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59 Comments

  1. 1

    phyllis

    Oh, I am crying with you!! I can’t keep my summer job due to fatigue and pain, and just don’t know how I will pay the rent. It is very depressing. I have also given up all grains, and only eat meat, veggies and some fruit. I wish I could offer you more than empathy!! I truly do know how you feel!!

    Reply
    1. 1.1

      Sassy Celiactivist

      Thank you, Phyllis, and I am so sorry you are struggling, too. The money part is extremely difficult. If it wasn’t for my mom’s help, I would probably be homeless right now.

      Reply
  2. 2

    Babs

    Oh, I wish I had words of wisdom to share but I haven’t been able to come up with a short and scathing response to statements like this. I’ve been lucky enough to have very supportive family and friends in my journey through extreme illness, diagnosis and now almost a year of recovery. I wish that were the case for everyone but I’ve heard so many stories like this it just breaks my heart a bit every time a new one pops up. I’ve had idiotic statements made to me but never by anyone I’d consider a friend…and honestly my response has varied depending on who made the comment and how much energy I had/wanted to invest in educating them as to the realities of my life with Celiac.

    Reply
  3. 3

    the other CD

    Mary-Lou
    It must be difficult enough to watch your talented daughter struggle with her health, without having the added damage of thoughtless comments like that to deal with. You are a great mom to reach out on her behalf.

    It is a challenge not to take hurtful words personally, but that is what must be done. It helps to have a few zingers or ‘come-back lines’ to fire back. Sometimes those ‘one liners’ make others stop and think, or just shut them up, or even better – starts a conversation that ends on a positive note.
    I’ve used phrases like: “do you REALLY want to trade places with me?” or ‘be careful what you wish for” or “I’ve paid a high price for this lifestyle – I don’t think you have the guts to afford it”.

    Humour, when you can find it, helps.
    Wishing you both all the best on this journey.

    Reply
  4. 4

    Rick

    I am reminded of a time, in the last century, when our daughter was in 3rd grade. You remember 3rd grade ? Tattling and constant name calling. Our daughter’s teacher said the key to her surviving this age was to teach I-G-N-O-R-E.

    I have found this simple advice to be most helpful.

    All the best.

    Reply
  5. 5

    J

    Establish a support system with positive people. I never knew that I was surrounding myself with jerks until I went gluten free. I don’t talk to half of the people I know because of their negativity towards me. Ever since then, I’ve been happier and healthier. Tell your daughter that she has the power to move on from them and this. It’s difficult to let go of all types of negativity but you must in order to move on to more positive things.

    In regards to the going out thing, search for places that are 100% gluten free, if you don’t trust those that coexist with gluten. I know there aren’t a lot out there but it wouldn’t hurt to search for them.

    We are all here for the both of you. If you guys need to talk or anything like that, let us know, and we’ll be there for you.

    Reply
    1. 5.1

      Sassy Celiactivist

      Hey, J, I know you didn’t realize this post was about me (neither did Gluten Dude lol), but thank you so much for your kind words. It’s tough enough keeping the friends you made when you were healthy and became sick, but it’s also pretty tough making friends when you’re in the midst of illness, but I’m workin’ on it. I’m also accepting the fact that it is better to be alone than to be around people that don’t understand, as hard as it is sometimes.

      As for going out with friends/drinking, it’s more to do with how much it takes out of me and/or how long it takes me to recover (even if I DON’T drink, I’ve found!). I always joke that there needs to be “day bars” for people like us…and I don’t mean the alcoholics who hang around pubs every day haha It’s why I try to make a point of going to the gym even if I’m feeling lousy, and people have started talking to me here and there. It’s a slow process, but I’ll get there!

      Reply
      1. 5.1.1

        J

        Sassy!!!!! I had no idea! You are so amazing and kind! LOL I was like wait a minute what?! Sassy?! Lol ah, if we lived near each other I would totally chill with you on the couch or even the gym! I got ya back girl!

        Reply
  6. 6

    Miss Dee Meanor

    SYMPTOMS:

    fatigue
    pain
    nausea and vomiting
    constipation and diarrhea
    nutrition and eating problems
    anemia
    hair loss
    confusion and memory problems
    skin changes
    loss of lilbido
    fertility problems

    Sound familiar? This was not taken from a list of Celiac symptoms although they are the same. This was a list of symptoms from CHEMOTHERAPY. The Celiac symptoms list would include all that and more.

    One crumb is to us like having a dose of chemo. Would someone on chemotherapy be told to take cold medicine to make it better? A difference is that we don’t plan or know when we’re going to be glutened. We don’t have the ability to block out dates on our calendar because we know we’re going to have severe symptoms and won’t be able to function. Church ladies, close friends, and even family members don’t rally to help us by preparing meals for our families or taking care of the laundry when we’re incapacitated. We are on no one’s prayer list. We are expected to carry on because it’s not that serious, right?

    If the general population were randomly given a surprise dose of chemotherapy in their food, perhaps they would better understand our symptoms and our fears about ingesting this toxin. I’ll bet the internet would light up with warnings about supposedly “safe” foods that actually contain chemo. Restaurants who advertise “chemo-free” woudn’t dare prepare their food on surfaces that contain the toxin. You get my analogy. (It’s the best I can come up with having recently given up caffeine.)

    As much as I appreciate the perky celebrities and athletes bringing attention to this disease, their recovery is not typical of the majority of us. I think it distorts the reality of what life really is like to those who struggle each day with avoiding something as small as a crumb of our “chemo toxin” which is gluten. For us there is no cure and there is never an end because “crumbs happen”.. Also, just like chemo, heathy cells and tissue are destroyed. Some never fully regain the health they had depending on the amount of damage done prior to being diagnosed.

    Oh, and Celiac kills us, too. Maybe when Celiac becomes the “Other Big C” the general population’s perception will change.

    Reply
    1. 6.1

      Jen M.

      Dee, this is freaking awesome. Love the analogy.

      Reply
    2. 6.2

      Sassy Celiactivist

      Miss Dee Meanor, I don’t even think I have the words to express how wonderful you are, and how much your words mean to me. This analogy is amazing and really hit home for me. Yes, we’re expected to carry on. If you have Celiac Disease, you “SHOULD” feel better after going gluten-free and “MOST” people make a full recovery. Really? For one thing, “most” is not “all”, and “should” is not “will”. Crumbs are unavoidable, even if you only eat at home. Every time you go out into the “real world”, there’s a real possibility of picking up a crumb somewhere.

      I hope that things will get better, but I have no idea if they will. Just as an aside, I actually started watching “The Big C” just to try and find some inspiration for remaining positive through chronic illness and pain.

      Reply
    3. 6.3

      Weylon

      I pray for you. I want us to all be in good health.

      Reply
    4. 6.4

      Kim Richard

      Miss Dee Meanor: My response is 3 years later, but you hit the nail on the head exactly! I am a 5 year breast cancer survivor, so I know FIRST Hand what chemotherapy feels like! It is exactly what you are describing. I have been having celiac symptoms for about 3 years now, i guess, and dr just tested me for it. The second test came back negative. I discovered yestereday she did not do the full celiac panel. I am so frustrated. I have been telling my family for months that I feel like I am still on chemo.

      Reply
  7. 7

    Mandi

    “That being said…it seems like her friend is kind of a bonehead. Make sure she surrounds herself with people who make her feel good”

    My first thought was that, whoever that WAS..they were not a friend..! Those also sound like symptoms of MS…I have a friend who was originally diagnosed with Fibromyalgia..where I think that is a bogus DX ( not that I don’t believe your symptoms..I think there is something underlying causing them and Fibromyalgia seems like a catch all DX), after multiple more dr’s trips and them asking if she just wanted Disability she finally went to someone who believed her and they found out she had MS! You just never know.

    Reply
    1. 7.1

      Sassy Celiactivist

      Yes, they have basically “decided” I have fibromyalgia because of my descriptions of my pain. I have seen MS come up a couple of times, and it has me really curious. I looked it up briefly and it looks like MRI is used to possibly diagnose? Any tips for approaching my doctor about this?

      Reply
      1. 7.1.1

        E.J.

        MS indeed causes this kind of crippling fatigue. It’s actually the most debilitating symptom for many with that diagnosis. About 9 years after finding out about my celiac, I was finally diagnosed with MS too. In the beginning, my major non-GI/celiac symptom, aside from fatigue, was chronic pain. I had MRIs in the beginning that didn’t show anything. 10 years later, finally, some lesions turned up on my brainstem. It actually was a relief to finally know. It is a horrible, horrible thing to have an invisible and debilitating illness like that, especially when it hasn’t been diagnosed. I think there’s a tendency these days for women presenting with pain and fatigue to be diagnosed with Fibromyalgia, without further investigation being done. Perhaps it might be worth mentioning to your doctor that people with celiac have higher rates of MS, if you think that might help you get an MRI. Even so, it can be so difficult to get a diagnosis. Other autoimmune conditions also commonly go along with celiac. I’d be suspicious that perhaps something more was going on with you. I really feel for you.

        And having an invisible illness…! I was told I was a hypochondriac by “friends” and even had a neurologist tell me, pre-diagnosis, that I had a “fantastical” imagination. Another doctor told me all I needed was to develop a spiritual practice and take more walks in nature(!). People who aren’t sick just can’t comprehend how simple things that they take for granted and wouldn’t think twice about–like meeting up with a friend for a couple of hours or making dinner–can leave someone like us bed-bound and/or in hideous pain for hours or days afterward. People are so judgmental.

        Reply
      2. 7.1.2

        V

        I’d probably say something, as my sister would say “here’s your sign” or as my friend says “you’re so pretty” (as in that’s all you’ve got going on, huh).

        As someone with multiple health issues, I’d suggest you go directly to a neurologist, get a spinal tap and MRI (and if you’ve had vision issues, a checkerboard test), to at least rule MS out. There are several other chronic diseases that present with similar symptoms. I’d also recommend a trip to the endocrinologist for an evaluation of your thyroid function as well as testing your Vitamin D and B12 levels.

        I hope you figure out what ails you. It sucks to feel shitty. Here’s something to make you laugh (I have MS! I win! http://thebloggess.com/2012/06/back-on-tour-last-leg-probably/) and something to make you think (and know you’re not alone http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). I wish lots of spoons for you very soon!

        Reply
  8. 8

    Mandi

    BTW Dude…how’s the GI stuff going ?

    Reply
    1. 8.1

      Mandi

      Ha..NVM..read your other post lol Forget the last question lol

      Reply
  9. 9

    Donna

    OH my! I can certainly sympathize! I work at a Town Hall and the pain and exhaustion is so severe at times that I will fall asleep at my desk! On Tuesday, I dozed off and the Town Supervisor just happened to be watching while I did it. I mean, it’s not like I am sleeping for hours on end and the town residents have to wait for me to wake up. I was told the day before yesterday that the Town Councilman were talking about it and I may not get a raise this year because of it. Well, the funny thing is, my boss–the assessor–was out on “medical leave” for three months last year. Yes, that left me in charge of the office. I did such a horrible job that I got a letter of commendation from one of the town residents, I covered 3…yes three (3)…small claims acting as the assessor and won each and every one of them. Backing up a little bit, the Town Supervisors secretary got pregnant and was ALLOWED…YOU HEARD ME…ALLOWED to take a nap daily. A NAP during working hours. Ok…let’s compare…pregnant…Celiac Disease and Fibromyalgia. Hmmm…quite the difference huh? Anywho, I have been having an inner debate as to whether I should contact my lawyer or not. Mind you, I have been here for six (6) years, I am the lowest paid person in the building, AND I am the lowest paid assessors aide in the County. As you can tell from above (letter of commendation from resident and SOME of the residents will not even SPEAK to the assessor…they will only speak to ME!)…pretty shitty job right? I think I just made this all about me and I am sorry about it! BUT…I guess what I am trying to say is NOBODY understands what we go through with Celiac. Sometimes the exhaustion is so bad that I fall asleep at my desk…while speaking to my husband or son…among many other aspects of my life. I wish you the best Mary Lou!!!! I definitely understand what you are going through and KNOW that you don’t “sit around and laze all day!!!!!” Know that there are others going through the same thing!!!! ((((HUGS))))
    Donna

    Reply
    1. 9.1

      Sassy Celiactivist

      Don’t feel like you made it “about you”, THANK YOU for sharing your story! I honestly want to hear EVERYONE’S story, because sometimes it is very hard to not feel crazy! I don’t wish that others struggle, but knowing that there are others is somewhat comforting and reassuring. I know that how I am feeling is not normal. I’m sorry that your workplace is so unsupportive :(

      Reply
      1. 9.1.1

        Donna

        Thank you so very much for your support Sassy!!!! It means a great deal to me!

        Reply
  10. 10

    Rachel S.

    he doesn’t sound like much of a “friend” to me. Of course “friends” can make pretty insensitive comments, too. A lot of it is just pure ignorance. If I were her, I would take her “friend” aside and explain to him that her life is not a beach and that maybe he should have Celiac Disease for a week and see what it’s like. Of course that can’t happen. But the biggest problem I see is just ignoring what he said and putting up with it. He may (and probably doesn’t) have no idea what he just said was hurtful and insulting. She needs to let him know exactly this. And if he doesn’t listen or doesn’t care, than he’s not a “friend” to begin with.

    Reply
  11. 11

    Amanda A

    I can really relate to this woman. I suffer badly with my Celiac and I get horribly sick off of airborne flour. Actually airborne flour is way worse then eating something with gluten in it. This makes it impossible to go into grocery stores with out getting sick and many many places in public. No one is understanding of that, except my boyfriend and I am so happy to have him in my life.

    I had a “friend” for 11 years. She stopped being friends with me in large part because of my Celiac. I can not eat out (I am too sensitive) I can not drink and even though I offered to make her dinner that was not good enough for her. She and I are no longer friends and I am glad. If a “friend” is not supportive of you no matter what it is that makes you sick then they were never a real friend. If you can not educate them and get them to understand my advice would be to part ways. There are very supportive people out there don’t waste your time on the ones who refuse to believe Celiac is real.

    I don’t know how many times I have heard that Celiac is not real or just eat anything you want it does not matter. It truly does matter, would you tell a diabetic to go eat a bunch of sugar? No, you wouldn’t. So why then would you tell a Celiac to go eat gluten?

    Reply
  12. 12

    Concetta

    I’m a type I diabetic as well as gluten allergic. I know what she’s going through!

    All of us who have these “invisible diseases” suffer through jerks like that. Its part of the deal. My response back is usually “Did you mean what you just said?” because most people don’t. If they said they did, then I launch into education mode.

    Hang in there, and look to your celiac/gluten-allergic friends for support. If she’s getting worse, it might be time for more testing, too – she could have other allergies or other auto-immune disorders.

    PS Celiacs aren’t the only ones who get rude comments. I get “You know, if you lost weight you wouldn’t be diabetic anymore.” Umm, yes I would! I haven’t possessed a pancreas that worked at all since 1991. People are so insensitive and assume they know everything about medicine because they heard about it on the news in a 20 second soundbite. Pain in the butt, it is!

    Reply
  13. 13

    Rachael

    Maybe we need “Dumbshit Cards” to present to folks kind of like restaurant cards. Rather than detailed information on preparing a gluten free meal, it could says things like…..1)Celiac is a chronic, multi system, autoimmune disease that has over 200 manifestations. 2)I feel like crap. 3)Why do you say dumb shit to me? 4)Does this make you feel better about yourself? I’m sure we could all add quite a few items to this list! My recent comments from a close friend revolved around vaccinations. I vaccinated my children and 2 out of 3 of them, as well as myself, have celiac. She does not vaccinate her children. This is something that we disagree on but she likes to say, “Don’t you think your kids have Celiac because you vaccinated them?” This is her own need to feel confident in her decision to not vaccinate. She wants to hear that my kids are sick because of vaccinations. I finally told her that I can’t stand when women, mothers no less, say crap like this. The ship has sailed, and every day I wonder how Celiac is caused and what, if anything, I did wrong besides passing on my flawed DNA. The guilt is overwhelming. Shut your piehole and be supportive!

    Reply
    1. 13.1

      Miss Dee Meanor

      Rachael, I love the “Dumbshit Cards”. I think your “close friend” needs to be given one that says “I am removing toxins from my life. Gluten is gone. You’re next.”

      Reply
      1. 13.1.1

        The Gluten Dude

        That is PERFECT Miss D.

        Reply
    2. 13.2

      Sassy Celiactivist

      LOVE the “Dumbshit Card” idea! And yes, the guilt and the blame is something I am planning on discussing more.

      Reply
    3. 13.3

      Ellen

      The latest research appears to indicate that the trigger for Celiac Disease is a virus. Not vaccinations, not bad mothering, not too much/too little sunshine or dance lessons or whatever else certain people may decide is bad for your children this week.

      The tendency is genetic. You can’t help that. Just like Huntington’s Disease, you pass the gene without knowing (Especially if you’re not diagnosed until you are an adult.) And even with the gene, lots of people never develop the disease.

      As parents, we all have plenty of things to feel guilty about… Celiac Disease doesn’t need to be one of them.

      Reply
    4. 13.4
  14. 14

    Denise

    Some people will never get it. I’ve explained numorous times to my family and they still don’t get it and of course the name calling begins. I limit my time with them. Surround yourself with positive people who understand.

    Reply
  15. 15

    Jen M.

    I usually say, “I’d rather be working my ass off feeling well then be stuck at home feeling like shit. This isn’t a vacation. I’m very ill and trying to get better. I won’t gross you out with the symptoms.” You could also say, “Then let’s trade! You can have my disease instead! I would gladly give it up.” Or (in a glib tone), “I’ll put that in the “pro” column of having this disease. Of course, lying around sick is a little different than lazing.”

    Bonehead is right.

    Reply
    1. 15.1
    2. 15.2

      Sassy Celiactivist

      Yes, exactly. He was tired from working all day and making a ton of money. I feel rotten, lousy, am unable to work, and am barely scraping by. Tradesies?

      Reply
      1. 15.2.1

        Jen M.

        Yeah, no kidding, Sassy. I’d trade what we have for what he has ANY day of week (minus his tendency to make dumb comments). :-D I’m not working right now due to celiac, too. And ya know what? The same people who used to tell me not to work so hard or such long hours are now making comments about how I must be relishing this time off to just do nothing and asking what I do all day. Are they joking with this crap? Umm, I’m SICK all day. And I’m annoyed all day because I tend to be happiest when I’m working at a job I love, and I hate not being a productive member of society. We don’t have kids so the perception I guess is that I’m a “kept woman” living in the lap of luxury. My husband very sweetly reminds me to ignore these people because theyve never been sick and dont understand and that my only job right now is to rest and get better. :) My co-worker and now friend says I need to first be a HEALTHY member of society. These loving comments from the people who are supportive are what help me get through the unsupportive comments. I’m sorry to hear you’re going through this, too, but it makes me feel less alone to hear your story so thanks to you and your sweet mom for sharing it. :)

        Reply
        1. 15.2.1.1

          Sassy Celiactivist

          Your husband sounds sweet, and your friend is right! I, too, feel better knowing I’m not the only one not only struggling, but unable to work because of this. There’s another awkwardness when meeting new people…”what do you do for work?”.

          Reply
  16. 16

    Madame Free-From

    Interesting post, and a very painful topic. There’s plenty of good advice here already, and sadly I have to echo the commenters who have said, ‘some people will just never get it’. Educate people as much as possible, sure. After all, I didn’t have a clue what coeliac disease was until I was diagnosed.

    But even with education, a few people will always tend towards the negative. Coeliac can be a great bulls##t filter: the kind and wonderful people in your life will rally round with support, recipes and most importantly, not making you feel like a freak. Others will pick at what they don’t understand, they’ll enhance the negative and they’ll add to the struggle. The best advice is to surround yourself with the first category and develop a thick skin when dealing with the latter. Good luck!

    Reply
    1. 16.1

      Sassy Celiactivist

      Very good advice, and it’s true. I saw this recently, “If you can’t handle me at my worst, then you don’t deserve me at my best”.

      Reply
      1. 16.1.1

        IrishHeart

        Love this line!!

        Reply
      2. 16.1.2

        Erica

        That’s a great line! I might use it – but it’s a better dating line than retort for a friend ;)

        Reply
        1. 16.1.2.1

          Sassy Celiactivist

          I did use that with a date once, Erica…well, more along the lines of…usually when you meet someone, you want to be at your best. I am closer to my worst than my best, right now, but hey, if you like me at my worst, imagine how much you’ll like me at my best. I like it better the way I wrote it above. More powerful, and more confident. I will remember that for next time ;)

          Reply
  17. 17

    Jen M.

    Or with a sly grin, “You know the saying ‘Be careful what you wish for’? Chronic diseases are probably in that category–just FYI from someone who has one.”

    BUT we should always remember that, like it or not, we are all ambassadors for our own cause. Unfortunately, no one is doing a great job on PR for us yet (the Big Five and university programs are definitely trying, but need to work together and catch up).

    As ambassadors, we should never give up on educating–even if it means spouting an accurate celiac stat for every stupid comment made about celiac. Eventually, we’ll convert those who are worthwhile and wear out the ones who aren’t. And that’s pretty much what PR is all about. Repetition of the right messages to the right people. If we all work together, we can extend the reach of our communications about our disease–celiac by celiac. We just need to make sure we’re up-to-date on facts and stats that we use as talking points or “objection handling.” I mostly rely on University of Chicago or Maryland celiac research and fact sheets so when a bonehead wants to know where I learned something, I can point back to a research institution to shut em up. ;)

    Reply
    1. 17.1

      Miss Dee Meanor

      I agree on quoting the latest research, Jen. I am the gluten Jerry Maguire when I read anything about gluten intolerance or gluten sensitivity. “Show me the research!” Even the most uninformed GP will take notice when you show them published peer-reviewed double blind studies from teams of researchers at major medical universities. For some reason “I read it on a blog” just doesn’t convince them. ;)

      Reply
    2. 17.2

      Sassy Celiactivist

      Yes! It can be very tiring, but I educate as much as possible, even if it’s in line at the grocery store when the clerk makes some comment about how “trendy” gluten-free is :P

      Reply
  18. 18

    Robin

    NOT A FRIEND. A relationship with a person who puts you on the defense about being sick isn’t worth the breath it takes to explain yourself.
    Yes, we Celiacs love lazing around . It’s fun being in the bathroom for hours and aching like we have the flu…and the mouth sores…now those are peachy …

    I had to stop myself because I could go on and on…how about sending that “friend” the link to this post and let them hear from others who have this disease? Maybe after reading through the comments they would get a stinkin CLUE

    Reply
  19. 19

    Sassy Celiactivist

    I woke up this morning and routinely started checking my Twitter feed. I saw Gluten Dude’s tweet about a new post about insensitive comments and thought, “huh, how appropriate”. As I started reading the post, I thought, “wait a sec, this sounds really familiar”, and as I read on, I began to tear up as I realized that the email was, in fact, from my mom, out of concern for me. Gluten Dude had no idea, I had no idea my mom had sent it, and my mom had no idea that he would post it, but I’m so glad he did. I know I’m not the only one who is struggling, and who receives insensitive comments from “friends”. I just thought I would explain how I DID respond, and then I’ll go back and reply to some of the comments individually.

    Quick background: I lived in Victoria for the last 10yrs of my life, but since I needed surgery (due to Celiac damage), I had to move close to family in Chilliwack so I would have people to take care of me. I’ve been here since September, surgery was November, and I’ve been sick the whole time. My point is, my “friend” pool is very limited LOL Through my Kinesiology background, I volunteered a bit with the local rugby team, and made some “friends” through there.

    This “friend” was just dropping something off, I had told him I was too sick to hang out. He couldn’t understand how I was still so sick, and then the insensitive comments were made. At the time I said, “Trust me, you wouldn’t want to feel like this”.

    After he left, I was pretty upset, so I texted him this: “Just so you know, this isn’t fun for me. It isn’t relaxing. It’s to the point where I can’t even hang out with friends, can’t go to the movies, because it’s too painful to sit for two hours. If I stay up later than normal, then I’m out for days. I don’t have a *bleep* cold, I’m chronically ill and they don’t even know how to fix me, yet. It’s obvious you don’t get it, but when you don’t understand something, it’s best to keep your mouth shut. What you said was incredibly insensitive.”

    To which he replied, “I’m sorry, I don’t understand your disease”

    I told him then he doesn’t get to judge, and to have a little compassion. I said I realized that it wasn’t intentional, but that this is really hard and that I feel really alone in all of this.

    Overall, I think I handled it pretty well, but it is definitely emotionally tiring to have to do that….like we have to justify ourselves. I definitely agree, though, that educating others, when possible, is extremely important.

    Thank you for all the support and all the comments, they are truly wonderful and helpful. Keep them coming! Like I said, I know that this is helpful for others, too.

    Reply
    1. 19.1

      The Gluten Dude

      I don’t know what to day Sassy. You’re one of my favorite fellow celiacs and I had NO IDEA the email was about you.

      I’m so glad/relieved that you are cool with it. And the fact that somebody was that insensitive to somebody I know and care about pisses me off even more.

      I think you handled it as you handle your disease…with courage and grace.

      Hang in there my friend…

      Reply
      1. 19.1.1

        IrishHeart

        I read it just now–I’m a day behind here.

        and I had no idea it was my old pal Sassy either, at first, but because I know her story, I should have. She is one of my fav fellow celiacs, too!!!!
        :)

        We “met” last year and then I did not get to see her for awhile because she had major surgery and was worried about her until she gave me an update.

        To Sassy’s Mom: Your little chick has more courage in her baby finger than most people I know.

        Your love and concern for her is evident and reminds me of my Mom. As I was slowly dying from this thing, in horrible pain and no one could tell us why, she fretted constantly via long distance for 3 years and I know how hard it was for her. No matter how old we are, we’re still our Mommy’s Baby. :)

        I had some friends abandon ship myself when I was ill. So be it.
        Adversity reveals true character. It hurt, but I moved on.

        Sassy, your friend needs to read some info about CD, girlfriend.

        As for what can you say to insensitive people? Well, you can take the “F U” road or you can take the road you took. Tell him why it hurt so much and then, give him a chance to make it right.

        Hugs to you!

        Reply
    2. 19.2

      Rachel S.

      I’m very proud of you that you stood up to your “friend” and told him that your life is not a bowl of cherries. Hopefully he realized what he said was uncalled for, insensitive and wrong. Sometimes I think people will say things and they don’t think about enough beforehand. They can just blurt out things. I know I’m guilty of this sometimes. However, he owes you an apology or at the very least, he needs to man up and realize what he said was a mistake. If he’s cocky and unsympathetic still, than he’s not a true friend. You need him like a hole in your head. I hope he realizes that it’s his loss, not yours.

      Reply
  20. 20

    J

    Oh my goodness! My Sassy!!!! We love you Sassy!!! You’ll always have us! *hugs* and your mom is such a loving mom! *hugs to her too*

    Reply
    1. 20.1

      Sassy Celiactivist

      Yes, my mom is wonderful. It’s like Miss Dee Meanor said in a previous comment, it’s our loved ones that see the most damage of this disease. For the most part I really do my best to put on a brave face or “voice” ;), but my mom often sees or at least hears about the times that bring me to tears, and she can usually tell in my face when my “bad days” are. I know she feels helpless a lot of the time, but she helps me more than she knows :) <3

      Reply
  21. 21

    Jen M.

    When I saw kinesiologist I wondered if it was Sassy only because she’s the only kinesiologist I “know” (through Twitter). :) I agree that it can be very tiring to constantly have to defend our illness. I’ve cried many times after co-workers, family and friends have made insensitive comments. It feels impossible to struggle through this disease while having to also defend those struggles. I barely have the energy to function on a basic level and definitely don’t have the emotional or physical energy for what feels like a constant fight with the non-celiac population. :-/ And it’s only been about a year since dx as an official celiac (though, symptoms go back 24 years to age 10, though). Hats off to all the veterans who’ve been representin’ for years! Gluten Dude and other well-known voices/bloggers in our community (both veterans and newbies alike) also give us a forum to educate others and to vent/share/connect, and I am very thankful for that amidst all the non-celiac negativity and horrible symptoms…on those days when I feel like giving up and just becoming a social recluse. :)

    Reply
    1. 21.1

      Sassy Celiactivist

      Exactly, my lack of energy in general makes dealing with comments like that, or people like that, even harder. We can only do the best we can do with what we have in that moment! Extremely thankful for the support and, as you mentioned, the “veterans” ;)

      Reply
  22. 22

    Phyllis712

    I have been verbally abused by my father & sister because of this disease. My mom is nice, but she still doesn’t really understand it…but at least she is nice. Sis SCREAMS to the top of her lungs that SHE doesn’t need this STRESS in her life!!! (she thinks SHE has stress…. :) I hardly mention my Celiac at all, but when it ever comes up, my sister is extremely nasty. Like when she would want to bake with gluten & my Dad was cooking some veggie dish that I was going to eat, sis would insist she had to bake first, even though that meant I could not eat the veggies that were prepared in the kitchen right after that because of the airborne flour. I have explained the airborne flour thing before, but she does not understand it nor does she take it seriously. When she would bake, I would stay out of the room for 24 hrs. She baked with gluten flour 2 1/2 months ago & put the ceiling fan on. I was out at the time. I became so extremely sick from that, my gut had never been damaged like that before. I am still healing. I am eating bland, no roughage, dairy, spices, oil, etc. It will be a long time before I get back to normal. Dad is finally starting to get it now. And finally now mom removed the flour from the kitchen & sis is moving out. So now all I have to deal with is bread & cereal around, but at least no more airborne flour….thank God!!!
    I can empathize with all who have been treated nasty by family. I am fortunate that friends & coworkers are nicer, but the family thing has been a huge struggle. I am so happy to have found this community. You people are awesome. Nice to know that none of us are alone in what we are going through. Gluten Dude, you can’t imagine how much good you are doing for others. My sincerest thanks to you.
    And Gluten Dude, you are still in my thoughts & prayers.

    Reply
    1. 22.1

      The Gluten Dude

      I thought family is supposed to be the one thing you can count on. Sorry to hear this Phyllis :(

      Thank you for you good wishes.

      Wishing you the best!!

      Reply
      1. 22.1.1

        Phyllis712

        thanks GD! :)

        Reply
  23. 23

    Phyllis712

    PS: I just realized I forgot the whole purpose of my post, I was so busy talking about me (sorry) :)
    Sassy, don’t worry about what your friends think. If they are not supportive of you then they are not your true friends. You get to choose your friends….not your family though….so I am really happy that you have such a supportive & compassionate Mom. The people in your family are the ones that count & your Mom obviously cares about you very much. I hope that you heal & feel better, & that you are able to get back to leading a full, happy life. You sound like you’ve been through so much with your surgery & you have a tremendous amount of courage. I hope that you will continue to get stronger.

    Reply
    1. 23.1

      Sassy Celiactivist

      I’m really sorry to hear about your family, too, that is awful. I am really thankful for the online Celiac community, as well. I may not have a lot of friends in town right now, but it is wonderful to have such a great bunch of cyber friends to lean on :)

      Reply

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