Celiac Rant: I'm Sick of Celiac Disease!!

sick of having celiac disease

I woke up this morning hoping no nude photos of mine on iCloud were hacked. The photos, all tastefully done I assure you, are for a new site I’m launching. It’s called Gluten Nude.

Ok…moving on.

Watching Mrs. Dude deal with her breast cancer this summer has made me put celiac on the back burner. No matter what I was going through or how I was feeling didn’t seem to matter to me and I started to wonder…”Is celiac that bad?”

But then I think back to my past six years and I realize…yes, it still sucks.

Look, we’ll sadly always find someone who is worse off than us. But that does not minimize what the celiac community goes through at times. I was reminded of this via an email last week from a fellow celiac who reached her boiling point and needed a place to vent.

She also sent me a follow up email that said “After I sent you this I melted down to my hubby for bothering you with it when your family is going through so much!

No need to feel bad and no need to apologize. That’s what I’m here for…to listen and to hopefully help. Just remember my one rule: Vent and then move on. Don’t carry the anger with you.

Anyway…here’s her email. We’ve all been there and most of us will be there at some point again.

I need to rant! I’m sick of celiac disease. I’m done, spent, over it.

* I’m sick of my stomach hurting all the time despite a very strict gluten free diet.

* I’m sick of my hubby triple checking with family members, friends, and restaurants that the food is gf and hasn’t been cross contaminated because I’m too much of a chicken shit to do it myself.

* I’m sick of the attention it puts on me.

* I’m sick of not being able to kiss my husband and children after they’ve eaten gluten.

* I’m sick of having to explain it to people, only to have them think they know more about gluten free than I do.

* I’m sick of having super supportive family members who try really hard to cook gluten free for me but don’t understand and end up glutening me.

* I’m sick of trying to tell people of all the hidden sources of gluten (yes, I know it’s sour cream and you wouldn’t think it would have gluten, but a lot of brands do).

* I’m sick of being sick.

* I’m sick of having the highs of “I got this!!!” And lows of “I can’t do this anymore!!”

* I’m sick of being picked on for my healthy diet by unhealthy people who are unhappy with their lives.

* I’m sick of feeling like a burden.

* I’m sick of people who are “gluten free” or claim to have celiac disease but have never been tested lecture me on my disease only to crack open a Budweiser and drink it in front of me.

* I’m sick of my children asking “is that gluten free mom?” Because they shouldn’t have to worry about it.

* I’m sick of people responding “you’re so lucky to have that, what a great diet! Haha!” after I’ve explained what celiac disease is for the third time that day.

I’m ashamed when I get like this because it’s not that big of a deal. It’s a sickness controlled by diet. I don’t have a terminal diagnosis and I get to live each day!

But it still just frickin’ sucks some days!

I know I’m just having a bad day and it will be better soon. But today I’m tired of being strong.

Definitely a rant for the ages and one I can certainly relate to. We all can’t be strong 24/7. Hang tough. You got this.

And if you are in need of a good laugh, remember it’s GlutenNude.com.

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76 thoughts on “Celiac Rant: I'm Sick of Celiac Disease!!”

  1. I read a lot here…a real lot…on behalf of my 14 year old daughter who was diagnosed almost 1 year ago. Boy, is she a tough cookie! Great student, super athlete, tall, beautiful, strong physically and emotionally – but this, this gets to her. She’s outspoken in everything but dealing with her celiac disease. She always feels she’s a burden – we remind her she’s not! She gets tired of everyone needing to be so careful around her food – we remind her we don’t mind. We are lucky in that we have yet to meet a restaurant server, chef, or manager who has not been wonderful in cooking her a meal she can safely eat. But, I know she has her moments she tries to keep inside when she just wants to cry – we tell her to let it out. This morning I took her to her first day of high school with her brown lunch bag. She’s wondering who might stare at her…everyone buys. There are 3 lunches and most of her friends were not placed in hers. Her response when I ask her to talk about it, “Why should I be upset with this? Look at what others have to go through – look at grandma C.” (My mother who has spent 14+ years in a nursing home due to chronic progressive MS…essentially a slow version of ALS.) I’m going to show this to her so she can see she really is not alone, hoping she’ll recognize her hurt is always okay to feel and let out. Everyone has his/her own “thing”. I’m an observer with these blogs. This is the first I’ve commented but I needed to get a little bit out myself and need to say “thank you” to you, Gluten Dude, and to the posters. You all help more than you know.

  2. Explaining hidden sources of gluten…! Last night my girlfriend was trying to cheer me up and was joking that I can like Dr. House, walking around with my cane, popping tictacs in my mouth, when I told her “guess what tictacs have in them?” Luckily she gets it, but we did get to have a good sigh over “it’s everywhere.” (And honestly I haven’t checked a tictac package in years, so they may no longer contain gluten, but at one point some flavors did. Don’t want to start a rumor if I’m just out of date.)

      1. Yes, Camille….Tic Tacs are perfectly safe so we shot down another Celiac myth. ; )

        I have to say…coming from an entirely point of view…I just don’t get all the anger and frustration. Maybe from someone who has been a Celiac for about a month because, as there is with everything today, there is a learning curve. Maybe kids today learn zero about nutrition and food in school so this makes knowing anything about a medical diet common? I really can”t put my finger on it completely but this is not rocket science, folks. I think I have had a bad day stemming solely from having Celiac about twice in almost 10 years gluten free. It was over before the day was done. I should add that I was one of the worst case scenarios for this disease…..came “oh, so close” to dying and that’s no lie. Maybe I was too busy being grateful that I recovered, over time, and was given a second chance on life….a healthy life where all I had to do was eat strictly gluten free and ditch most of the dairy I was eating. Pretty easy to deal with that, compared to what it could have been and I think sometimes people need to be reminded of that.

        If you really think gluten is in everything, you haven’t done your homework and have been reading the whacko Celiac sites which are becoming annoyingly more common. Not this site, of course, but there are too many with really bad, false information about Celiac and why people believe them and not solid info from reputable Celiac organizations is beyond me. But, then again, too many people would rather follow Kim Kardashian than pay attention to what is going down on the other side of the world.
        I bet the second American who was beheaded by the Muslim fanatics wished all he had to worry about was having Celiac Disease.

        So, excuse me folks if you don’t like my response but it sometimes needs to be said. I have been thinking about Mrs. Dude of late and cannot fathom how someone deals with all she has gone through. To me, these ladies are the real troupers and have reason to bitch and whine a lot but I don’t see that happening as much as I do from Celiac Nation. If you have been diagnosed longer than 3 months…..OK, I’ll make that 6 months and give you all a break……stop whining and pick up and move on. Or….go visit a cancer ward at your local hospital for that ever important attitude adjustment. I can guarantee you will leave a lot more grateful than when you went in, that all you have to deal with is eating very gluten free. Sorry…but it really is that simple.

        1. You know I Iove ya Gemini, but I don’t think it’s just that simple. As I’ve said hundreds of times, my celiac is not your celiac is not somebody else’s celiac.

          I’ve also said plenty of times that yes, there are certainly worse diseases to have. And yes, you can always find somebody worse off than you. Heck, Mrs. Dude was lucky to “only” have her cancer limited to her breasts. She could have had it much worse. It doesn’t minimize what she is going through, nor should it.

          People struggle with celiac; both the physical and social aspects of it. It’s ok that we allow them to vent about it. And like I said, it’s nothing that should be carried around like a lead weight, but releasing your frustrations can be a good thing.

          1. It’s always nice to have a place to vent. I don’t know anyone else with Celiac. I try to put on a happy face at work when I’m dietarily (made that word up) excluded from luncheons but expected to attend anyway while my colleagues feast and I either bring my own lunch or sit there and hope they hurry up with the damned meeting.

            Food is part of our culture — it’s often how we relate to each other. Those of us who can’t participate feel excluded.

            That’s why I vent. 🙂

        2. Gemini, thank you for your comments, I recognize your frustration. But no one can define our struggle for us. ‘An open heart, an open mind – our deepest thoughts are always kind” Love Life – i hope your struggle is respected as well.

        3. “go visit a cancer ward at your local hospital for that ever important attitude adjustment. I can guarantee you will leave a lot more grateful than when you went in, that all you have to deal with is eating very gluten free. ”

          This is called the Fallacy of Relative Privation. Google it and read up about what a vile excuse it is to tell people that their suffering somehow is NOT nearly as bad as something else.

          The problem with Celiac is that it is auto immune. EVERY SINGLE auto immune disorder comes with worse and better times. EVERY ONE.
          It is NOT as simply as “eat gluten free and you are all better”.
          Try being sick with undiagnosed Celiac for 40 years,
          Suffer the starvation, iron deficiency and loss of fat that acts as a buffer for internal organs until they stop working, then come back and say that it is that simple.

          It may be that simple for you. It is NOT that simple for me and for many others.

          But I only starved to the brink of death – literally. It was NOT that it FELT like the brink, NO I was actually in ICU where they had to give me critical treatment BEFORE they could run any testing at all. All JUST from Celiac.

          I still have pain much worse than any cancer patient I met while mom fought her battle with cancer. Every one of them was surprised that so much pain can exist without having something terminal. They were all looking at me as their example for how to live with a chronic illness with no cure AND surprise one even told me she’d rather know that she had a choice to end the chemo and have an end to her pain where as I have no choice and no end in sight. That was an eye opener.
          I pointed out the Fallacy of Relative Privation to her!

          Then there is the social aspect. Every single social event includes food. Even the nicest people just want to “fed me” or suggest that I work my broken body to the brink making enough for “eveyrone” while I get a single serving of only what I made. And they all want me to sit there with a plate on my lap for the entire time while they eat OR get the right to claim that I “never eat at their home”!
          Am I weary? Heck YES! I am beyond weary.

          Then there is family. Hmmm, one would expect that those who watched me slowly starve to the brink of death to have some smattering of compassion for me. NOPE! They eat my food, expect me to cook, bring in gluten and want to eat at places where I can’t go. And they get cross if we go to a friends house and that friend is upset because I bring all my own food and drink.

          How about vacation? There is something to look forward to – RIGHT!
          NO WAY! I have to get a room with a kitchen. There I get to cook and clean and all that without my wonderfully stocked home pantry. That is NOT rest. And if we trust someone in a restaurant, I am playing Russian Roulette.

          How about longevity? Well, let’s see, the chances of me getting cancer because doctors literally ignored me, wrote off my symptoms, and still took my money – well, let’s just forget that one BECAUSE – after all – you KNOW that it is really just easy to eat gluten free and go away and be ignored some more.

          Oh well, thank goodness that the Dude has this place. So when it gets to be way too much for someone like me, there is a safe place to come and just vent where there are others who know and understand.

          1. Thank you Cheryl! You have said this SOOO well. The social isolation… the lack of understanding… the both wanting and DREADING a vacation! I can cope with these things, but it is not fair to say we should not feel frustrated sometimes.

        4. “Gemini” – What a horribly insensitive and ignorant comment. My husband is a diagnosed celiac and struggles with severe stomach pain almost everyday despite a strict gluten free diet. Your experience is much different than many people struggling with the terrible side effects of this disease. Next time you want to share your experience I’d strongly suggest avoiding your distasteful judgement, asshole.

  3. “*I’m sick of feeling like a burden.”

    Yeah. That’s the one right there. And my friends and family are so incredibly supportive.

    Now I feel like a bit of jerk because I have to crackdown on my brother’s day program. I think I’ve explained he’s developmentally disabled and lives in a group home. He’s verbal and understands that he has celiac and that he can’t have gluten. He also understands that a Wendy’s cheeseburger is delicious and will eat it if it’s put in front of him. His house manager is terrific and understands that there’s no cheating allowed. One of the staff at his house has celiac also. They even budgeted for the increase in his food costs.
    His day program, according to him, takes him out for fast food lunch regularly.
    They raised his anxiety meds recently. I asked them to consider the correlation between the increase in anxiety and possible gluten ingestion. This is before he told me about the fast food.
    They have been so incredibly good to him and he’s made so much progress over the years he’s been there. I hate to crack down, but it’s not even optional.

    Ok, my rant is done. Thanks.

    1. I understand. My husband spent a few weeks in a nursing home and the staff would absolutely not honor his gluten free diet after saying the administrators said they would when we were looking for places while he was in the hospital. (He is not celiac but has advanced MS and GF/DF has made so much difference in his quality of life.)

      I worry for all of us when it comes to institutional settings.

      1. Exactly… my daughter said that if she survives celiac into her old age, they’ll probably do her in in the nursing home.

      2. I am wandering out into the woods with a bottle of sleeping pills in the dead of winter as soon as it is obvious that I might ever need residential care. There is no way that I am trusting to a bunch of health care workers to make sure that I am not back in pain and diarrhea and suffering.

        I was in the hospital. They starved me for five days. When I asked if the grits were instant or long cook, they answered, “it comes in a bag”. RIGHT these are the people that i am going to trust with my food choices.
        Then they yelled at me for having family bring in my own food.
        I am gonna die from something easily treatable because they don’t know how to treat this disease.

  4. Exactly! Even though having Celiac Disease is not terminal it is for lack of words a big olde pain in the butt!! One of the many things that get under my skin is when the people in my life decide to go out to eat and everyone automatically looks at me because I am in their words the one with the weird diet.(yes i know that they are just trying to be kind but it makes me feel like a big pimple on someone face that no one can stop looking at! not a great feeling) I DONT always want to choose people just pick a frickin place and I will figure it out on my own without everyone staring at me!!!

  5. I can so relate! I’ve had celiac disease for 7 years now. Restaurants are the most disappointing. I had to walk away from one the other night because 99% of their menu choices were not GF.

    I LOVE good cake, not the gross flour-less kind of chocolate cake. So many restaurants lack GF desserts, unless you want fresh fruit or sorbet. I want cake! There’s no substitute, sorry. There’s only one place in town I can buy excellent cake–a GF store/bakery 15 miles from my house. The only place where they use REAL ingredients, like butter & eggs.

    I ate at an upscale Mexican restaurant recently. They have a GF menu. I ordered my dish. The next day I paid dearly for it. The chef or server must’ve gotten my order wrong.

    The silver lining–my boyfriend is so understanding. He won’t even eat bread in my presence when we’re out because he doesn’t want me to feel bad.

    End of my rant.

  6. Just keep saying, it does get easier. After two decades of celiac most of those are non-issues for me. I still struggle with restaurants and rarely eat out. Last week I visited my daughter in Colorado and she was so excited to take me to a gluten-free only restaurant she goes to. Guess they were having a bad day, because even though the food was GF it was bad and half was not edible. I felt sorry for my daughter who wanted a nice treat for me! But the food she cooked me was all good! Your family and friends will learn as you do, give it time!

  7. I had a few constructive comments, but suddenly the thought of Bart & Judy copycatting with GlutenNude.org was more than my mind could process – so I just stopped.

    Hope everyone has a few good rants – throw one in for me – and then continue on with a happy day!

  8. Won’t say it gets easier. Just some days are easier to get through than others. We are going to be the ones making it easier for future generations. I hope. Always hope.

  9. Your quote…”I know I’m just having a bad day and it will be better soon. But today I’m tired of being strong.”

    Every once in a while when I’m tired of being strong, I go to the grocery store and buy myself some Haggen Dazs watch a great movie and go to bed. We all have days that we’re frustrated, tired, and just want to eat something wonderful and forget that we have Celiac. Tomorrow will be a better day.

  10. Wow – I could have written this rant myself it is so spot on!!

    To elaborate more on the fad GF dieter: It is not fair when I eat out with a fake GF person and we both ask for GF menus. Then I specify to the server the seriousness of Celiac and go into my spiel about CC and blah blah blah. And then the other diner orders off the regular menu anyway. It makes me worry that the server won’t take me seriously because Fakey McFakerson is so lax.

    On another note, Dude, I’m so glad to hear Mrs. Dude is on the mend and walking around!!! Such great news 🙂

  11. Boy, was that rant timely. Today I had yet another tooth pulled. My mouth is a land-mine-filled field thanks to my celiac which went undiagnosed for so long. Dry mouth=gum disease=cracked teeth & jaw problems=who knows what from here on.
    Time for pudding and BREAKING BAD.
    I love that we have this place and GD to come to when it just gets too much.
    And, yeah Dude, cancer sucks the big one. My SIL was dx’d at the same time as your wonderful wife (stage IV breast/bone). I’ll take CD, too.

  12. Like the others said, I feel like I could have written this rant. All of it – it captures the emotions (logical and illogical alike) of having celiac. I particularly identify with feeling like a burden, the highs/lows, and the attention it puts on me in groups. Not to mention, yes, feeling not-right inside despite being so strict with adhering to GF-and-more requirements for the past 4.5 years. Yes, many days it is a non-issue when I am just doing my thing in my kitchen at home. But other times it *is* an issue, and it stinks. And then just out of nowhere, everything going along fine, there comes the meltdown of being tired of the constant vigilance, limitations, and wanting to crawl into a hole and get away. In the long run, I know it is something that I should be glad can be managed by being GF – I don’t have to take drugs, have limits on what I can do in the mobility sense, am not in hospital, etc…. but you know, it just stinks all the same.

  13. Preach! Some days I’m just tired of being “that person.” And then one of my friends organizes a potluck and tells everyone “GF only.” And I feel better.

    Desserts at restaurants? Luckily Creme Brulee has *always* been my favorite.

    1. Never seen a sour cream with gluten in it.

      I wonder if the “ranter” would be feeling better if she stopped eating out or eating food prepared by people she feels she has to thoroughly interrogate? If she got some good info on what really has gluten and what is just a myth? Just my thoughts.

  14. Like many of you commented, this rant couldn’t come at a better time…or probably better stated that we all need a place to rant a bit without having to explain ourselves. I Recently started feeling a bit better…as I approach my 1 year anniversary of diagnosis, and then all of a sudden…surprise, somehow, someway, gluten hits you and you remember the hell. I struggle with trying to not make Celiac Disease a big deal to others and quietly take the precautions I need to (talk to waitstaff on the side or call ahead, read the labels, bring my own food, etc.) but often others good intentions and lack of knowledge (and really why should they know about this disease?) end up making me the center of attention and causing more stress. My wife and I often joke about it as she knows I love attention, but really, this is not the attention I want! And to be honest I feel it puts a real strain on our relationship when undoubtedly the conversation at social events turns to…well, what is Celiac disease? Not a pretty conversation to have in polite company.

    Nice to have a place to rant and whine…we all need to do it sometimes.

    p.s. having recently met a cousin of Tito’s (of Tito’s Vodka fame) I passed on big thank you…probably from more than me! 😉

  15. Betsy in Michigan

    I wouldn’t be entirely surprised if there are a (very) few cheap store brands of sour cream that have gluten in them. I just about fell over recently when I realized while on vacation that the Meijer’s (midwest grocery chain) brand “veggie” sticks (yes, I know they’re just potato chips, but it was vacation) were dusted with wheat starch! My bad for not reading the label before I had a stomach ache, but it really was unexpected. If I could eat dairy, I would feel confident that any real sour cream I ran into would be GF (on a side note, sour cream is low sodium!).

    1. Hi Betsy,
      I live in westland and was wondering if you are in the same part of Michigan? My question is, if you are in as se michigan, do you by any chance belong to any groups in the area? Thinking about joining the se mich celiac group but would like to find something closer.
      Only diagnosed a 1year. Not doing terrible, but a lot of joint pain.
      Thanks for your time.

      1. Hi Ken;
        I AM in SE Michigan!, but I don’t belong to any groups. I am not celiac (that I know of – but my late mom had fibromyalgia symptoms her entire life and bowel issues later. If she was celiac, I’m sure it contributed to her death of colon and/or pancreatic cancer). We initially went GF/DF 3 years ago to benefit my son on the autism spectrum (on the advice of his specialty physician), and amazingly it nearly rid me of MY fibromyalgia symptoms (of 15 years). Now that I’ve “cleansed” my system I have a return of fibro if I have dairy, and feel sick immediately if I accidentally get glutened (I can’t even begin to imagine what an entire slice of regular bread would do to me If I were foolish enough to want to be “diagnosed”). The diet change didn’t do a thing for hubby, but as he was the first to notice a difference he’s very supportive. I am not on a fad diet any more than diagnosed celiacs, and recently developed a delayed allergy to soy (eczema) that I had to figure out for myself (I have a great allergist who confirms that you can’t “test” for these intolerances in the traditional way). As I’ve said here before, I’ve learned more about the actual human toll/impact on people in the last several months I’ve been reading this blog than from 2 years of prior reading. I follow current research with interest; particularly testing for a gene that gives people tendencies toward celiac (I’d like to know if my children need to eat GF their whole lives, or not so much if their behavior is okay).

        Maybe being the parent of a special needs child has given me the resolve that I know what’s best for myself and my family. Luckily I don’t have a snarky family, as do some folks who post here. Consider other food allergies as well, but if it’s a delayed reaction you’ll have to figure it out yourself.

  16. Hi everyone I’m new here. I’m GI and have a rant. For the last three years I have had stomach issues. All my family and friends know it. I’m tall and thin do to this. What gets me as they will say ” you need to just start eating anything so you will gain weight”. I’m so sick of hearing it. I try and explain why and they just poo poo it off. It really ticks me off. But I do have a husband who understands

    1. Thankful for Whole Foods

      dkwtexas – welcome! So glad your husband is helpful.
      My rant for today… I am so tired all of all the extra food intolerances that make me feel yucky even when I am completely GF….dairy, almonds, garlic, a bunch of fruits, cabbage…and the list goes on. Ugh! But it’s been a year now and at least I can eat some citrus and tomatoes without feeling like my entire GI tract is on fire.

  17. What a great rant. It really describes “those days” we just feel like being over this disease. I go to bed a lot thinking tomorrow will be another day to start over with it. Yesterday was hard with many people around bbq-ing and telling me to “just taste” their homemade pasta salds, etc.
    I was diagnosed about 6 months ago now, and am still waiting on results from a third test/procedure. Meanwhile, I am reading and learning so much.

  18. Confused:
    im celiac ‘s 12 years now. I thought I had it all figured out. But reading your post, Jennifer’s book I realize I should have kept on researching the disease. I thought I was good at reading labels etc but a lot of my recent ailments can be attributed to Gluten. Im going to make an appointment with Dr tomorrow. I havent had blood test Or Colonoscopy in years. How often should I do it? Howoften do i get blood drawn? Wow I guess I gotta hit the books again.

  19. I’m sick of it too!!! And I totally agree with your rant. You are definitely not alone.

    It just never ends but I guess we all have bad days. That’s when you dust yourself off, take a deep breath and live to fight another gluten free day :). Just like a superhero. Lol.

  20. I read this and every. Single. Point. Just resonated with me on some level like I felt I wrote it. I had to read it to my boyfriend and he knows that this is how it goes. I’m not alone!!

  21. GD-

    Great post. Lol, gluten nude. Now that would increase your followers. Now if we could just get J. Law to guest post….


    Jersey Girl
    Beer commercials usually show big men, manly men, doing manly things: “You’ve just killed a small animal. It’s time for a light beer.”
    Why not have a realistic beer commercial, with a realistic thing about beer, where someone goes, “It’s five o’clock in the morning. You’ve just pissed on a dumpster. It’s Miller time.”
    Robin Williams

  22. I haven’t been diagnosed with celiac disease but am very gluten-sensitive. What’s really bothering me right now is how certain things I used to take for granted, like occasionally feeling tired or having some minor GI distress, make me really paranoid and wonder if gluten or some other food intolerance might be causing problems and if I’ll continue to have worsening symptoms. I just recently found out I react to vinegar. I’m not sure if it’s all vinegar or certain types, or if it’s due to gluten contamination or something else, but I’m cutting it all out just to be on the safe side until I see my GI doctor next year. I’ve felt much better since eliminating it. I had to spend time over vacation last week whipping up homemade substitutes for mayonnaise, ketchup, mustard, pickles, and pickle relish, staples that I use frequently. I also had to spend time shopping for vinegar-free substitutes, and it’s not like companies are striving to create vinegar-free food items and label them prominently as “vinegar-free” as they would for gluten-free, dairy-free, soy-free, etc. foods. It’s a pain, and I wonder if more food intolerances may surface in the future. Whether it’s all linked to gluten-induced damage or not, I don’t know. It would be nice not to worry when certain things happen and just be able to write them off as just not getting enough sleep, working too hard, or just eating too much of something, as a normal person would.

    1. I totally understand. Although I have been biopsy diagnosed with Celiac, I have not totally recovered by being gluten free, and can’t help but wonder what I can and can’t eat safely. I have a multitude of symptoms, still, and know I am 100% gluten free, and actually hate having to eat, as I fear what reaction will be next from what food. Doctors haven’t a clue, and in order to eliminate and then slowly add back in foods to the diet, I would have to stop eating completely, I am guessing, and then add one food at a time. Problem is, I get hypoglycemic when I don’t eat, and have actually fainted from blood sugar going low. This isn’t a simple disease, food intolerance is very difficult to deal with. And I develop intolerance if I eat any food repeatedly, so I have to do a rotational diet, as well as a restricted diet. All on my own. No help from doctors. At least not from doctors insurance will pay for. The out of pocket expense is horrific. Just wanted to let you know your problem is understood. And venting is needed. I am grateful for this blog where it is OK to do that.

      1. You know, GD? This is the kind of situation that makes me boil. If I speak my mind and share my experience, I’ll get pummeled and called names. Mean ones.

      2. Thanks, Joanne. I’m also grateful for places I can vent and let out my frustrations. I’m blessed with supportive friends and family, but I’m sure they don’t want to hear about what I’m going through all the time. I hope you can find out which foods you can safely eat and which ones you can’t so you can find your “normal”. That’s what I’m hoping I’m able to do. It’s funny because I don’t seem to have issues with soy and corn which so many others seem to have issues with (and hope this doesn’t change), and the few times I’ve tried dairy recently, I haven’t noticed issues. However, this vinegar thing just seemed to come up out of the blue and shocked me. Guess I have to be the weird one. 🙂

  23. I after 5 months post diagnosis can say celiac disease sucks. I often feel like that tv show monk when buying food, or the few times I was forced with no other options to dine out with all my questions. I feel like I have OCD but I don’t due to the screening and scrutinizing of labels. Plus it puts a damper on other things I like to do like tornado chasing and chilling at renfares due to seeing food I once adored right there and I can’t have it any more, or food turns into have a kind bar.

  24. First time here. Found this site through a posting on Facebook by GlutenFreeGarage.

    I am having one these days myself where I’ve literally hit the wall but I know that I will bounce back again as I usually do even though this wall seems harder than usual (the pillows are missing). LOL

    This blog and all of your wonderful comments are like landing on lovely, soft, cushions.

    Thanks for your comments and for a safe place to come to; I feel that my batteries have been recharged.

  25. I just found this site! Thank you! I have a ten year old daughter who was diagnosed Celiac by biopsy and also Graves disease at age eight. It has been so hard and sad for her, especially at school. Her teacher last year, in fourth grade, was not accommodating at all. She humiliated her in class multiple times despite my constant friendly emails to please notify me of what was going on food wise. The teacher would never let me know in advance if there was some food event happening even though she agreed to, and my daughter had the school year from hell. I stand up for her and encourage her to speak up for herself but it is very difficult for a young child, who looks to the adults in her life for guidance, to stand up to a teacher or other adult. The teacher was clueless, whether intentionally because she didn’t want to be bothered or because she was just outright stupid, but the sadness and shame she consistently made my nine year old feel was inexcusable. I knew it was bad but the change once school ended and she went to a camp that didn’t have food as a highlight (no daily afternoon ice cream cones, no pizza parties, no special food treats ‘just because’) was drastic. She was happy, whistling around the house again. But I know she, too, is sick of Celiac Disease. And last year was a real eye-opener to how thoughtless people can really be, and a preview of one aspect of the diagnosis that she will have to deal with for the rest of her life.

    1. Hi. If you are in the US, does your daughter have a 504 plan in place at her school? Celiac Disease is covered by the ADA, so they have to make accommodations for her if they have a plan in place. I know it doesn’t make every person willing, but it helps if you can hold it over their heads a bit.

  26. I have been suffering for about 4 years with fatigue that my great OB/GYN found out I was vit D deficient, then after 6+ months of compounded Vit D3 and my level not increasing much, then another compounded medicine, progesterone, not high lab levels for the amount I was on, I was diagnosed with a malabsorption problem, so both of those meds are now made in a form I put under my tongue. Then the last year that my joints are hurting me, the the bots of IBS and diarrhea is increasing as is my gut hurting like someone punched me, and finally if she could help me with my crazy fluctuating thyroid levels (hypothyroidism)
    I heard about a great naturopathic doctor who came to town. I make an appointment to see what can be done for the ever increasing fatigue, diarrhea (IBS), and joint pain and maybe tell me of a supplement I can take for the fibromyalgia and joint pain.
    The great doctor said it sounds like I have celiac disease, So I had a butt load of blood tests ran yesterday for celiac and I am preparing this Sunday for the Monday’s SIBO test ( Small Intestinal Bacterial Overgrowth (SIBO) Breath Test)
    I find it interesting the Celiac disease can mess up ones whole body functions. I am praying I don’t have celiac disease, it is scary the changes one has to make, and all the hype behind the gluten free diets fad! Glad I know where to come for support and help if I am diagnosed

  27. Sometimes a good rant is what is needed to move on!

    As far as the comments about how things could be worse. Celiac is pretty darn bad. I had a brain tumor that required chemo therapy for treatment. Which was pretty horrible and scary. In a lot of ways Celiac is worse, it just goes on and on. It is also horrible and scary but because it isn’t likely to kill you right away, it isn’t as respected. When I was dealing with my tumor I never once had anybody say “geese,why are you making such a big deal. I am sure it would be ok to skip your treatment just this once.” I don’t know how many times I have heard that about eating gluten free. 🙂

    Huh, I guess I had my own rant built up in there!

  28. We are all entitled to express our opinions as long as we treat each other with kindness and respect. When I’m feeling good, I’d most likely agree with Gemini…on a bad day like I had yesterday and today, I somewhat agree with the sender of the Email. Celiac is frustrating, painful and downright scary sometimes. I broke down and cried last night. I was sick, in pain and alone. I did get some much needed tlc when everyone got home from work.

    I don’t sweat the small stuff. I feed myself…I only trust a few people to try to feed me.

    I also stay away from the radical celiac sites.

    Celiac is like a box of chocolates….you never know what you’re gonna get 🙂

    I have empathy for people with more serious conditions…but celiac does certainly suck at times too! As sick as I have been and still sometimes get, I wonder if I could actually die from it.

    We need to be kind to each other…

    Celiac has me nerved up and over sensitive most of the time.

    1. Like Galwayfan, I tend to agree with Gemini on the good days. I was diagnosed with celiac 5 months ago and made it my business to educate myself as much as possible as to what exactly gluten is, less obvious places it might be hidden, etc. I think we owe it to ourselves to have enough intellectual curiosity regarding whatever health issues we’re experiencing to be able to be our own best advocates. Doctors certainly aren’t going to do it for us. Mine just said to follow a gluten free diet and I’d be fine. He obviously either didn’t know or didn’t care that there is such a thing as cross-contamination. I had to find that out the hard way. He only wants to see me for a follow-up because I also have lymphocytic colitis. That seems to concern him way more than the celiac.

      I like what Gemini said about the learning curve. In the past 5 months I’ve learned that I need to cut back on the potato chips, gluten free pretzels and other processed gf stuff that I was eating because I was angry that I could no longer eat “real” pasta, bread, cake, pizza, etc. The processed gf stuff caused me to gain back 10 of the 20 pounds I had lost due to undiagnosed celiac. I learned to be thankful that putting the weight back on means that I am healing from the damage and absorbing nutrients again; I just need to make sure I am getting nutrients and not just empty calories. I learned to cook for myself again, something I had let fall by the wayside prior to diagnosis.

      I’ve learned to be grateful that when I do accidentally ingest gluten, I pay for it with an acute, violent episode that last hours as opposed to the days or weeks that some folks suffer and that I can pick myself up and continue on fairly quickly (I try to think of it in terms of rising up like a “phoenix from the ashes”). I’m also grateful for the education and community that I’ve discovered here at GD and elsewhere on the interwebs.

      I’m curious, is there anyone else here who has microscopic colitis to go along with their celiac? GI doc seemed to find it mildly amusing, called it a “two-fer” . Jerk.

  29. GD….Thank you for taking the time to post this rant, since you have been so busy elsewhere. I say a little prayer for your family every day. I identified with every sentence in the rant! And with most of the comments as well. This is such a baffling illness to me. Even though I am so careful about the gluten-free diet, there are so many actual and potential auxiliary issues, I always wonder what else is going on medically, that originated with the CD.

  30. I cannot begin to tell you how excited I was to find your site. First, my prayers for Mrs. Dude. Second, my thanks to you for spending the time to share your story. I am only 9 months into my Celiac journey; and what a journey it has been. I just spent this past weekend at a conference working through hotel food for four days. It was a nightmare at best. Packed up as much GF I could take but could not avoid being “glutened”. Like many of the stories my numbers were high including my lymphocytes (scary). Although I have been successful in turning things around, I am now at a point where I am becoming more sensitive to exposure. It is refreshing to read some of the posts and sobering to remember my condition as a mixed blessing. Thank you for all you are doing for the celiac community.

  31. My rant… I can cope with eating gluten free. It is not the food that I miss. It is the social aspect of sharing food with my friends and family at a restaurant and eating anything not prepared in my own kitchen without fear of feeling sick for weeks as a result. It’s the fact that I can’t kiss my husband without asking him if he’s gluten-free first. I sometimes feel like a neurotic freak (like Monk). I can never relax about about it. I feel like an interrogator with my friends and family. I sometimes feel like I’m damaged. I wonder what other delightful health problems will crop up as a result of this being undiagnosed for 5 years. It is not about what food I can’t eat!

    We don’t have to compare this illness with others and rate it as “not that bad” or “worse than this”. All chronic illnesses suck because they require daily management. So, while we may learn to cope, no longer wallow in self pity, and stop crying at chocolate chip cookie commercials, it is difficult! I can’t even eat real cake in my dreams without immediately thinking “was that gluten free?!” But it is not what defines us. It is just something that is a part of us now. If anything, this has made me want to live life to the fullest because life can change at any moment.

    Thanks for listening! 🙂

  32. I have been having a bad FEW MONTHS.
    So tired of :
    ***the constantly hyper vigilance when eating out. TO the point where I dread even thinking, “let’s go out”

    ***weary of staying on guard to check, check, check, and check some more to be sure that gluten has not been put into my food, added to something that really was GF, and family still gets it

    ***now with children all grown and living in homes their own (they have no chance of being Celiac), I have to worry about eating at their homes

    ***sick of women’s meetings meaning I have to cook and pack my own food

    ***sick of answering questions about why I am eating something else – I want a really invisible illness

    ***sick of rude moderators on Celiac sites who want to keep their heads in the sand claiming that xyz can NEVER affect Celiac’s (think dirty scopes issue)

    ***sick of the pain and damage from 40 years of undiagnosed Celiac disease (and yes, I daydream about ways to get those medicals to understand and never write off another sick person)

    And then there are the “normal” life issues we all have on top of Celiac and NCGS.

    OK, rant done.

      1. It is cathartic to actually be allowed to speak MY truth about MY disease in a forum where it is simply OK to occasionally be cross about these things.

        Thanks for creating and maintaining this site. I know it takes work to make this available. And I truly appreciate it.

  33. Dear Cheryl,

    I’m right there with you. I threw a hissy fit just the other day while my husband kindly listened and then just hugged me. I was feeling great until I decided to jump into grad school while working and trying to keep up my life. I was glutened about 2 weeks in and was in hell for the next several months. I think my body was just too exhausted to recuperate quickly (usually a “mere” 3 weeks for the worst of it). And just when I started feeling better, I was whacked again at a Celiac relatives house of all places! I trust no-one (well, less than 5 people) to not poison me and we gave up eating out months ago. I cope by playing chef and trying all kinds of new recipes and creating our own. We make it fun by giving it a rating and making notes in a notebook about our food adventures. When I am just tired of cooking, my husband feeds me.

    I had to pass up a hike today because I couldn’t sleep last night due to back pain and wanted to puke all morning. Other than that, it has been a great day! Sending you cyber hugs!

  34. PS – Thank you, Gluten Dude. It is a godsend to have a place to discuss the issues and our true feelings with others that understand.

  35. So… been feeling sick for a few days and today I actually puked on myself without warning while driving down the freeway on the way to an event. Thanks, Celiac. FU!

  36. Thank you for these posts gluten dude!! I literally just googled “I’m bored of celiac” to find this after I got my third celiac panel run in a year and it’s not quite where it needs to be (of course – ugh) I felt like saying amen after every complaining comment in this woman’s email. Thank GOD we all have eachother!!

    But seriously thank you for everything you do and thanks for being strong for us!

  37. I was was diagnosed with Celiacs exactly one week before my older brother, who was 55 at the time, was diagnosed with stage 4 advanced colorectal cancer. He died on his 58th birthday. I was the lucky one. Sometimes it doesn’t feel like I am lucky. Not at all.

    It’s hard holding down a job. Sometimes just so tied and sore. Sometimes dealing with waves of neausea, using public transport, wondering if your ‘grumply’ Tummy is going to really get you in a really embarrassing situation, where you don’t make it to the loo in time.

    I have only really learned after being 6 years diagnosed that really just don’t eat out, unless the chef is celiac.

    Don’t care if you offend people and eat the food they have prepared ‘gluten free’ so you don’t offend them.

    Don’t ever stop reading labels, because the ingredients may change.

    Don’t believe everything your GP says.

    Don’t eat dairy, it causes more inflammation, something you don’t need.

    II miss my brother so much, I wish he had just had Celiacs too. I’d have good company.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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