which I do full-time). If going GF can alleviate or stop the symptoms I’m having I will feel like I’m born again.