Sometimes a celiac rant needs no introduction…
I live in Turkey and been diagnosed as a celiac 8 months ago. The thing is, every time I feel as if I’m doing real good, something goes real bad and I get glutened. And I feel as if my whole effort is stupid. I did not lose any friends over my gluten free diet but never asked them to be careful about my needs – that’s why. I always took care of myself everywhere we go. I always made sure to tell them not to worry. Especially in my country it is real hard to make people believe that bread is making you sick! We live by wheat flour here!
One of the most important thing that sickens me is my family. They actually are the ones that I expect the most but they give the least. I have been sick for almost 10 years before I got diagnosed and they always made fun of me, saying everything was in my head so after a doc said I was really sick which I was! I was really relieved- I did not cared if I had cancer! I was too desperate to prove myself! After it was sorted that I was celiac now- I was too weak, too emotional so that’s why I got sick (NOT because of my genetics apparently!).. All this did not stop there! Even though my dad (we share a house) can eat all the gluten he wants anytime he wants! only apart from the time we spend at home (approx. 2-3 hours a day); he still does not understand why he shouldn’t leave gluten crumbs everywhere!
My mom is the best just because she does try. My brother is not the best but his wife balances him – even made me a cake the first week of my diagnosis! But my dad… We always have a continuing battle. I started having heart aches and after a doc randomly said that I had a problem with my heart; I told him about it and he was like – they try to make money off of you, you are fine. This was the last drop! Hadn’t the last 10 years told him nothing? Nothing? I do not lie when I have cramps after I get glutened! I did not lie when I got depressed and wanted to die after being sick for ten years! And it definitely was not because I was weak! I am so mad, so disappointed. And the fuck, I feel alone! Apparently nobody does care and would care!
He is the one that’s supposed the love me the most. Fuck with this life.
And this country does not help you, they have no idea. When I tell people their look is so weird- how can gluten make you feel depressed? How can you not been having your period for the last 10 years because of gluten? How can you been throwing up etc etc. Even when I go out at night my friend thinks of me as the buzz killer because I cannot drink as much as them. My stomach is still sick. When I get tired my bf did not understand and always made me feel as if I am “not enough”. So we did break up at the end even though he was the one that is most helpful.
Fuck this disease and fuck the luck I have to have it in Turkey. America is the heaven, at least people are respecting enough. No week passes by without me getting glutened. And I walk around like a nomad with all my gf crackers etc.
What kind of life is this. This is not worth a life. I am apparently the greatest liability for everyone.
And did I mention gf products in Turkey are so so so expensive. It’s like a joke. The amount I pay for bread used to be the amount I spent monthly for all my food! I don’t have that kind of money. So kill me and end my and my familys misery. Apparently “they give and they give not to receive anything good out of me – not even my happiness which would be enough” shit, how I can be happy with you guys treating me like a lunatic?
So special thanks to you dad. You know nothing about human psychology.. And that fact that you don’t care just sucks.
Along with all this, it is so hard to keep a job when you are getting sick every week. I try my best, I get vitamins, I carry food, protein bars etc etc but even in a hotel when there is a dinner meeting it gets so hard. I got glutened last night from a hotel and this time it is really bad. I think I ate directly a pack of flour. Even at a 5 star hotel the waiter says I do not know and does not even ask the kitchen. When the chef tells you it’s fine there’s no gluten, you get real sick. What kind of a system is this.
I changed my food twice just to see from the open kitchen that they put a breadstick on top and remove it. I changed my salad just to see them remove crutons and twist the salad to another plate from the mirror. This is not working for me and I do not know how to be more careful. I come home to my bed to cry and find crumbs all over the bed because of biscuit package my father left so my cat dragged from the living room and played with on my bed.
These are tragically funny. I really am done with all this shit. I cannot afford to live apart from my dad. I will find no man to love me for who I am so that will agree to live in a gf food made kitchen because in this country everything is glutened. Everything you can think of. Even when you order a fruit they put gluten on it. Every factory produces something with wheat. This is like the Truman show version of my life just to see how long I can survive like this.
Dear glutendude, feel free not to post this, or to crop it as you want. I just abruptly stopped at some point because I realized I can write pages and pages and pages about how I am being treated because it hurts. Even if nobody is reading this mail thank you for the celiac rant.
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac. With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away. There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner.
Positive energy brings positive results.
Don’t you feel better already??
Oh boy! I hear you! I grew up in Kuwait and Egypt, and only this last summer (I am 44) did my mom admit that I had had unexplained stomach aches for most of my childhood. She also started realizing how much gluten was in things. Can you have your mom and sister-in-law sit down with you and first your brother and then your dad and explain how difficult this is? If the whole family presents a united front to dad, that might make a difference. And Maybe sit down with them and figure out some kind of kitchen strategy? We have a vacation home where there is a shared kitchen, and I have figured out one space where I can keep things gluten-free when other folks are around. I have marked gluten-free cutting boards, and a gluten-free shelf. Can you get some canisters that are only for your gluten-free stuff? In terms of meals out, that was a hard one for me at my last job. My boss insisted on taking us out, to a new restaurant each time. If you see them just removing the breadstick, don’t eat it. Eat before the meal, or bring a safe snack or candy bar. But I so hear you in terms of gluten being dusted on everything. *hugs* I wish I had more concrete advice to offer.
Dear Emailer in Turkey:
I’ve felt those emotions of desperation. I read with my 1 eye (because my other eye is still recovering from a celiac induced vitrectomy – you don’t want to know the details – after my 5 celiac caused retina surgeries and 3 types of cancer) every word of your celiac rant and empathize deeply with your predicament.
In 13 days I will “celebrate” 3 years of trying to avoid every crumb of gluten. My wife and I laughed last week that as soon as I get my vision back, this walnut sized mass removed from inside my jaw and my tooth replaced then I will be fine again! All thanks to Celiac Disease and me now fully understanding the challenges thereof.
Even though there are days I don’t feel like getting out of bed, I get up anyway, put on my smile, put one foot in front of the other and conquer another day. I encourage you to focus on all the many goals you can accomplish, the lean meats, fruits and vegetables you can enjoy eating and the beauty in each day. Others around you will be blessed as a result and you will lift them up rather than them pulling you down. I know it can be difficult but the journey will be well worth the effort as you conquer each day. I’m constantly encouraged by the facts that I’m not on chemotherapy, I’m still above ground, I eat healthily every day and I take no prescription medication.
YOU CAN CONQUER CD and be stronger as a result of the battle. Although there are many more, two words of wisdom for your current state:
“Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak.” — Thomas Carlyle
“If you are going through hell, KEEP GOING!” — Winston Churchill
You have many of us in the same boat with you, and more everyday, who care for you and hope for your victory! We can all get through this together!
Encouragingly,
Hap
“I complained because I had no shoes, then I met a man who had no feet.” Reading your letter makes me feel that way. You DO have it harder than we do in America. I am sorry for all you are going through. I was diagnosed 20 years ago and there was very little celiac awareness in America back then, so I do understand how alone you must feel. Your first order of business is to focus on yourself and try to be 100% gluten free or you will not heal and continue to be depressed. I cannot afford GF products either or they are not available in my rural area and I make a bread out of 2 cups cooked beans, 4 eggs, 1 tsp baking soda, 1 Tblsp honey. Puree in a blender or food processor. Pour the batter into 4 bowls and microwave each for about 4 minutes. Or pour it all in a baking pan and bake in the oven. I am telling you this recipe to make you start looking at food in a new way. Unfortunately you cannot change your family, you can only change how you react to them. Carry safe food with you everywhere, keep your bedroom door closed, talk to your mother about using one cupboard or area of counter for only your food. My other suggestion is that since there is no awareness where you live, once you come through this and regain your health you could be the person to make changes and help others. I started a celiac support group back then, with only 3 members. I started a recipe blog. I invited new celiacs to my house or went to their houses and helped them learn to cook GF. It really helped me heal and get over the anger. Think how strong you are to come through 10 years of being sick. You could use that strength to help others and I think you will.
That should say 3 cups cooked beans. Sorry. I use either navy, pinto or black beans, but any starchy bean could work. You can also add flavors like cinnamon or fruit.
Me again. 🙂 I did a little googling, and it looks like a lot of the foods you have there are the same type I grew up with. If you have some kind of Asian or Indian market that you can go to, you might be able to find some more options to play with. I had used rice paper as a substitute for phyllo, with a gooey/wet filling, it does work (not with a drier filling, though). I’m playing with something called poha, a flattened rice flake, as well, for things like Omm Ali. And there are little rice noodles that can take the place of vermicelli when doing that kind of rice. Finding decent substitutes will help a lot. Or quick things that you can make to snack on. The worst thing is not having the right gf bread. But you will find the right options for you. I also like the idea of setting up a celiac support group.
I do not have much more to offer. The posts so far say it all. I think you have put this out to all of us on earth. Just know a Grammy in Nevada, USA is feeling your words and emotions. Know you are doing the best that you know how and so is your family. Read a book by Brene Brown called “Rising Strong”. It has changed the way I think of my recovery. This is important to know what to do when you don’t know how to get back up. Take it a day at a time but protect yourself every little second. Find a good probiotic. VSL#3 saved my life. We all on this earth feel your cry for help. Love is powerful even half way across this earth. Feel our love and concern and keep us involved.
Even with a supportive family, I still have to be vigilant. I got a lot better, when I stopped eating all grains including rice and corn. That cuts out a huge added cost. Try eating just fruit, vegetables, meats, and nuts. A lot of people don’t eat at restaurants at all. I take my own food to parties, work, and trips. Can you purchase a large cutting board to be your gluten free kitchen surface then keep it in a bag or box when not in use? Pot a towel down on the counter before you put your work surface down. You may need a few other kitchen items such as a pot, pan, or strainer that are not scratched and/or contaminated. Don’t forget wooden spoons hold onto gluten. Good luck! You came to a supportive community!
I was diagnosed 15 years ago and trust me, having Celiac back then was about how you are explaining it is in Turkey. I had NO idea how many others there were out there, and my food choices were like nothing. I lived on cooked beans and rice chips or crackers for a long time because not only could I not eat gluten, but I couldn’t eat eggs (still can’t), beef (can eat some, now), dairy (none … but at least now I can eat butter and hard cheese and yogurt), soy (still can’t), tomatoes, and I cannot eat any corn except blue non GMO organic chips. Any other type of corn makes me sick. Weird. I know. Anyway … your life WILL get better!! It took me nearly 15 years to really figure out how to keep from getting glutened, but I made it … and so can you. You will have to come to the realization that this is what you got and you got it for a reason. Just accept that. Learn to accept what you can’t change and your life will become way easier. Learn to be grateful for what you do have and not resentful for what you don’t have. Lean on the Creator … He truly will be there for you if you believe, and trust that He has a plan for you. In the beginning, I thought having Celiac was a curse. I now understand it is a blessing. But, you really do have to get all the materials on this disease that you can find and sit your Dad down and show him how he is killing you if he continues to pretend that you are not sick. He is your father, and he loves you … he just doesn’t understand. You love him … so let him know how much he is hurting you by being in denial of your disease. Many, many people in this country absolutely still do not understand! As a previous comment stated, you could be the one to help start Celiac Disease awareness in your country! You have all kinds of support right here to help you get something going there. I know that there are a LOT more Celiacs there in Turkey who need someone like you to help them … you just don’t know them yet. But you will. We are not put here on this earth just to have a good time. We are here to help others in their struggles. You have been given an opportunity to be a huge help to many, many people. Glad you reached out here. That shows you aren’t really ready to give up. Great rant, by the way! I would give it a 10 out of 10. Welcome to the Celiac Community here. You are not alone. Don’t ever forget that. You will find friends who think you are great … you will find a bf that treats you like a queen. You need to start living as someone with Celiac … because that is what you have. Embrace it! Don’t hate it. You can do this. We all totally get what you are going through. Yeah, it is better here in America … now … but only because Celiacs started fighting for it to be better.
Lots of good support, information and good ideas provided by Gluten Dude and community. But also check out the following websites, they may help you explain Celiac disease to your family, and may even help you find others in your area for support:
Turkish Coeliac Society: http://www.colyak.org.tr
Association of European Coeliac Societies (AOECS): http://www.aoecs.org
oh hell.
well at least you found us. we can be part of your family from the U.S. you know I don’t know why we were dealt this hand in life and we all have been at a point of fuck this shit. but somehow we make it through because that is what defines a person. right?
you can do this. we got you friend in turkey.
health and love-
Jersey Girl
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Bir vurmakla ağaç devrilmez.
English equivalent: A tree won’t fall with a single blow.
“A difficult task, e. g. removing a person or group from a strong position, or changing established ideas cannot be done quickly. It can be achieved gradually, by small steps, a little at a time.”
I know this is going to sound crazy and not helpful, but there are people in my life who also thought Celiac and GF wasn’t real. What changed their minds? What they saw once I was GF and finally feeling like a normal person. This includes several doctors who told me I need a psychiatrist and that there was nothing physically wrong with me.
In the meantime, you can’t wait for your father to come around. His reaction is hurtful but set it aside and focus on finding a way to make your food safe. The internet is a great resource and I know there are a lot of blogs dedicated to frugal GF food. You can do this.
Hang in there.
The FIRST thing to do is stop looking over the fence and seeing only the green grass. It is no easier in America or ANY country for that matter. We each live in a microcosm.
It took me 40 years (yes that is forty!) Of suffering BEFORE a doctor even considered that I was even possibly actually sick. Up to that point the excuses were
“You just need to be more positive. ”
“You are depressed. ”
“You are attention seeking. Just stop going to doctors and you’ll feel better.”
You have to be anorexic. No one can.lose weight while eating.”
“Eat more breads and pasta.”
When I was literally hours away from coma due to organ failure, I was forced to change doctors. He was the first to actually LOOK AT ME.
I was in step down ICU two days later.
Family still does NOT get it! Its been 20 YEARS! One member actually put gluten into foods on purpose to “see if I ‘reacted’. How that right!
Others call me all manner of names and accuse me of being “picky”!
I was so seriously damaged that I can’t digest anything raw! And the fool doctors just threw even larger doses of NSAIDS at me which left my stomach all ulcerated. The list of foods that I CAN eat I can list on just my fingers (withou using thumbs).
Even my church believe “a littel bit can’t hurt” because thay are too lazy to include everyone in the rituals.
I am in pain beyond anything any terminal cancer patient has ever described. When I try to just commiserate with them, THEY SAY, “thabk God that I am not in your shoes.” I tried pain meds. Nothing eases nerve damage pain.
I had to quit taking life saving medications because as a US citizen, I have NO RIGHT to an ingredient list for those medications. So I am now faced with slow death by gluten poisoning or (my current choice), slow death due to a totally treatable illness.
In what universe is that OK?
I don’t have to mention the lovely folks in my government who passed the law that allows money hungry corporations to self police the amount of gluten in so called gluten free. RIGHT, cause that is working so well. Let the fox guard the hen house. It has never worked before. But what the heck no one really believes in this gluten stuff in the first place.
I choose what goes into my body. I threw family OUT when they refused to do what is necessary to keep me alive. I no linger even speak to the ones who gkutened me ON PURPOSE! Why is that NOT premeditated manslaughter?
And I am sick to death of the goody goodies who go around claiming tjis disease is no big deal.
I eat only what I make.
Tjis disease sucks! You got that right.
But not one of us leads a charmed life. Picturing that others have it so kuch better only leaves us sad.
To those who want to say,”at least its not cancer” – that is the fallacy of relative privation. That is the same as saying, “someone else is laughing harder so I am not alliwed to be happy. ” again just anither way to engender depression in ourselves.
Live the life you have been given.
Just say, “no” to every single person who does not understand.
Educate those capable of learning. One thing I have ignorant people do is to choose their favorite meal and eat it every day all thru lent. No cheating! Too bad if you can’t find ingredients – go hungry (like me). Too bad if you’ll throw up if you have to takenone more bite of it. Thats is my EVERY MEAL. It works on those who have the desire and ability to learn.
Walk away from those to ignorant to learn.
Do whatever it takes to live. OR choose to allow these relatives and friends to slowly starve you to death. For DEATH is the end result of untreated Celiac.
You can choose. You are smart enough. You DESERVE to live with proper medical treatment. In our case, that medical treatment is 100% gluten free foods.
Good luck
Been the organ failure route. The docs were gonna do a liver transplant due to liver failure. Kidneys failed. Had bilateral pneumonia and congestive heart failure. My body was so full of toxins that my brain was swimming in them. I had brain damage and personality change. I even named my new personality “Lily”. After 6 weeks of being gluten free, “Lily” went away. (I kind of miss her..she had no inhibitions nor a filter between the brain and the mouth. My husband was very supportive as well as being stunned and mystified by the whole thing.) Liver, kidneys and heart are all OK now 3 1/2 yeas later. It took awhile to get educated and the education of my friends and family is ongoing. The neurologist told me that the damaged brain cells taught the new cells their jobs. I’m only slightly less bright than I used to be. I test myself by doing puzzles and games. My scores are slightly lower than they used to be and it takes me a little longer to do sodoku puzzles and crosswords.
My best to all who have to put up with family and friends who don’t believe you. Please show them these posts. It may help.
Yes, you at least need gluten free kitchen items if you can’t convince your family to make your kitchen entirely gluten free, which would be better. Whenever I am sharing a kitchen with gluten eaters for more than a few days, even if I have my own cooking utensils and pots, somehow I still eventually end up feeling sick. As for eating out at restaurants, I’ve learned to just bring my own food at all times, or I just don’t eat. Often, I will pre-eat before a work event, if I know it’s going to be an environment where I will be judged for bringing my own food with me, or if it won’t look weird at that particular event, I just bring my own food with me in a glass Pyrex dish. I have to be prepared to answer a ton of questions about it when people see me eating my own food and want to know why, but it’s better than being sick. I eat only what I make, except for dinner out at a carefully vetted restaurant (one where they have a separate, gluten free preparation area and I’m convinced the staff knows what they are doing) maybe once a month. This level of strictness is what really finally helped me heal. I’ve dealt with the same struggle to get diagnosed (I was sick since age 3, and not diagnosed until 30), and all of the same kinds of insensitive comments that you have experienced. I think we all go through that wherever we live, but you learn that it’s either deal with the insensitive comments as part of it and just take charge and take care of yourself, or try to blend in and not “inconvenience others”, and then ultimately stay sick your entire life. If you choose the first option and see how healthy you can be by taking care of yourself, you’ll won’t regret that choice.