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34 Comments

  1. 1

    Kelly

    First off, she said “self diagnosed”. I am medically Dx’d, as are both of my kids. If I “self diagnosed” myself, my parents too would not acknowledge it, thinking I was nuts without fact. They could merely be gluten intolerant or allergic to wheat. I’d suggest getting medical documentation. After that, I’d then mail a copy of the results, along with a few printed papers about what CD is, and what it can do, to my parents, for lighter reading of course. When my daughter was Dx’d, my parents were all over it. When I was Dx’d, they didn’t believe me, pushed me off as self diagnosed and stopped talking to me. It wasn’t until I ran in to a cousin who saw me and nearly died (had lost 80lbs in under 6 months), who then called my mom to ask WTF is going on??? My parents showed up at my door. I showed them my paper chain of hospital bands, bucket full of prescription meds, and genetic testing results. They now get it, although believe I did not inherit it, as they “don’t” have it (and continue to refuse to be tested). Parents can be difficult, especially when they are older. As I said in the beginning, don’t “self diagnose”, get the facts. No one can argue the facts.

    Reply
    1. 1.1

      Amber

      Good point. I recently requested all my family members be tested. I just had my 13 year old daughter tested on Tuesday, we shall see what the results are. I do wish, however the blood test was more reliable, but it is somewhere to start. Family support is an important thing.

      Reply
    2. 1.2

      Amy -The Quirky Gluten Free Runner

      I am “self-diagnosed” because my medical team would NOT test me, even though I have siblings and aunts with celiac, and I have an autoimmune disease that already increases my risk of having another auto-illness.

      My parents have NEVER treated me like I don’t have celiac, or that I am lying. My mother forgets, my dad does all the cooking now since her stroke. My MIL forgets, but my hubby is on my side (he’s seen me get glutenized, i don’t need the medical diagnosis at this point).

      Reply
    3. 1.3

      Heather

      I am gluten intolerant possible celiac. I refuse to be tested since it meant going back on a gluten diet for two weeks of shear misery. And for what just so I can have a medical doctor tell me what I already know so everyone can “believe” that I am not just making this up. f that mess. not worth it. My gastro and internal medicine doctors do not blame me one bit. As long as I stay away from gluten I am fine.

      Reply
  2. 2

    TxCami44

    Unfortunately, and I hate to confess this but I was one of those people who only half heartedly worried over people with allergies/intolerances. My mom was diagnosed with diabetes 2 and overhauled her entire way of life with little recognition/help from me besides the occasional “good job, Mom”. How embarrassed am I ? Yep, I now understand the frustration and some days I win and some days the frustration wins. I can only hope at the end of the day that your mom is just incredibly ignorant ( like I was) and she truly does not understand the severity of CD since in most instances it does not take an epi pen and an immediate trip to the ER. Keep on trying… This coming from the girl who eats Kind bars while everyone else is having chicken fried steak and fried okra.

    Reply
  3. 3

    Miss Dee Meanor

    In all fairness, it is easier to avoid a peanut allergy than a gluten intolerance. I know this from years of preparing food for my son-in-law who has a severe peanut allergy. When I discovered I was gluten-intolerant it was mind-numbing on what I could safely fix in my own kitchen. Everything in my kitchen was contaminated with gluten from the food strainers to the cutting boards to the jars of mayo to the backyard grill. Everything had to go and be replaced.

    It may not be indifference on her part, but really a case of having no idea what foods are safe or how to fix foods without cross-contamination rish. When you don’t have this issue you can’t even know if your spices or condiments will make a celiac sick. Would you really trust the food even if she said it was gluten-free?

    If you enjoy their company, take your family’s food and show how many mainstream products are safe.Sometimes we forget that although we know our shopping list by heart, others simply don’t have time to read 1000 labels before choosing a salad dressing. It’s not worth the risk eating food that someone in a “glutenous” kitchen has prepared. I learned that when I attended my aunt’s funeral in a neighboring state. I was careful to eat only the prepared vegetables. I was sick for two weeks.

    That said I think you should talk to you mother. It may not be she isn’t concerned about accomodating you. It may be that she has no idea how to do it.

    Reply
  4. 4

    Kristyn

    I would bring my own food too. In fact, I do whenever we have family gatherings. I know it’s safe and who cares if I eat their food or not. If I skip a family function, it’s because of the people not the food. :)
    You can’t convince everyone what you deal with is real, you just have to do your best and move forward. Let the frustrations slide and keep talking and talking and talking about it until people start to listen. I discussed it the first few months to everyone in my life until they were sick of hearing it, but guess what, they know I get sick and no one wants me sick so they give their best try.

    Reply
  5. 5

    Wendy

    This is really not part of your rant, but since it was brought up I have to chime in. I don’t know your medical history and why you have not been diagnosed.

    I have had to do the same thing and whether I am “merely intolerant” or have celiac – it does not matter. I get more than just a minor tummy ache when I am exposed accidentally. It’s sad to not be taken seriously by others and even those with celiac disease need to be educated as to the seriousness of this – non-celiac gluten intolerance needs to be taken just as seriously and there is no test except for an elimination diet. When diagnosing celiac disease there are many, many errors that can occur and so getting diagnosed is not cut and dry.

    It took me over five months to figure it out – all the while going to doctor after doctor with no real answers. I refuse to purposefully eat it to be further tested – so I don’t have a piece of paper, but I do have my gastroenterologists baking me.

    Since I don’t have a definite – I sometimes agree with wait staff if they ask, but with my family and friends they know that it is highly probable that I do have it. I have other auto immune issues as well that correlate strongly with celiac. And I leave it at that . I have had my daughter tested and I have done the genetic testing – still no definitive so I say “probably”.

    As for your rant – I hear you, but I think it is just something to move past. I have had to get over this same situation with friends and as for my family I never expect them to feed me and I’m okay with that. If they make fun or dont understand they need to be educated and let them know how you feel a little left out, but honestly feeding yourself is your best bet. Yes, it’s a bit of a pain, but you know your family will be safe. I view friends and family on the same level as most restaurants now – they don’t get cross contamination and I’m not willing to risk it anymore.

    So fix your own food or have your family over next time and then you have all the food safe.

    Reply
  6. 6

    Tracey

    I’m appauled that you feel your mother is not supportive. I’m very sorry for you.

    I am someone who keeps a very allergy-friendly home, my son is a celiac with soya, egg, and dairy sensitivies. So keep this in mind when you read my next paragraph: I know how hard it is to visit family, go to restaurants, travel and attend family events. My family of 5 adheres to the gluten, dairy, egg and soya free diet as we think we are all healthier that way and we are pretty sure the rest of us are celiac, or at least gluten sensitive as well. We bring our own food everywhere and never trust anyone else’s food.

    I myself have anaphylaxis to nuts. So if I am in small room and someone else is eating nuts, the smell causes me hives and itching, dizziness and nausea, sometimes with vomitting. If I eat nuts, I risk death within minutes. If I make it to the hospital in time, I will have eyes swollen shut for a week and be on steriods for a week or more to reduce the swelling and I will be hospitalized for a day or more. With each exposure to nuts, I increase my subsequent reactions.

    I don’t know the specifics of your brother’s family’s nut allergy, but as a hostess, I’m sure your mother did not want to see anyone die as a result of having something tasty that contains nuts be on view for what could be small children who perhaps don’t fully understand the nature of their allergy. In fairness to your mother and your brother, nut allergies can be extremely serious. I know celiacs disease is serious, and I know consuming gluten leads to a shorter life span, but since we don’t risk immediate death by gluten, it’s not the same thing at all.

    Reply
  7. 7

    Eliza

    Don’t take stuff from people about being self diagnosed. I get it too! People are mean, I struggled my whole life with classic symptoms even the rash. I was unable to get doctors to listen to me and was gluten free for six months before I had my endo/coloscopy. The doc that did my test was a real A-Hole, I don’t trust him at all. He was sexist and said women have gas because they diet and eat salads and that is why I have stomach problems, I told him someone who is sick all the time does not have the privilege of worrying about trying to diet also. After my coloscopy they tried to force me to eat crackers to help pass the gas from the test, I refused, he said women are so shy just pass gas, i told him never pass gas that way, my body does not work like that, I went home in terrible pain until I burped it out. Anyway he said it would not matter I was already gluten free fr 6 months prior, that i would always test positive if I had celiac. After the test he said I did not have any visual evidence of problems, now of course I know there are other tests that can be done, like blood and biopsies. But due to the fact I have a severe “I am unable to leave the house” reaction to gluten, I am one who takes months to recover from one time, there is no way in H E Double Hockey Sticks I will ever intentionally ingest it to get tested so that other people can have satisfaction. I don’t need their acceptance because now I have life. People who have been confirmed should not look down on those who haven’t like they are more legit, my green diarrhea, searing rash, and 7 months looking prego belly are evidence enough for ME!

    Reply
  8. 8

    Else

    To restore everyone’s faith in humanity, here’s a positive story. We went to a friend’s house for dinner this past weekend. Normally they cook everything from scratch and keep things safe for me (e.g. cooking on tinfoil on the BBQ, using separate utensils, always having me double check ingredients). Well I guess it was a busy week and instead of making burgers from scratch they bought pre-made from the store. It was questionable whether they were gluten free and I said I’d be fine with salad (since they always take such good care of me I cut them slack – normally I’m not fine with salad!). They pretended they’d meant to buy chicken all along but forgot, and immediately ran out to the store to get chicken!! And gluten free bbq sauce. There are some good people out there!

    Reply
    1. 8.1

      The Gluten Dude

      There are LOTS of good people out there Else…absolutely.

      Reply
  9. 9

    Kristin

    Believe me, I have been there! For years, my mom made me bring my own food to all family gatherings. She didn’t want to deal with my “diet”. Early on in my diagnosis 10 years ago, I didn’t want to cook because I felt like I was already putting too much energy into what I could… or more importantly couldn’t eat… and I just didn’t want to deal with it because it made me so depressed. I don’t know how many times I’d pop in a gluten-free microwave meal – while my family ate a home cooked meal (even including holidays!). Anyway, it was even more frustrating because my mom has always bent over backwards to accommodate my brother’s food allergies (dairy, eggs, chocolate, nuts). I guess avoiding gluten for her was just taking it one step too far.

    I have to give her credit that she has been trying more in the past few years (although, she still bought me a birthday cake last year that I couldn’t even eat!!) However, to this day she always considers my brother’s food allergies first before anything to do with my gluten-free diet. I absolutely understand that some allergies are life-threatening (including my own allergy to beef and pinto beans which cause an anaphylaxis response) but my brother’s food allergies only give him an itchy throat. Why that’s more important than my gluten-free diet – I will never understand.

    Reply
  10. 10

    Williamina

    I was very lucky to have a very supportive family and husband when I self diagnosed myself with my wheat allergy. According to the doctors I swell,vomit and choke over nothing at all…… sound familiar?

    I even noticed local businesses that supported gluten free, my friends and family all know the “safe” places!
    I also bring my own food to family functions, even though my family is very accommodating, It’s nice not to have them worry if what they are serving will land me in the E.R.

    The one thing that really gets my goat was getting my hair done at a local chain salon, I let the hair dresser know that I get horrid rashes from anything with wheat in it, the manager chimed in “yeah, because your scalp can have a gluten intolerance” Needless to say I won’t be going there again!

    I would like to thank everyone for sharing your stories, I dont feel so alone now!

    Reply
    1. 10.1

      Katelyn B

      My husband also has serious skin reactions to anything with wheat in it. People look at me like I just puked out a unicorn when I try to explain that you can have a wheat allergy and CD. They aren’t mutually exclusive. Hang in there!

      Reply
  11. 11

    Aloha Julie

    I am in a mood, I’m listening to Otis Redding, “A change is Gonna Come”.

    And the same song, also by Sam Cooke. I think us celiacs can relate and sing the blues, and we are qualified to do so.

    Just listening to music.

    I think we could change the lyrics without disrespect.

    Reply
  12. 12

    Jodi

    thank you all for your kind words and understanding. while this “rant” is purely emotional (and we all know emotions are not right or wrong, they just ARE), it feels good to be understood, affirmed and yes to be given another perspective. i do feel it necessary to say that all if you verbalized just about my entire thought process…even Tracey. there are many disfunctional layers to my relationship with my mother and my gf nutritional needs tap into many of them. the most we can do is accept people where they are at and move on. in the words of tenth avenue north “oh, Father give me grace to forgive them, for they don’t know what they are doing”
    i am spending the day with and awesoe friend and her family who is very accomodating to our diet. i will concentrate on the blessings of good friends today. :-)

    Reply
    1. 12.1

      IrishHeart

      Jodi said (so wisely):
      “I am spending the day with and awesoe friend and her family who is very accomodating to our diet. i will concentrate on the blessings of good friends today”

      That’s the way to live anyway—whether one is a celiac (or has any food allergies or intolerances) or not.

      Surround yourself with loving, non-judgmental and FUN people! :)
      Have a great day, Jodi!

      and to GD, Happy 4th of July– to you, your family and to ALL the gang who follows you here!

      Cheers all, IH

      Reply
      1. 12.1.1

        Katelyn B

        My celiac husband’s “gluten intolerant” mother WILL NOT STOP trying to get me to feed him “a slice or two” or Dave’s Killer Bread because “it doesn’t make her sick, so he’ll probably be fine too.” I feel like every bit of animosity I feel towards her is because of her attitudes about GF and CD. I mean, obviously *my* genetics didn’t do this to him, but I’m the only one who seems to grasp the gravity of what this disease has done to him in the 27 years he was undiagnosed and untreated and just always sick with “no explanantion,” even as she was cutting gluten out of her own diet. (As I type this, I am near tears because it rubs me in such a wrong way).

        Reply
        1. 12.1.1.1

          Gluten Dude

          Rubs me wrong too. So sad.

          Reply
  13. 13

    Donna T

    I have a vegetarian d-in-law whom I accommodate when she visits – I make extra sides for her or make a vegetarian version if possible. She had an open house and there was not a carrot stick or nut on her table – it was all wheat based. I was very hurt. It is different when it is a family member – you don’t expect your friends to go out of their way but you do expect family to think of you. Oddly, friends are the ones who come through and surprise you with something from the GF bakery or store. Last night my friend made GF Rice Krispy treats for me on her dessert table. I always bring my food or have back-up snacks in my purse. It’s not the food, it is the thoughtlessness of family. Friends can get away with it, not family.

    Reply
    1. 13.1

      Laura Hopkins

      I feel related to this story and I agree 100% you expect a bit more from family than what they actually give sometimes.

      Reply
  14. 14

    Donna DDV

    I understand the need to rant. I’ve done more than my fair share.

    But, choosing to NOT attend the function is only hurting you and your family. I suggest you pack the best dang picnic for your family and enjoy the day.

    Reply
  15. 15

    Wholesome Chow

    Wow! What a great discussion happening here on this post! I love hearing other people’s opinions on the GF and allergy matter. My two sense would be this…

    Everyone is trying to do the best they can with the information theyhave on hand. Have patience for those who do not understand your strife, and make sure to have patience when they come to you with their ailments. It IS a bummer when someone is not sensitive to your needs though.

    I have been a vegetarian for over 22 years, and although I do not have food allergies, I do understand what it feels like to enter a social situation and be unable (or in my case unwilling) to eat what is offered. I always make sure to eat beforehand and attend events for the social aspect if necessary. Going to a BBQ, or the like, can still be a fun event without part taking in the food :)

    Anyways, check out my business, Wholesome Chow. We offer Certified Gluten Free, Organic, Non-GMO and Vegan (no eggs or dairy required) Baking Mixes – http://www.WholesomeChow.com. All our products are produced in a 100% dedicated facility free from Gluten, Wheat, Peanuts, tree Nuts, Dairy and Eggs.

    Thanks for letting me put my two sense in!

    Reply
  16. 16

    AJ

    I have to chime in here.

    At this point, I would be labelled ‘self-diagnosed’ also. I have no medical insurance but I do have a paying job that keeps me off ‘the dole’. I’m the epitome of The Working Poor in America.

    I cannot afford insurance and I cannot afford medical visits. In fact, I’ve been diagnosed with hypothyroidism since 1999 and I’ve only been on medication for it for only four random years out of the last 13, because of no insurance.

    What I know is that over the years my reaction to eating bread (and I thought it was only bread because I was completely ignorant on what the triggers are) has gotten worse and worse. The pain in my bones made me think I had bone cancer for the last two years. Un-diagnosed bone cancer and no treatment in sight. That is a scary road to look down, lemme tell ya.

    So, when I read here story after story after story after STORY of folks that knew in their guts (no pun intended) that something was very wrong with them and no doctor was helping them . . .

    I wonder why everyone is still so adamant to only believe each other only when a DOCTOR says we have it.

    If I don’t have GI (at the least) or CD (at the worst) (and seriously, they both suck a LOT so who cares which one anyway) then I have whatever That Thing is that is exactly like GI or CD without it being either one of those things.

    I can only hope to dream to be rich enough one day to have an extra $50,000 laying around to see a doctor and be potentially mis-diagnosed and erroneously treated, like everyone else, to give my gut belief validity in people’s eyes.

    Being too poor for medical help SUCKS.

    And in the spirit of The Gluten Dude’s rants, I’ve said it and now I have to stop dwelling on it.

    Reply
    1. 16.1

      The Gluten Dude

      Well said AJ. Thanks for venting.

      Reply
  17. 17

    A. Orr

    I have enjoyed reading these posts and feel “at home” here and also the aforementioned “understood” without criticism , doubt or judgment.
    I have a relentlessly critical Mother in-law and would like to print out a short but informative description of gluten intolerance and the common struggles that are encountered ie: family gatherings, cross-contamination, symptoms with minute amounts of ingested gluten, and what that means on a day to day for the person trying to navigate and stay healthy. I would write this myself but feel as though it would be best received printed from a trusted source of some kind. Any suggestions would be appreciated. Thanks!

    Reply
    1. 17.1

      The Gluten Dude

      I don’t know of any printed items off hand. My suggestion: take what you can from this site and write it up. Or simply send her a link to the site and let her educate herself a bit.

      Reply
  18. 18

    Christine

    Self-diagnosis is a concept I cannot at all understand. I think it is a lot of why my disease is not taken seriously and why I continue to get eye-rolls from waiters and people even when I am discrete and try my best to be gracious while also communicating the seriousness of my dietary request. No one would NOT get tested for cancer, or diabetes. For credibility sake, and for the seriousness of my disease, Gluten Dude, please reconsider posting self-diagnosed posts.

    Reply
  19. 19

    Mary K

    I have no problem with people who are self diagnosed as long as they have some evidence to back it up. I recently met a woman at a family function who was “gluten intolerant” and she said that now she reacts within minutes of eating anything gluten. She was eating a gluten filled trifle when she said it.
    Gluten intolerance and celiac disease is a serious disease. It just annoys me when people use it as a fad diet.

    Reply
  20. 20

    Jennifer Cupp

    Also, especially if family is a bunch of nay-sayers, it’s not necessary to detail the diagnosis. Say there is celiac, and then decline to be put through an interrogation. I avoid social situations too, but mainly because I’m tired of explaining and explaining. One of the hardest is, my husband and I don’t drink alcohol anymore not as a recovery thing but because of celiac and IBS (no, I am not going to tell you how we were diagnosed!) and we don’t need the hassle of trying to process alcohol in our bodies. But the other adults cannot wrap their minds around the not-drinking thing – even 5 years later. Maybe they can’t remember it, because they’re always drinking when they see us?

    Reply
  21. 21

    Katie

    Ummmm what is a self diagnosed celiac? Maybe I don’t know that much about it since I’ve only known about it for 3 years, but still. This reminds me of people saying they’re “a little bit celiac”. You can have a sensitivity, but celiac is an actual disease; it’s the real thing. You can’t have a “little bit” of cancer, or autism, or diabetes. I’m ranting now. I don’t know all of the facts, so I’m trying to understand. How does one diagnose themselves and still say that they are a celiac with all the same conviction as someone who has medical proof?

    Reply
  22. 22

    Eli

    A person does not have to experience anaphylaxis to have an allergy or reaction to something. I have PCOS and have been diagnosed with insulin resistance. I looked into the effects of gluten on the body and mentioned the potential for gluten intolerance to my DR. In his infinite wisdom he says, you don’t exhibit signs of a iliac and it is not related to PCOS. Mind you there are several collegiate case studies proving otherwise. Don’t blindly trust a Dr because if you didn’t know……. They work for a paycheck too! Your sickness guaranties they will have recurring business, steady revenue, and there is no impotence to make you better just throw a bandage over the problem and push you out the door. Yes I am miffed by the medical fields general disregard for true permanent results and those who blindly support individual ignorance. No wonder the original story had such a bad out come. I would have done the same thing.

    Reply
  23. 23

    Jon

    Thanks for this blog Dude. I am a very laid back guy and have been very happy that going gluten free resolved my problems but a couple of nights ago I met a woman that just pissed me off so much and I want to rant.
    She said she worked in the “medical field” and I mentioned I was diagnosed with gastroparesis and suffered many years on liquid diets while still constantly having times where I would get sick. I told her that my doctor suggested I cut out gluten for a while and see if it helps. I refused to pay for more medical tests because at the time I didn’t have insurance and quite frankly after nearly six years of hospital visits and tests I just figured I would try the diet and see. Doctors were like 0/20 on their tests and suggestions so far.
    Going GF worked for me. My every other month of stomach flu like problems that could last days or weeks stopped after about six months of being gluten free.
    I could eat solid foods as well again. Which was a great relief.
    This woman then stops me and tells me she believes that Celiacs is only a fad. Not the people just doing it to lose weight or whatever. Celiacs itself.
    She said I probably just have Chrons disease and started naming off drugs I should be taking. I stopped her and said I was tested for Chrons years ago when it started and I don’t have Chrons.
    She then pointed at my drink and said “But you’re having gluten right now! Alcohol is gluten!” To which I replied “No, alcohol is not gluten.” She then said “But your gin is made from what?” And I replied “My Tito’s vodka is made from corn and liquor is distilled anyways.” (Didn’t want to get into how even though liquor is distilled some GF folks get sick on it)
    At that point she seemed flustered, stopped talking to me, and left.
    I can not understand why someone would try so hard to convince another person that their disease is a fad. Like I woke up one day and watched Oprah on TV say she lost weight going GF and I decided that would solve my gastroparesis.
    This woman seriously underestimates my passion for donuts. I reluctantly went GF with a mild amount of hope that I would get better. It’s been nearly four years of being GF and my flu like symptoms have reduced to maybe a couple times a year depending on how vigilant I am with eating. Cross contamination isn’t as bad for me every now and then but I cannot eat a substantial amount. Allowing cross contamination is probably why I still occasionally get sick.
    Also, going GF was so much better than taking a ton of medication constantly. I couldn’t even drive most days because many of the drugs caused severe drowsiness and one even caused severe depression. And all of the reactions to other things while taking the drugs. It was a nightmare.
    Not saying going GF is a walk in the park. Some of the worst times come from meeting people like this lady. It makes me want to just stop talking about being GF for good but that is impossible because I have to order food if I go out or go to friends to make sure I won’t get sick.
    Many of my friends have even asked me in the past why I don’t mention it to new people. I try to explain that it becomes exhausting after time and I don’t want pity or judgment. I just want to live a normal life like everyone else.
    Now that I am better off and have insurance I am considering having the genetic test done just to see. I’m not going back to gluten for the other test unless I feel like taking that risk. It’s out of the question now since I have a life and need to be active in it.
    What do you guys think? I was previously diagnosed with gastroparesis but never officially for Celiacs. I visited a GI doc a few years ago and she was sympathetic but also wanted to run more tests. I was willing but at the time I was new in the city and could not find someone to drive me and I really wasn’t enthusiastic about paying for another endoscopic test so I just let it sit but now I’m wondering if getting more proof I’m on the right track is better.
    Thanks for letting me rant. I’ve read many other posts and I feel for all of you. Especially the kids. This hit me hardest in my mid twenties and that was rough. I can’t imagine going through it along with growing up. That is a challenge all on its own.

    Reply

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