Where oh where does the time go? It’s been many months since I posted a reader’s celiac rant.
I know somebody who has a friend with celiac disease. But they still eat gluten sometimes because “she must not have it as bad as you do.” Arghhh!
Do any of you have this kind of “friend”? The one who is gluten-free but not only does he/she do it half-ass, but they question why you take it so seriously?
Even if you do not, I think we can all relate this person’s frustrations.
This is a serious rant. Read on my friends.
Gluten Dude, I just found your website. I couldn’t NOT read it. It’s amazing. And then I found the celiac rant section. Extra amazing. If you’re up for more rants, here’s mine.
I found out I was Celiac during Spring Break of my freshmen year of college. Yeah. It blew. It’s taken me a long time to start to come to terms with the GF way of being but little by little I’m taking control of my health and making positive decisions.
I go to a very small college (700 students) where everybody knows everybody. There is only one other person on campus who (pretends) to know what my life is like. She has “gluten intolerance” and unfortunately we share the same group of friends. Now don’t get me wrong; I have a friend who has a real gluten intolerance and suffers severe headaches and acid reflux upon eating gluten.
The problem with this girl is that she makes me look like a high maintenance attention seeker when she’s the delusional bitch.
When I first met her and we discovered that we had similar diets, she could “talk the talk” like somebody who knew their way around gluten and I thought it was a legitimate intolerance. Low and behold, a few months later I was on a long road trip with some friends and we stopped at her place for a night to crash.
Me, being under the impression that she knew what she was doing, let her feed me. She assured me that it was all gluten free and I was a complete idiot and trusted her. I spent the rest of the road trip in pain with a frequent need for bathroom stops – basically a perfectly awesome vacation gone to pot – literally.
I confronted her about it later and she assured me that everything was GF (I had already Googled some of the things the day after and knew for a fact that they were not.)
I learned two things that night: first, that her intolerance was fake; and second, to take responsibility for my own health.
But it doesn’t stop there. Now that she’s infiltrated my friend group even further, she frequently appears at things like dinner outings. When we order, she simply states that she needs her meal gluten-free where as I have to talk to the manager, and send questions to the chef, and double check everything while diligently keeping the appetizer bread crumbs away from my silverware.
She simply “just isn’t that sensitive”.
Once when (at a restaurant that I trust) I ordered a flavored ice tea that I was assured was gluten-free when it, in fact, was not and half way through the meal could barely hold back tears due to the amount of pain I felt. She made a comment about how “it couldn’t be the gluten in the drink because the waiter said it was GF” and that I “was probably just reacting to the high amount of sugar” and that “I should avoid that in the future because the body just isn’t designed to take in such large amounts of carbohydrates all at once”.
It took every ounce of sanity left to not shove her gluten-free meal down her throat til she choked while screaming “now you know what gluten feels like bitch”.
Last but not least, when I was not allowed to be exempt for the school required meal plan and was forced to eat at the school cafeteria (whose GF options are Udi’s sandwich bread and a salad bar), she would eat all the gluten free cookies even though she’d be perfectly fine eating normal people cookies.
She doesn’t have to take a book to the grocery store to tell her what might be safe to eat.
She doesn’t have to take multivitamins in hopes that when she’s 30 she might still have some bone density.
She doesn’t have read every single label ever.
She doesn’t have to try and explain to her family and friends why “just one bite” is not going to happen.
She didn’t have to give up her favorite foods.
She doesn’t have to tell her boyfriend “thanks for making that honey, but I actually still can’t eat it because you used a shared jar of peanut butter”.
She doesn’t have to eat all the damn cookies.
So to sum up my rant, she’s the one who wants attention and special treatment and I’m the one who has to suffer more than I already do because she makes people think that Celiac is another term for needy and not a medical condition that should be taken seriously.
Dude Note: In describing her friend, you may even say that “She’s the One”. Yes…I will use any opportunity to integrate Springsteen into my blog. Holy crap is the below video incredible.
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??
65 thoughts on “Celiac Rant: My Gluten-Free Friend is Making Me Sick”
Oh boy, this is a tough one. I have a similar experience; my “friend” from high school, let´s call him George, was diagnosed with Celiac disease and type 1 diabetes when he was around 10 years old.
George and I were in the same class in high school and shared a friend group. The last semester of high school (two years ago), I was in the process of being diagnosed with CD. My health was extremely bad, but nobody around me took it seriously and thought I was being dramatic. George and I talked about my being in the middle of probably getting diagnosed with CD, I asked him some questions since I knew he had CD. He was the kind of Celiac that pretty much completely ignored the fact that he had Celiac. He ate regular bagels every school lunch, good old gluten-filled spaghetti and pancakes because the gluten free diet was “inconvenient”. “But don´t you get sick a lot?” I asked him. “Not really, sometimes a little I guess” was his answer. Almost his entire family, including his dad and many of his siblings also had Celiac!!!
His ignoring of his illness made it very difficult for me to explain to our friends why I had to eat gluten free while he seemed to be fine without it. He hurt my chances of being respected in our friend group.
My theory on him is that he was in a “honeymoon phase” of Celiac Disease that some teens with Celiac go through. This honeymoon phase makes them “tolerate” gluten, with no harm seemingly done. Of course, they still have CD and harm is still being done to their intestines. That, plus extreme anger at his body for having diabetes and Celiac probably made him ignore his illness. What a sad story… I am worried for his future health, and the health of his family members. He is one of those Celiacs that makes the life of other Celiacs worse.
Not saying he had it or not but it affects different people in different ways. You should know this. Also, the way you view your friends as potentially hurting your ‘credibility’ warrants great concern for how you view the world. What is he doing does nothing to other Celiacs like myself. Stop with that nonsense.
Not saying he had it or not but it affects different people in different ways. You should know this. Also, the way you view your friends as potentially hurting your ‘credibility’ warrants great concern for how you view the world. What he is doing does nothing to other Celiacs like ourselves. Stop with that nonsense.
Oh – those people really make me mad. I also have one friend in my life who dabbles in GF. She’ll send me texts like “did great at GF today, only had one slice of bread.” It makes me insane….and incredibly thankful she lives in a different state. If she lived near me I would go bat shit crazy on her. As it is now, I just shake my head and hit the delete button on my phone.
I have a friend who has a “gluten sensitivity.” For my birthday last year, she brought me a GF cupcake. How sweet, right? Until she looks at the two cupcakes in the plastic holder thing and says “Oh, the gluten free one is the one with white frosting.” I counted to ten and explained that I couldn’t eat the GF cupcake because sadly, it was not GF (this reminds me of the cupcake amid the glutey things from a previous article) since the other cupcake was breathing all over the now not GF one.
BTW, I don’t know how I haven’t found this website before but it’s officially my new favorite website!! It really lets me know my frustration is shared by others and that I am not alone. Yes, ten years after my diagnosis I have yet to be friends with another Celiac!
I have a friend who plays at being gluten intolerant. Every time she tries to talk to me about gluten free muffins or flour mixes I seriously want to gouge my eyes out with a dirty spork. I don’t get how she cannot see that she ‘illness’ and mine are not even on the same playing field. *sigh*
All of my siblings are gluten-sensitive, not celiac. In defense of them, they’ve always been very careful of me, even though they can eat things I can’t–and my sister bakes a lot.
I think this falls under the heading of, “We all have friends who are jerks; that doesn’t mean we should let them feed us.”
Also, incidentally, celiac doesn’t have to be the death knell of bone density. Exercise helps. I got a bone scan at 32, after being really sick for years. The scan that said my spinal bone density was 14% better than average–probably because by the time I got the scan, I’d had years of bicycle-only transportation, weightlifting and three years of daily Pilates.
Whatever my issue is, I am gluten intolerant, not dx coeliac and therefore avoid gluten. On accidental exposure I get very ill. Not worth it. I understand these rants. It can be very frustrating if one feels not taken seriously. It’s good people can just vent about it.
I know a girl that says she has the Celiac Disease gene so she has to stay away from gluten, but every time I see her she is eating something with gluten in it..When I confront her she is like well it doesn’t make me sick. Then, she got pregnant and said her doctor told her to get gluten because the baby needed it. She even tells people she has to counf how much gltuen she has a day and cannot go over a some amount kinda like people count calories. These people kill me.
She “measures” how much gluten she has in a day?!?! That’s quite possibly one of the stupidest things I’ve heard…and if she was told that by a doctor, he/she needs to lose their license.
“now you know what gluten feels like bitch”… Brilliant!
I can so relate to this rant. II have never been officially diagnosed with Celiac but there is no doubt, plus my symptoms are immediate. If I eat gluten, my lips swell and get blisters inside my mouth and I cannot breathe fully for about 24 hours.
I have friends who are gluten free who will eat the frosting off the cake or take the bread off the sandwich and eat the inside and I just look at them in horror. Sometimes I get the eye roll and the “I would die if I had to give up all gluten”. Hmmm, yes, but you will definitely not be well while you won’t.
At this point, I refuse to eat food at anyone else’s house, and usually I am super careful about restaurants. It’s ok if people want to think I am a hypochondriac. At least I can breathe.
EEP! Swelling and difficulty breathing sounds like an allergy… possibly a life-threatening one. Please be careful, and please talk with your doctor about this.
Debbie, I agree with Ellen. Please be sure to check with your doctor and see if you have an allergy to wheat or other gluten-containing grain. With immediate symptoms like that you may need to carry an epipen.
I have a similar issue with a new manager at work. She tells me she “understands” about being careful because she is a vegetarian. (Like she would know if someone grilled her veggies on the same grill at a hamburger.) She means well, but if I hear her compare being a vegetarian with having Celiac once more I may throw a hissy fit.
Dee I would GUARANTEE they are grilling her veggie whatever where they just had meat. Chefs hate vegans & bitchy vegetarians 10 times more than they hate us!! Karmas a bitch 🙂
But this highlights the issue: people think going GF is a lifestyle choice and not a matter of medicine.
Re: Claudette…I don’t mean to come across as being rude but it’s not “A Matter of Medicine” that’s the primary problem…Doctors are trained to treat symptoms with Medicine…as one Gastro told me she’s Allopathic not Naturopathic…This is why it’s so frustrating for so many trying to figure out what is wrong with them. It took me years of fighting with multiple doctors to figure out what the hell was wrong with me….The ignorance of those not suffering is astonishing…..I completely sympathize with all of you who have “THAT FRIEND” or in my case MY ENTIRE FAMILY…I have been humiliated, told I did it to myself (the oh so ignorant uneducated step mother) and been made to feel like a complete and utter pain in everyone’s ass…it hurts…but I do have to say more people (especially the ones who tortured me) have found they have similar problems…oh how satisfying that was..I know I know not nice but it was about time someone around me “GOT IT”. So to those who say they have it and may not or those who say they are gluten free and still eat bread “shove it” unless you have spent hours in the bathroom, had every function in your body shut down, slept for days or been so down you didn’t care whether you woke up the next morning you have no idea what it is really like to have this Debilitating Disease.
Nope, no gluten reaction is that, that is an allergic reaction: you are describing anaphylaxis, call 911, dont piss about.
retard!!!! you had a reaction to a food product. Celiac is only determined by a doctor not in your head!!!
I think you have an allergy to gluten…not celiac per say
I’m lucky my main friends are all really cool with my gf needs. I usually bring my own food, but if they’re cooking for me they’ll have me check ingredients as they use them. They knew about my skin problems before I found out it was dh so they get that it’s real and serious. I really think that a visible rash is easier to ‘get’ than other internal reactions, ya know? Like they can see it so it’s more tangible for outsiders.
I do know a couple people who are paleo; one is gluten sensitive and one feels better eating this way, and they’re both cool about Celiac and know it’s more serious. The other is a bit newer, and I feel is doing it because others are/to lose weight… I don’t know how serious she is, but she compared herself to me once… she got on my bad list after that. I don’t care if people eat this way to feel better but don’t compare. Also, don’t use the term “gluten-free” if that’s not how you’re eating. Or at least admit that you’re cheating now because it’s not a medical condition.
It’s like somebody telling a diabetic they’re worried about their sugar intake as they eat a donut… it’s a jerk move…
Just be honest, ya know?
Lord, this chick sounds like one of those people who says they can have “gluten holidays” too.
::%&*%%$&$*&*())&*(%^$&^:: (didn’t know if I could curse up a blue streak here, symbols will have to suffice 😉 )
Even though I’m not super sensitive to gluten (I’m fine with anything under the 20 ppm mark), I’ve made it my mission to act as if it is so and educate everyone else on why we should be doing so too. It’s impossible for people to take this seriously as a medical treatment when there are SO many people who just decide today they’re going gluten free and maybe tomorrow gluten is fine again. And then back to gluten free because they like those $10 cupcakes at this hip new restaurant.
::grumbles:: Happy Monday, all!
My high school friends all got together a few years ago, and I knew one of them had been diagnosed with Celiac as well, and I was excited to have someone to share my woes…. unfortunately she told our group her Celiac “went away” and “wasn’t that serious”… so then they all believed that I will heal one day and didn’t have to eat this way the rest of my life.
I had to use something like this as a teaching opportunity with president of board I’m on. Last year we had party at landry’s seafood (irony is its a fish club), my meal was cooked fresh last thing, served seperate & only “issue” was i got no starch of any kind because they were being careful…WIN!! Everyone else wanted to know “how I got the good meal” & such personal service. It was nice being the one eating something others were jealous of for a change.
Fast forward to yesterday…president wants pot luck “because its so much more personal”. She apparently used to have roommate with MS that was gluten free & she did all the cooking for this person. “You know they have gluten free bread & cookies now ,i can get those for you to eat”. My reply was a flat, “have you ever tasted some of that crap”? Her reply was “I know you can eat turkey & we can have a big roast & I will personally stir-fry some vegetables for you” . Turkey has flour in brining solution, roast especially the cook on bag type has flour in it & stir fry has soy sauce that is boiled wheat. There was a long pause. “You mean they put flour in ALL THAT”? Yep! Now do you understand why my vote is for the uber rare restaurant that went the extra mile?
Will see how it plays out. Its so hard explaining “how i can be fat but celiac” & people say this to my face! Especially when body is almost solid muscle except stomach & innertube region that rapidly expand & contract depending on what eat.
Is it any wonder that going out & socializing with food rarely happen with me.
Great rant post, every celiac has a friend/family member who just irritates the hell out of you. Personally my favorite question has been, “Are you better now?” Grrrrrrr. NO! I am not better!!! It just doesn’t go away. You all been hanging with puff the magic dragon???
“I don’t know what gluten is, but apparently it is delicious….”
There’s a new “trend” that people who want to eat gluten free because they think it’s better for them tell people they’re “gluten intolerant” so that they don’t look “trendy.” I can count the number of people that I trust to cook for me on one hand – and all of those people are in the “I have celiac” camp and who explicitly understand and can state what that means to them. I don’t trust the “gluten intolerant” precisely because they don’t have to be as careful. So if the person doesn’t say they don’t have celiac, too… I act with caution and suspicion. Now some people with NCGI can be trusted… but until I’ve gotten to know them and their kitchens, I STAY AWAY. I’ve learned the hard way that there is NO CHEATING. And as for a “gluten holiday”… ARE YOU EFFING NUTS????
We need to re-define “gluten holiday” to what it really is…the 2-3 days you must take off work & other activities to stay near a toilet, moan in agony & lay doubled over PRAYING that the agonizing fart, is actually a fart…BECAUSE SOME MORON THOUGHT A LITTLE FLOUR WAS OK!
Being kind to the EPA & containing explosive diahrrea to your own home so they are not running around seeking the source of the smell.
Staying out of public & “blessing” only your own family with gluten rage, memory loss & the results of the agonizing bone pain.
Yep its a vacation you should have to pay extra for :@
The saddest part of that is: if you do NOT have CD, your bones NEED gluten to maintain density! Funny thing, that. NOt a lot of gluten, but not NONE.
Dude, I’m okay with any opportunity you take to incorporate The Boss into your blog!
As for the rant, yep. We all know at least one of those “friends”.
Sigh. I have this problem…with my in-laws!! I diagnosed my MIL’s gluten intolerance, and my husband’s. They have type 1 diabetes in the family, thyroid issues, etc. — all celiac gene related. My MIL was so grateful to get her digestive issues under control, but she still “cheats” once a week at her favorite italian restaurant (which serves GF pasta) by eating a stupid little breadstick!!! WHY?!?!? It’s not even that tasty I’m sure! Then my FIL tries to cook for me and uses canned soup broth with gluten clearly on the label, saying “common’, that little bit won’t hurt you.” Why, becuase you feed it to your wife?? Her health issues continue to mount, and she refuses to consider her continuous eating of gluten plays any part. I give up.
Whoever you are, you are wonderful ranter. Your rant gets an A+++ from me. Your narrative jumped off the page and I was saying “OH YEAAH! TELL IT LIKE IT IS!!!” And that was before I got to Bruce. I can COMPLETELY RELATE TO THIS!!!! Although I don’t know anyone who thinks they are a Gluten Intolerant and follows a half ass GF diet with no health reactions whatsoever while scarfing down all the available GF cookies, I do endure comments on an ongoing periodic basis from friends and family, who observe me at a party or gathering where there is food (I say nothing, but THEY do!), and exclaim, in disbelief, “Are you really THAT sensitive?!”
It’s been over three years since I learned I was Gluten Intolerant, and so over three years since I’ve told these people I was Gluten Intolerant, and these are people I adore and love, I mean long time friends who seem unable or unwilling to get it through their thick skulls the concept of how a microscopic amount of gluten can make me terribly sick. Hidden gluten, even more than wheat flour, might as well be POISON to me.
Some of my friends just don’t get it, even as I look a them with all their various potentially gluten-related health problems and think maybe they could be Gluten-Intolerant or have Celiac. Far be it from me to suggest their health problems might improve on a GF diet. Far be it from me to tell them that most people with Gluten Intolerance or Celiac do not have G.I. symptoms and those people are among the Vast Undiagnosed.
My family has mostly come around to being supportive, with one even doing their own research and then coming back to me and saying, “Wow! I had no idea!” which makes me feel somewhere between loved and validated and put off because they didn’t believe me in the first place. But there are some who live out of state who I know secretly believe that at least some of my illness after being glutened is “all in my head,” “because I expected it to happen.” Really?????
A concept most of my friends can’t seem to get: “hidden gluten.” It’s as if I’m imagining it, right? It’s hidden after all, it must live in my imagination, like a monster under my bed.
When I mention hidden gluten to waitstaff at restaurants they look at me like I have four eyes. I am so sick of it. People do NOT seem to understand that Gluten Intolerance is a separate illness from Celiac, but one that can be just as devastating in the long run if gluten is not avoided (i.e. Gluten Ataxia).
I like to educate people wherever I go, whenever I can, but I feel like I’m wasting my time on most people. I think that when I go to a restaurant, which is very rarely, I will stop trying to explain hidden gluten, and just lie and say I have Celiac which is something everyone seems to have heard about and which seems to have greater respect (believe it or not). Put the word “gluten” into your health condition and people’s eyes glaze over. I think I’d better add “extreme food allergies” too, even though that’s a lie. I’ll combine them and come up with an effective script, and announce to the waiter/waitress/manager of a restaurant the follow lie, “I have Celiac disease and severe allergic reactions to not just wheat products but all processed food, and I will get deathly ill within minutes of eating the contaminants and have to be taken away in an ambulance. So please take all necessary precautions.” And I’ll make sure I’m dining with someone who DOES understand that just a little bit will make me sick for a duration of at least 10 days to 2 weeks.
I so agree with all of this.
Right after my diagnosis, I went for dinner with 2 of my longtime friends. One is Diabetic and one is Celiac. I hadn’t seen either for a long time, and I was counting on learning things from the friend with Celiac.
So, I took my miserably sick seven month pregnant self out to meet the girls for dinner. We went to a higher end restaurant that knows how to deal with GF and can adapt. (One with a chef, not just a cook)
I was anxious to hear Pam order, how she dealt with the whole GF deal. (All my knowledge came from a book and a little on line, but 5 years ago there wasn’t much.)
She ordered GF, the waitress also helped me with my choice – steak NOT coated, GF veggies.
Then they brought a basket of bread to the table. And Pam ate 2 slices! I asked about it and she said, oh I will pay for it tonight but it’s so good.
She also had dessert.
Oh. She did tell me not not do that.
So, that’s when I learned not to learn from others.
I did have a good meal and I didn’t get sick. But the only learning about Celiac Disease and restaurants came from the server.
And I also learned that there will always be people who don’t take it seriously. They are the ones who seem be to heard the most.
I have to ask a ton of questions and know inside and out where ALL possible places gluten can be. I am my own advocate and now my son’s. the “Pam”s of the world will always be there, but so will we. We need to be aware and to speak up when needed.
We will not go away because we can not.
I have not ever and never plan to be “trendy”. Unless getting violently ill from a spec of gluten is trendy. Then I should be on the cover. ;p
So be the annoying person questioning every single thing in that meal. Unless they would prefer you occupy the bathroom for the next 3 days. It will sink in eventually.
This rant writer did a great job and I can certainly relate. I was diagnosed with a wheat allergy (and stopped eating wheat) so I was never diagnosed with CD. But I endured so much pain for years before that diagnosis, I take it very seriously.
As payment for taking it seriously, I’ve had medical professionals and students tell me that I can’t keep it up since I went cold turkey (2 years ago, still going). I have a SIL who cheats and not even for anything good IMO. I have relatives who come to my house and do ridiculous things that make me feel like I can’t eat. In. My. House. (To be fair, my DH is not g/f, so this is not a g/f house, but we have our ways of keeping me safe. When it’s just us.)
I think it is human nature that people want to relate to your problems, so I try to be forgiving…but it can be super annoying. I have MS (but I look fine!) and one of my daily (invisible) symptoms is fatigue. I can’t even tell you how many “caring” people have told me they understand because they get tired too. WTF. Shut up. So MS prepared me for the stupidity of people dealing with my food allergies.
This may sound crazy but there are many people who have been diagnosed with MS who have cut all grains out (obviously all gluten) and gone into remission…I think we’re onto the fact that most auto-immune benefits from a completely gluten/grain free diet.
This is why I am really, really really careful when I eat out or when anyone prepares gluten free food for me. I have not been diagnosed with celiac disease, just gluten intolerance due to the fact that the gluten challenge (my three day one) nearly killed me. My parents and I didn’t think a positive antibody test was worth it.
I unfortunately can deal with cross contamination. No gluten obviously, but if it’s cooked in the same pot I don’t have GI symptoms like I do when I eat something that has gluten in it. At restaurants and in public I always, always stress no cross contamination. I do this because I know that there are those out there (most people!) who do get sick from it. It’s hard because I have to say that I’m just gluten intolerant, no official diagnosis, but I want to be treated as a celiac so slipups (like cross contamination, etc.) don’t happen and make someone sick. The last thing a restaurant needs is to relax their gluten free standards on my account.
What a great rant ! it reminds me of people i know that say similar type things. This is why i really don’t tell most people about my celiac. even most of my family has no idea. they just think i’m on a crazy diet. i feel like its a private health matter and its up to me who i tell. and like some of you sometimes i just dont FEEL like being the CD Ambassador or educating people at nauseum. I will share 2 funny things that this reminded me of. 1. i called a cosmetics company and asked if a lipstick contained gluten. i told her what gluten was. she put me on hold then came back and said “it contains sunflower extract – is that ok?” I said why wouldn’t it be…she said well its a FLOUR. ???? Really ????
and 2. i was seeing a therapist when i found out i had CD and was happy to be able to talk to her about all my anger feelings and life changes due to my new disease. I was explaining CD to her a bit and my challenges and she seemed to understand….UNTIL i said something about GF pasta and she said that since pasta was boiled wouldn’t the boiling water kill the gluten. SIGH. at this point i try to just laugh off some of this and keep in mind that I’ve probably said something ignorant to someone at some point when they tried to explain their health situation.
EXACTLY. So many times people have to tell me that I’m just looking for attention being Celiac.
Very cool website!! Although I do not have celiac, I am very sensitive to gluten (and many other things). Every time I am in contact with gluten I get all itchy, I can’t even sleep. This article is very interesting because gluten free diets are on trend right now. If someone wants to be GF, it has to be done at 100%! You’re either GF or not.
Cheers from Canada!
Oh, I LOVE this website! Thank you, all of you. Im truly not alone in this. I become violently ill from any gluten, dairy, processed or artificial sugars..and, most recently, from chocolate and gluten-FREE,dairy-free, and organically sweetened bisquits or pizza crust. Sometimes I am frustrated to tears shopping for foods with ALL of these intolerances covered. I am also vegetarian by choice. Does anyone out there know why one would still get sick despite eliminating all of these things???
Hi Vanessa! When I took an allergy/intolerance test, many things indicated that I have problems with chemicals. For example, I can do sea salt but not regular salt, I can drink coffee and tea but no the decaffeinated ones. Maybe you should check with your doctor. Hope you get better!
Thanks, Steph! I really appreciate your input!
I’ve had the same problems in the past. I went to a healer (I was so far through that I would have tried anything) She explaained that because of my CD my whole system was in a bad way and that my immune system was so far gone that I was getting everything that came along, She tested me for things I shouldn’t eat and it ended up a very very long list. Then and this was the most important thing she told me that it was really important to make sure my diet was varied (ha ha when there are so many things you can’t eat) I did this for about 4-5 weeks never eating the same food two days in a row and I can now tolerate some of the other foods that I couldn’t before. I do make sure thought that if I’ve been glutened that I go back to the diet for a week or so again.I hope I’ve been a little bit of a help with this answer..
Oh my gosh I absolutely LOVE reading your rants! I too keep a gluten free blog and often post my rants as well! I’m glad to know there are other people that share the same frustrations. Don’t you just hate peoples ignorance and excuses???
I have quit gluten and gone cold turkey for 3 months I ‘cheated’ last Friday and had a Naam bread I suffered awfully, cold sweats terrible swollen stomach, diareah and headaches I was ill for 4 days.. I think that I suffer from GI and never even knew it, I don’t feel like this is a fad or fashionable, intolerance can be extremely painful and complex as you are less likely to be as strict however at times the acute symptoms can be bad 2. I have suffered migraines since I was a child and IBS and since quitting gluten I have not suffered a single migraine or IBS symptom. Celiac disease is a terrible condition but I think that as a true celiac you should always take responsibility for your own health and never ever leave it in the hands if someone who doesn’t realise the potential harm they could cause. If I was to eat out I would tell them i was celiac a lie but it’s more understood and less likely to land me in the bathroom all night this would not be at all fobbing celiac disease off or me not understanding how dangerous the condition could be it would purely be to ensure my food was safe and not going to cause me adverse reactions, everyone’s intolerance varies and the best way to avoid any symptoms it to stick to the diet and ensure those feeding you do 2 !
I just found your blog. I know I don’t have Celiac’s disease. Well.. I don’t know. I suppose it really doesn’t matter what you call it.
I’m an 18 year old guy, senior in high school.
I’ve had constant brain fog for as long as I can remember, its gotten to the point where it caused me to get in a car accident and I can’t afford to have it fixed but I also don’t feel like I can drive till I go gluten free. More recently though I get stomach bloating right after school lunch, and and gassiness later on, which relieves it. (I know, disgusting). Last summer however I noticed that if I eat gluten and then exercise I get the throwing up in your mouth thing. I tried giving up gluten, but only for a day or so until I give up. Just like everything else in my life. My sister has a sensitivity to it also, she’s been gluten-free for years now.
Its mainly the brain fog that I can’t stand. I can’t focus and keep forgetting what I’m doing. I just sit in a chair and stare at something for hours, and the hours pass like minutes. Has anyone else had this thing where you’re really zoned out and just stare at something, its not something interesting usually, but you just stare and just don’t feel like moving your eyes from it. And then if you stare long enough everything else goes black and yeah.
I have a middle school level of math. I’m failing my English class right now because I literally forget to do essays. I did nothing yesterday, I stared at the wall and my mind went blank and the hours passed like minutes until it was night time.
I don’t know what to do right now because no one at my stupid hick school would understand. I’m already insecure about the acne all over my face.
I never feel like I have any energy, I can’t sleep as good as I used to and ugh. I joined drumline for a few days but had to quit cause I keep forgetting what I’m doing in the middle of practicing, so the instructor got really frustrated with me, and I just couldn’t take it. Its really really hard for me to focus.
I had more energy in freshman year, I remember because in gym I actually liked running. Now there’s no way you could get the to run. i feel like all of my symptoms have gotten worse.
I hate my life. Help. Sorry for writing a whole sob story.
Its going to take me like a minute to do the security question, its 15+7. I feel like I’m mentally disabled and have to try my hardest to do what comes naturally to everyone else.
Can I ask if you were ever tested for celiac? because honestly, kiddo
you have a lot of symptoms of gluten intolerance. That brain fog thing is what I call Gluten Head and before my diagnosis, I had it pretty bad.
Get tested right away.
Even if it is negative, please go GF for longer than a few days. Ask your sister for help with the meal planning. And we can help! Get some probiotics. Take one every day. Eat clean and healthy foods and drink a lot of water, and soon, that gluten head will resolve.
You should not have to live this way, Ray.
Call on me if I can help further.
I want you to feel better!
Thank you, I didn’t expect to get a response so soon. I haven’t been tested. I’d like to be tested before going gluten-free. Sorry about getting off-topic on this blog post, I was reading all the comments and forgot what the blog post was about until I had wrote quite a bit. I’m currently writing an email to a doctor that my family has gone to in the past, to ask him if he can test for Celiac Disease. However, the intro animation on his website advertising “Child Vaccinations” speaks volumes about his knowledge about living naturally. However I’m going to ask anyway. If he doesn’t, I WILL find a doctor that will test, and I won’t stop searching till I get a positive result. I won’t listen to their bullshit. I know how stupid doctors can be. I will go gluten free, but I want to be diagnosed. I want to be able to say “I was diagnosed with…” instead of “I think I have…” because otherwise, I feel like there’s no chance of anyone respecting it.
I forgot to respond to what you said about probiotics. Well, I have probiotics, and my mom even gave me my own bottle to take. Thank heavens my family is supportive, I’ve read about some pretty bad situations on here.
The problem is though, I forget. My mom bought me this natural pill called, Mind Care, which is natural with herbs, etc. etc. but the problem is I forget to take them. Pretty ironic, I know, but I don’t feel anything different when I take them. In fact I feel like I never notice any difference with them. Maybe I’m just getting frustrated, I don’t know. I’ve had nightmares for the past two nights, I never get nightmares. They’re ones where I’m not in control of my life. I had to miss the first half of school yesterday and I missed school completely yesterday. I felt like I was going insane last night. It’s better today though, but I dread going back to school tomorrow, and eating the school lunch, getting really bad bloating, and then riding the bumpy bus home in pain, because my car is broken. And then coming home and having gas all the rest of the day. I disgust myself. I try to pay attention in class, but I just zone out and start day dreaming.
Right now I have constant stomach pain since yesterday, I don’t know what to do. I never exercise and usually sit on the computer all day, I feel pathetic, and lazy. I call myself lazy all the time, and lots and lots in public. I tell my friends I’m too lazy to do things when really I just, I don’t know how to explain it, I zone out. Gluten Head, like you said. I would exercise right now, but I feel sick. Just abdominal pain and spacing out, I don’t know what triggered it this bad.
Yeah, sorry about writing such long comments, I just. I need to vent somewhere where people will understand me. My family is supportive but doesn’t really understand. Thanks for being here.
Well hell, why are we so concerned with what others eat and why do others need to concern themselves with what we eat. Can’t we just live and let live?
Well I know the answer as much as the next Celiac. No. Apprently not. I’m just as emotional about food as the next person and it’s important to us that others don’t dismiss our “gluten free” (there’s that word again) needs. It flat out sucks when people act like they understand and clearly don’t or worse, just don’t care.
You find out who really likes you or not when you eat with another person. All hidden emotions emerge when they offer you a gluten free cookie that isn’t gluten free, or they eat your gluten free cookie when they don’t have to. I’m sure that every Celiac has experienced this at one time or another. Unfortunately, until there is truth in the media about this disease, we will have to continue to teach everyone we meet and have them look at us in disbelief and pity.
In the end, I’m glad I can finally say I’m happy to be healthy and that’s enough for now. After a lifetime of suffering and to finally be able to thrive, anyone who has a problem with my diet/lifestyle can kiss my a$$ and is no friend of mine.
I know a girl who says “my bowls can’t take wheat” yet eats breakfast cereal like its going out of fashion..a lot of people use “gluten/wheat intolerance ” as an excuse to loose weight but as another said “not seem trendy”
I feel guilty because I’m wheat intolerant I get the whole painful gas thing..running to the toilet ..weird rash on back of my arm thing… But I understand celiac disease is so much more debilitating than what I have because sure every now and then I can have one biscuit and it doesn’t make me as sick as if I had a couple slices of pizza .. Just want to say not everyone with a wheat/gluten intolerance is as insensible to celiacs as others have been!!!
Very little boxed cereal contains wheat, in fact. Except Wheaties/
I have had food allergies, canker sores, stomach issues,migraines, joint pain, and unexplained tiredness my whole life. About 5 years ago I became so ill that my bones literally chipped if I bumped into something. I was so fatigued and just done with life. I would cry to my parents and they always new something was wrong,but nurses and doctors could never explain. I went for blood testing and everything came back negative except my IGA levels. 2 stomach surgeries later I was diagnosed with an auto immune disease that affects more people than we know. Eliminating gluten changed my life. I can move without being in pain!!! My body absorbs so many more nutrients now that I don’t even look at gluten. I’m still going to go to the doctors for more testing, but I can honestly say I have had more good days than bad since eliminating gluten.
ps….i miss nyc pizza with all my heart
I have to admit I am one of those gluten intolerant folks who can’t seem to be gluten free 100 percent. Once I was first diagnosed as gluten intolerant I completely ignored it, I was always tired and bloated but I was also addicted to my bread and pasta. Now that I have been more strict I notice I cannot cheat like I once used to. I have been gluten free for almost 7 months straight and recently tried eating the tiniest bit of gluten, and have gotten very ill both times. It’s clear my body just can’t tolerate it, and it makes me wonder what kind of damage I was doing when my body was ingesting mass amounts daily.
Kara, I hear you. Same here. I have Hashimoto’s, an autoimmune condition, got diagnosed 6 years ago. I was overwhelmed and tired an struggling with it, so when I found out that some people advocate cutting out gluten, soy, cruciferous vegetables to get into remission,I thought no way!
I ate bread and cereal and cakes and pasta and pizza every effing single day! Never feltlike I reacted to this, either. But the condition got worse instead of better, so finally, six months ago, I cut out wheat, then a month later (because already I felt clearer in my head), I cut out all gluten. Worked like a charm, I have even been able to lower my Hashimoto meds.
Then, I went on holiday, two weeks ago, so it was really difficult to find something to eat in restaurant, and I thought: what the hell, it wasn’t so bad then, it won’t be so terrible if I get a little bit of gluten. Boy, was I ever wrong!!!
I spent the next 4 hours in the toilet (couldn’t even leave the restaurant), and my face was swollen for the whole week . I was SO depressed. But then, I realised: this is my body’s natural reaction to gluten. It is actually a really good sign, if the body has the ability to show you when you are being poisoned (and also gets rid of it as fast as possible). I shudder to think, that this was really going on for the last few years, only my body had SO little energy left, it couldn’t even react anymore.
Just let us not poison ourselves any more!
This post made me angry because you sound like a complete bitch… granted, your friend does sound stupid as hell too. I do not have celiac, but am gluten “sensitive”, where if I eat a standard american diet — meaning the key staples that revolve around sandwiches, fried foods and other gluten laden foods, I feel ill. The only way I can explain the way I feel is a mix between having the flu & being hungover and it fucks with my mood. I think the point you are missing is that your friend DOESN’T have celiac so she doesn’t have to avoid gluten at all costs.. just like I do not have to eliminate gluten and over scrutinize all my food. If we knowingly or willingly ingest gluten, it isn’t doing damage to our intestines the way it is to you and other celiac sufferers. It is a choice we make because we physically feel better doing so. I CAN still eat “normal” foods, although very sparingly, and realize that I will feel like complete shit for at least the next 24 hours if i choose to do so.
All of this said, I have a friend who has celiac and realize that when baking her a gluten free cookies for the holidays, I do so BEFORE i bake the normal version for everybody else. I know that if she were to come over and want a piece of g-free toast I cannot put it in my toaster or use the same knife that i just buttered my piece of bread with. I realize that if I pick up a g-free pizza, i must be sure to tell them to not cut it with the cutter use for the regular ones and to provide a wrapped plastic one.
So granted your friend sounds uneducated and ignorant as hell, don’t shrug off the rest of us who choose to avoid gluten for health reasons as well. Celiac disease is not the one and only negative health ramification that gluten causes.
I’m obsessed w this rant section. In reading these rants I feel normal about being perceived as a high maintenance attention seeker, when all I’m trying to be is not a ball of agony. Thank you! I can’t eat out at all, it seems, as even $$$ resort restaurants that claim to be safe get me sick, like just two days ago. The worst thing is that I’m slender, so my bosses and co-workers look at my home prepared gf lunches and say things like, “Well, being celiac is one way to stay slim.” Do they think I’m making it up and wouldn’t rather have food freedom? My bf is great, but my family is only mildly supportive because they seem to think that when I ask if the breadboard they cut the veggies on was scrubbed after the bread was cut, that I’m being a baby.
My husband is a chef and has been more than helpful with my “gluten intolerance” (I have not been “officially diagnosed”…but who are we kidding. Do I really want to subject my self to that much gluten for a test to tell me what I have already figured out on my own??!! Also, having many Dr.’s look at me like I am bat sh*t crazy….and yes, Dr.’s still look at you like you have 15 heads and a tail when you tell them you may have celiac’s or gluten intolerance!!! so stupid!!) Any whooo….My husband says they have like 50 people a day come in the restaurant and say they have a gluten intolerance. Now maybe some having issues but I am willing to bet that most are on a the GF band wagon. That being said, those people are the very reason that when I exclaim to my server that I have a “gluten allergy” that i get so many “yeah right” looks and they don’t take it seriously!!! They don’t realize it’s just as serious as other allergies!!
On another rant my mother was diagnosed with gluten intolerance years ago and could care less. She was the reason I started looking into gluten intolerance for myself because we share similar symptoms. Fast forward to now…I had recent health scare and was sent to hospital for an EKG and blood test (i had a heart arrhythmia, high liver enzymes and electrolytes were extremely low) all due to “hidden gluten” in some of the food I was eating and I found out I also am allergic to lactose….yay! =( My mom really started to take her diet serious after my health scare and I was super excited because she is obese, pre diabetic, high cholesterol, and many more glutened symptoms to name. I knew if she would just stick to the diet her symptoms would start to fade. I talked to her on the phone recently and asked her how her diet was going and she said “oh I’m not doing it anymore. I hate the gluten free food and I don’t have my psoriasis anymore.” Hmmmmmm. I said “well, mom maybe your external symptoms disappeared because you actually followed a strict diet for a while and you know most of the symptoms are internal” she said “yeah you’re right” then promptly changed the topic. I want to scream at the top of my lungs “ARE YOU JUST REALLY THAT STUPID OR DO JUST HAVE A DEATH WISH!!!!!!” I’m really having a hard time coming to grips with her ignorance and negligence with her own body!! How I wish I could do something about it but she honestly could care less and would rather eat a donut and kill herself!
Okay, I completely understand being frustrated by someone who feeds you things that make you sick, even as they assure you that it’s safe to eat. But on the other hand, putting someone down like that simply because they have an intolerance, and not an allergy (celiac is considered an allergy in the medical world, gluten intolerance is entirely different and very real) just isn’t cool. Just because she doesn’t get instant, terrible pain when she accidentally eats something with gluten doesn’t mean she doesn’t feel the effects later on, in a different way, or maybe she just suffered through, thinking that a little stomach ache or a little headache is “just normal”. I know I did, and still do, feel that way. I have a gluten intolerance, and I hate when people do the “just one bite” thing, not because it’s going to kill me, or give me instantaneous pain, but because later when my stomach hurts and I can’t figure out why, it’s the stupid gluten intolerance that went undiagnosed for 18 freaking years. No, it’s not full blown celiac, no, your “contaminated butter” won’t hurt me, no, my cupcake sharing air with your glutenous cupcake doesn’t make me unable to eat it, and it absolutely sucks for those of you who do suffer this deeply, but that doesn’t make my life any easier, either. I mean, I had a freaking food blog. I live in the biggest food city in America. None of my friends even truly know what gluten is, and nobody makes an effort because their food “always tastes better” than mine, so why change? All I’m trying to say is, this chick sounds beyond obnoxious, and considering the severity of your disease it sounds like you need to have a real talk with her about the difference between you and her, but seriously, not in a demeaning way. Not in a “well mine is worse than yours, so…” way. Not to try and make her feel like her issues are small compared to yours, even if they are, because in some way, whether you know it, or see it, or not, she is suffering too. That’s all 🙂
I have gluten intolerance with a family history of celiac disease. Within in minutes of eating a meal with even a tiny amount of gluten I have to rush to the toilet. Cross contamination can cause me to come out in a rash. I have also given up dairy as it gives me severe migraines. Since I have given up gluten my skin is clear, my face is no longer puffy, I don’t spend nights going back and forth the toilet constantly. Our home is gluten free, I replaced all the old pots and pans and utensils and got a new toaster. My husband is convinced I have celiac disease because the doctor put me on an elimination diet before testing for celiac disease. People think I am just doing this as a fad diet, several restaurants that I have asked lots of questions and confirmed things are gluten free have actually had cross contamination issues and some even had gluten in food they claimed was gluten free. I have mostly stopped eating out as it’s just not worth it to be sick. I wouldn’t cheat because it makes me foggy and ill and a friend like that would drive me nuts!
I AM ANGRY! Restaurant owners, IF IT IS NOT CELIAC SAFE THEN IT IS NOT GLUTEN FREE! PLEASE get rid of your stupid &^$# menus if you cannot promise our safety.
I want to rant more, but I am much too angry.
A friend told me when someone gives you a hard time about gluten get a bottle of rat poison put it in their food and tell them come on eat, I am sure nothing will happen to you, come on try it…best advice ever! Everyone assumes that being Celiac sucks because you can’t eat so many foods and be very careful, but honestly I struggle with social occasions or social eating events. I struggle with peoples ignorance. I have friends who never believed me when I was glutened at a restaurant. There is one in particular that it doesn’t matter what I am trying to say, to explain my symptoms to others to vent out or with the intention of educating others about the disease, but she always tells me the reason I feel whatever it is, it’s because of something else, always(like its in my mind) I guess my urticaria, my vomiting, my extreme fatigue my pain near my belly button, my multiple digestive problems and etc…etc…etc…it’s all in my mind. The doctors results must be in my mind too. Actually I produce the results using my paranormal abilities…honestly… Because of people like that, I’m put off food for life, I rather not eat, that having to explain to everyone over and over again about my sickness, trying to justify myself and my desire to be healthy and not die young. I hate being the centre of attention and it’s the first thing I told friends and family, thank you for caring, but please, I you really care, leave me alone! if there is nothing I can eat, I won’t eat. And I want everyone to not say a word about it. I also have to put up with the: how much celiac are you? high, low… whaaaat? How much Celiac are you!? it’s like saying, How much diabetic are you?? Celiac disease has not spectrum like Autism…
So about five months ago I got a bagel from McDonalds and was enjoying my day. Half way through the bagel I had the sharpest pain a little bit below the middle of my ribs. I pushed it away but eventually it became too much to deal with. I told my parents and they told me to sleep it off. I woke up the next day and didn’t feel that same pain but I gnawing pain like I was extremely hungry. It never went away and some days it was too much to handle. I did some research and was certain I had an ulcer but my doctor said it could be my gallbladder so i got an ultra sound and a HIDA scan and they didnt find anything. I waited another month which was yesterday and I got an upper endoscopy to see if I have an ulcer. They said I didn’t and they then mentioned that I may be allergic to gluten and I will get the results next week. I really don’t want to be allergic to gluten but it would explain a lot. My cousin and g-aunt have CD and they both live a frustrating life and after reading the comments and rants in here I really don’t want to be. If I do end up being GF I don’t know how to handle it. Everything I eat has gluten in it and some of my favorite foods do. Plus I don’t want to tell people I know because I don’t think they’ll believe me.
Would you rather have cancer? Cause if you have celiac and don’t go gf, odds increase that you will get cancer. Make the right choice. Please.