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…where I go to a party and start eating all the yummy food without looking at it first. And then someone will point out that I’ve been eating wheat. And then I look down and see the pile of crackers I’ve been stuffing my face with. Then I completely freak out and and have a terrible reaction.
I’m a 23 year old female from the USA.
I began feeling sick in the winter of 2009. It started with some stomach aches, pretty spaced out for the next year. By the summer of 2010, it became more severe. I could barely get out of bed due to exhaustion, I was in the bathroom for most of the day, and I was literally in pain during every waking moment. I would wake up in the morning, stay awake for an hour, and need to sleep again for another 8 hours because I was so exhausted and in pain.
At the end of the summer of 2010 I went to the gastro doctor who gave me a blood test and I tested positive for Celiacs disease. He said that the blood test was not 100% accurate and I would need an endoscopy/colonoscopy to see if I had Celiac. I got the procedures, and he found ulcers on my small intestines but said I did not have Celiacs disease. (Over the next year, I got another endoscopy with another doctor who also said he didn’t find anything but the ulcers).
The next year was spent with doctors using a “trial and error” basis to figure out what was wrong. We tried not eating milk, which was unsuccessful. He then put me on medication for Chron’s disease, which was unsuccessful (and expensive).
I was eventually diagnosed me with IBS and sent me on my way.
Still sick at the beginning of 2012, I started a gluten free diet on 01/10/12. After about a month of eating about 75% gluten free, I felt a little bit better. I decided I would 100% give up gluten and see what happens.
Gradually, I stopped feeling tired, stopped getting stomach aches, and was able to regain my life. It took about three months of being on the gluten free diet for me to feel almost perfect again.
Today, I eat 100% gluten free and I feel absolutely perfect. People always tell me they feel bad for me, but I don’t care if I never eat a cookie again because I’d rather have my health any day.
I was diagnosed with a gluten intolerence but I think its celiac. I started having symptoms around October, it was actually around my birthday. I started having stomach pains where I had to stay home from school because I was in so much pain. Finally, my parents took me to the doctor because they thought I was faking it at first. I had a scope done almost on my birthday which I was very upset about. The scope came up negative for everything. The doctors thought I was faking it too. They tested for everything they could think of. When I had my follow up appointment the doctor said I might have a sensitivity to gluten or celiac that didn’t show up, which is kind of strange. I was fine for a while when I stopped eating gluten but then I started having the same pain. We went back to the doctor and they did these weird breath tests. They gave me lactose, frutose and another one that I forgot the name of. I had to drink these horrible drinks then go in and have my breath tested every 10 minutes for an hour. They found out that I am also lactose intolerant. I have been doing pretty well now, it has been about 10 months since I was diagnosed with gluten intolerance/celiac almost on my 16th birthday.
Hi, my name is Chantal, 25 and I’m from the Netherlands.
After years and years of being constantly sick, tired (No Exhausted), I finally learned that I have celiac. Call me crazy. But I literally cheered when the doctor told me this.
My story goes back, starting five or six years back. I was the girl that was always tired and had always stomach pain. And even though I had stomach pain when I was a little girl, I was always happy and all. It was IBS in the first place for years.
But a few years ago my body started to change. For some reason I became tired. Exhausted. Always exhausted. Plus stomach pain (including ofcourse visiting the bathroom too many times). I just started my first real job and I was growing into the grownup life. But the stomach pain and exhaustion never left.
Asking my doctor about this, they told me it was stress. It was hard for me to believe it. I was a 20 year old woman, who couldn’t even go for a great shopping trip without being completelty dead of tiredness afterwards. But my doctor said it was stress. What could I do? I was young, I didn’t have the guts to speak up for myself and so I let it be. Not satisfied ofcourse.
Not long after that the dizzyness started and I went to test my blood. Result? Amenia. They gave me pills and that was it.
But my tiredness never left. Yes. For about two months because of the iron pills (not sure if that is the right translation, sorry if I have it wrong), but after that I was back to square one. Tired, stomachpains etc.
I became trapped in the visual circle. Me going to the doctor to get answers because of my tiredness, doctor telling me it was stress, blood test, Amenia or low B12. And this happend every year. It made me crazy, cause when I asked the doctor why my body needed the iron pills or B12 shots every year, he told me it was just because my body didn’t take up the vitamins out of my food, or that it was because of my period (which was bull, because I was on the pill and my period was normal to low. Barely any bloodlose there). When I asked him how that was possible, he didn’t have an answer for me.
Last april. Midway the month. It was on the morning right before going to work when I became really dizzy. I called of my work and lay on my couch. My body seemed to be exhausted. I could barely walk to my bathroom (And my appartment is really, really small. So it’s not that far). It was like a breakdown. Like my body gave me a last warning. To stop me from keeping me going.
The next day I went to the doctor and he told me yet again that it was stress. That a 40 hour workweek was too much for some people and that I had to take a step back. I told him that it was crazy because I was just 25 and that normal people of my age could work for like 60 hours without feeling like this. But he said that it was for everbody else different and that I just had to work less. As an extra he told me to test my blood, just in case and that was it.
A few days later the bloodtest came back, but there was nothing wrong with my blood. Doctor yet again told me it was the stress. But I didn’t believe him. I was sitting at home for 5 days and this was not stress.
Eventually I did something that doctor’s hate. I search the internet to find out what I had. It didn’t took me that long to figure it out. Celiac. I had all the common symptoms. So I called my doctor again. Asked him if I could test my blood for Celiac and a week later I had my first answer; the changes of Celiac where High. (Even the doctor was surprise. Jerk).
It took my again six weeks (Meeting the specialist in the hospital, getting the real test where they take a part of your small intestin etc) before I had my real answer. Celiac. Marsh 3 B/C. No doubt about it. I was seriously sick. It wasn’t stress, it was my body who hated gluten.
Now I’m two months gluten free and I must say that things are going so much better now. I didn’t have a lot of trouble accepting my diet, because I already noticed how my body responded to the new diet. But I have to be honest. Things are not easy when you are celiac. When people at work celebrate their birtday, I can’t eat the cake and just stare at it. I can’t go out to dinner so easily.
It’s now that I realize how simple life is without Celiac (or any other food intollerance). People complain to much when they can eat everything. I wish I had the change to eat one more time pizza at a normal place. Or buy something sweet from the bakery. Or even eat the cone of the Icecream.
I’m not mad at my body. But I just miss the simplicity. If I want to eat bread. It takes so much time or so much money. I can’t buy it for one dollar (or euro in my case) and if I want to eat gluten free stuff, I need to bake it myself. Trying to find recipies to learn how to bake it. And even eating dinner isn’t as easy as it used to be. Thát is what I miss.
And about reactions of people? Uch. When I tell my mom I find it hard to go out to a restaurant. All she says is; “You just have to try it.”
Yet, she doesn’t want to understand that with “Just try it.” I can get really sick. I’m a control freak, but also scared for being sick again. I want to make sure that the restaurant knows about Gluten Free food.
And when I told her how much I sometimes hate Celiac, she reacted with “Be glad you don’t have a penut allergy.”
Ghee.. Thanks mom.
Sorry for my story being so long and I’m sorry for the writing mistakes. As said; I’m from the Netherlands, so my English isn’t as good as American people :)
#real gluten problem :
when PoC are literally denied testing for gluten allergy, or their confirmed self-tests are laughed off/ignored, merely because someone decided gluten was a whites only allergy. What other food allergy only effects one race, can you name one? I can’t. Yet I’ve personally witnessed people laughed at and dismissed from proper examination for gluten intolerance, just for not being “of European decent.”
This is a serious fucking problem, it’s a weird random “standard” that doctors and GF websites perpetuate for no apparent reason, with no scientific backing.
It’s common knowledge that people are more likely to be allergic to foreign foods than those their ancestors have adapted to eating for centuries, so it should be the case that far MORE non-white people than white people are allergic to gluten. Doctors need to start readily acknowledging this. People need to actively dispel this weird stereotype. This literally is a matter of life and death for some people, seemingly stemming from eurocentric, systematic racism. And it needs to stop. Equal medical consideration needs to start.
Submitted by: Anonymous
growing up i used to get bad stomach pains all the time and started taking a few days of school and my mum thought i was always faking it because an hour later i was fine. then i got to 5th grade and sometimes i wouldnt eat my lunch and other things because i felt bloated and disgusting and my mum had a talk with me because she thought i was starving myself.
then one day i got so sick as school and was shaking, throwing up and had a high fever with sweats, they were going to call the ambulance but i just went homee. i went to the hospital later and they had no idea what was wrong. i then went somewhere else and she said i was celiac.
for a 10 year old girl to hear that devestated me. i didnt want to be different. then i got to yar 7 and i had camp, the guy serving the food called me gluten free girl and i would always get embarrassed. everyone would be ‘jealous’ because i got better food then them (i just got chips and stuff). but as soon as the krispy kream donuts came they werent jealous anymore. i couldnt have any. i HATED being different.
im 16 and still hate having this. and it completely pisses me off when people say “your skinny because you have celiac”
when infact no. most of the substitues like ceral and biscuits have SOOOO much more sugar and things than normal ones. its just because i have a health freak mother and i dont eat a lot.
yea, that is my story :) boring i know.
(it’s not very exciting, but it’s my story)
My name’s Ailbhe, I’m an 18 year old Irish girl and I was diagnosed in 2009.
Before I was diagnosed, I was living in the US. When I was in the 8th grade (aged 14), I suddenly got really sick for a week. I couldn’t eat anything without having the worst stomach cramps I’d ever had and having to run to the bathroom. After 6 days, I was perfectly fine and so I assumed that it was just a bad stomach bug.
Then I started to have more episodes. At first, they were spaced far apart, maybe once every two months. Gradually, they got closer together to the point where I was sick at least once a week. My only real symptoms were stomach cramps and bad diarrhoea, with some nausea from time to time. I went to my GP and she gave me every test she could, bloods, stool sample, abdominal ultrasound, you name it. My coeliac bloods came back borderline negative so she told me not to worry about it, despite my family history of the disease. She diagnosed me with GERD and I started taking Zantac tablets every day.
At first, the Zantac tablets worked quite well. I’d have a few weeks with no episodes before I’d suddenly get sick again. Every time I got sick, we upped my dosage until I was taking 3 times the recommended daily amount. I was missing weeks of school at the time and frequently sat up all night, too sick to even think of sleeping and unable to lie down because it made it worse. I began to actually fear the food I was eating, knowing that it would make me sick. Some days, all I ate was a bowl of plain boiled rice because it seemed to be all that I could keep. At this point, we told my GP that there had to be something else.
She then diagnosed me with IBS, saying that the stress of high school and moving to the US from Ireland had probably triggered it. She got me an appointment with a gastroenterologist at the local hospital so that I could talk to him about what to do. I met with him and confided my fears that it was in fact coeliac disease. He said that it was a possibility but given the fact that my bloods were borderline negative and my age, he didn’t want to scope me. He simply told me to avoid sugar, soda, fatty foods, stress (any of the common triggers for IBS) and to come back if I was still having my symptoms in 6 months.
Luckily at this point I moved back to Ireland from the US. Now aged 16, I’d been suffering with symptoms for a year and a half. The second I told my Irish GP what I had been dealing with, he immediately sent me to a gastroenterologist to get scoped. Within a month, I had my diagnosis: coeliac disease.
I threw myself into my gluten free diet, determined to finally get healthy again. It took about 6 months before I started feeling better, but now I’m on top of the world. I still get sick occasionally due to slight IBS, but my coeliac disease is completely under control, with all of nutrient levels perfectly right, and my coeliac bloods in the healthy range.
Being diagnosed definitely changed my life. On the one hand, I’m much healthier now. I still wish that I wasn’t coeliac though - it’s hard to go out with friends when you can’t eat anything. Luckily, Ireland’s a great country to be coeliac in and it gets better all the time. The support I’ve gotten both at home with my family and online has been absolutely crucial for me in staying positive. It might suck, but I guess coeliac’s one thing that can link all of us together :)