In case you haven’t noticed, I like to mix up the positive energy of dealing with celiac with the realities of our lovely disease. Well…I just looked in my inbox and I’ve got about 20 celiac rants waiting to be posted. So with no further ado…let’s rant!
This one comes from a frustrated celiac who writes a letter to her favorite frenemy…celiac disease. I love this idea. If you want to send me a Dear Celiac letter, I can start a new feature on my site.
Anyway…here we go.
First off, I would like to say how glad I am to have found your excellent website. Thank you for telling it like it is, and for not giving us a sugar-coated version of this crappy disease. What I really appreciate is the fact that you brought attention to the great myth of “go on a gluten free diet and you will feel better.” Utter shite (sorry about the language, but needs must).
You said we could rant in this space, and even if nobody reads this, at least I will have spent a productive 30 minutes (instead of pacing the kitchen trying to stop myself from chucking another failed bread out of the window and at the nearest person). So here is my letter to Celiac disease…
Dear Celiac Disease,
I have been the unfortunate bearer of you for 12 years. One might assume that I feel as fit as a fiddle, having had so much time to “get used to you,” but alas I find things as difficult as ever. For some reason that modern medicine cannot decipher, I continue to feel pretty shit most of the time. Yes of course, I am much better than pre-diagnosis, I can actually get off the sofa from time to time, but you have left me with a broken, dysfunctional body.
Before you say, “you must be eating gluten!” I protest. There literally cannot be any gluten getting through my battle armour defences, I am like the gluten police. I don’t eat out at restaurants, I don’t go to friends houses without concocting major pre-eating and food preparation plans. Whenever I walk past the local bakery, I hold my breath until I am well clear of the danger.
But then, of course the doubt that you breed begins to worm its nasty little way in. I recently moved to Turkey with my new husband, and it is truly a wonderful place, but the awareness of gluten is practically nill. So I have become this island of fear and doubt. I buy all my flour from the UK (the motherland) because I just don’t trust anything here. I have to call all the food companies to check that there is no cross-contamination in simple things like rice. The other day my husband brought home some butter he bought in a deli, and I was like “shit there could be gluten on that butter…” And so on.
So my point is, I am very tired. I am tired of not being able to put any weight on because of you, rotten disease that you are. I am tired of people thinking I am anorexic and asking why I never eat anything. I am tired of being scared of every piece of food on my plate. I am tired of going to the doctor and getting told that I must be eating gluten when I know that it cannot be possible. I am tired of all the crap you put me through.
I am tired of this being my past, present and future.
So I say, Dear Celiac Disease. give me a bloody break.
Yours forever,
XXXXX
******
Thanks Mr Dude 🙂
My pleasure. I hope getting it out helped. Sometimes…all we need is a release. And just a quick few words of advice. Don’t let celiac turn you into a hermit crab. Find restaurants that can keep you safe. Enjoy your friends. That’s how you beat celiac. Hang tough. And as Mrs. Dude subtly reminded me this morning…breathe!
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??
Note to who ever made this rant. I too live overseas and struggle with finding GF items and eating out. I started using a packing company in the US called PacMe and I get shipments from them from the U.S. of GF products a few times a year. They provide you with a US shipping address. I order most of my GF food from Amazon US but other places as well and send it to them. They then consolidate all my packages and send to me in Europe for the cheapest possible rate. If I do a large shipment (80 pounds) it costs about 300 USD to ship and it comes in about 5 days. Getting a shipment is like Christmas! Good luck to you.
To the Author,
My story is similar to yours. After almost 9 years I’m still under 90 lbs and feeling lousy. I’ve been diagnosed with adrenal fatigue, chronic fatigue, fibromyalgia, osteoporosis, low thyroid, leaky gut…All of this I believe stems from the inability to absorb the nutrients from food properly because of the damage Celiac has done to my body.
(I don’t eat any grains, dairy, eggs or many other foods because of sensitivities I’ve developed.)
Unfortunately because this disease is believed to be controlled by “JUST eating GF” it will not be taken seriously enough for the mainstream medical community, let alone the general public who don’t differentiate Celiac from Gluten Sensitive or GF Choice. The money hungry food industry believes a liitle gluten isn’t harmful. Until someone in a position of power is stricken with this life altering disease and actually lives with the consequences and is driven to actually begin a realistic education plan for Celiacs and the general public, we have to be our own “food police” and advocates.
Thanks GLUTEN DUDE for beginning the process.
Wow- your story is so much like mine Jacqueline. I haven’t been diagnosed long but am getting worse instead of better. Doctor believes I have fibromyalgia too and I’ve just cut out grains, dairy and eggs because I’m having multiple food sensitivities. I’m also having reactions to foods high in salicylates- this really limits what I can eat. I also have Hashimoto’s.
I’m currently doing the whole 30 diet because I’m desperate to feel well. It’s just hard to do that without eggs and most healthy fruits
I am three months into my “diagnosis” because I had to literally research my symptoms until I concluded on my own what was really happening to me. I had “episodes” over the last decade (I am in my mid fifties) but in the last year, this disease jumped into overdrive. I lost forty pounds in three months because I literally became afraid to eat…. anything. In any given week, I may experience two normal days, because I’m still discovering how hard it is to avoid gluten. Anyway, I am glad I found this website and it’s good to know that others are out there like me.
Glad to read about someone else who can’t do grains. I have DH & I think that is why I can’t tolerate grains. They give me painful rashes primarily on torso. Was dx 8 years ago at 57. Damage significant. I had to jump into caretaking for many years right after dx as my husband was dx with stage 4 cancer right after my dx. He survived 5 1/2 years & passed 2 years ago. The fact that he was on feeding tube actually helped me manage CD. I had been eating GF crap like cookies while caregiving and just was so ill. Took a while to realize all grains were problem though Drs. Have no real explanation. Took me way too long to realize the damage eggs were doing to me. I only eat vegetables, fruits, yogurt, and lean protein. Sardines are a staple. I have good & bad days but apparently I look great which is baffling, I tell everyone it’s my consolation prize, but it’s very challenging. No one ever thinks I’m sick, so I come across as a diva or whatever. I just managed to travel for 2 weeks for family reunion. Never thought I could do it. A dear friend scrubbed her apt down & kept it GF for me. Incredible.
The limitations of such strict diet can be so challenging. Never feeling good, even with all this effort, kinda sucks! I would love to find some humor in this. I would love to find a celiac buddy as its hard to move on as a widow with this disease.
I’m just relieved to read about others who can’t do grains. That’s what really makes it complicated.
Thanks for listening
Linda
Sorry for your loss Linda. Perhaps you can connect with someone in your area on my forum: http://glutendude.com/gluten-free-celiac-forum/
Wishing you the best.
GD
I was diagnosed 15 years ago after being tested ( and often treated unsuccessfully) for everything under the sun. Diagnosed with Asthma, and chronic fatigue. Suffered from migraines from Age 3….went from 3 a year to 3 a week. joint pain, tender stomach, anxiety, etc. Then I Gained 30 1lbs in 3 months! No reason. No diet change. No obvious stress or illness. Dr started looking at Lupus, Lyme, thyroid. Joined weight Watchers and got worse. Sent to ER for ultrasound ( Dr. thinking it was Gallbladder) Found bleeding ulcers. Sent for more tests and finally a wonderful Gastro dr. called me after the endoscopy to tell me I had Celiac Sprue. Didn’t know what it was…but it was something. Started doing research and cut out all Gluten immediately. Migraines went down to 3 a month. Been working on the weight for many years. got down to within 5 lbs of where I wanted to be and ate GF cheerios for breakfast for a week. Gained 9 lbs back!!! Did a colon cleanse a few weeks ago and am on day three of a 3 day Candida cleanse. If you have Celiac and still feel awful…check out Candida. I did the in-depth check list last week. Women scoring over 180 probably have Candida (I had 220). We are more likely to have co-morbid issues such as candida, Arthritis etc due to the immune issue. Not saying you shouldn’t cut out other foods if you know they make you ill….but you might have another reason for feeling tired, bloated, sore, joint pain etc. I am feeling better today than in many, many weeks. hoping this continues. The liquid and veggie cleanse wasn’t easy since I also have hypoglycemia and really NEED to eat every two hours. I drive for my job. Kept cucumber water, fresh fruit, fresh veggies and fresh fruit and Kale smoothies close by. Feeling good. Down a few lbs and not so bloated.
I eat gluten-free mostly by choice, not because I have celiac disease. However, I have heard how much of a struggle it is from several different people in my life, and while I do not suffer from it I do empathize with those who do. I can’t imagine what it’s like. Thank you for sharing this rant.