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39 Comments

  1. 1

    Kathryn

    Spot on, as usual GlutenDude. In my experience people refuse to consider the possibility until they, too, are REALLY sick!!

    Reply
  2. 2

    Musicmidget

    It’s been almost a year since my diagnosis. In that time, the most frustrating aspect of this disease has been trying to explain it to my family – let alone convince them to get tested. It’s very likely that my sister and my father both have it. My sister quietly listens to me when I talk about it then changes the subject. She recently sent me a link to the article about gluten sensitivity being fake. I’ve decided I’m not going to discuss it with her anymore. I can tell my dad believes it, since he watched his own father suffer and his side of the family has always had GI issues. But at almost 70 years old he is scared to make that drastic of a change to his lifestyle. If I hadn’t been scared to death myself last year, I probably wouldn’t have either. Everyone has to come to it in their own way. It hurts to think that the ones you love may have to suffer needlessly, but ultimately it’s up to them to take control of their health. All you can do is try to educate them about it, let them know the condition is genetic, and hope that they decide to be healthier. The rest is in their hands.

    Reply
  3. 3

    thetxlady

    I’m with GD. Bio dad died of intestinal cancer (though he was a festering a-hole, I don’t think that actually CAUSED his cancer). Mother has been diagnosed with IBS, diverticulitis, “stress hives”, & diabetes that responded so well to medication she’s off of it (& probably never needed the pills to start with). Brother says I’m “being a drama queen to get attention & not sick at all”.
    Anyone else wondering why i rarely go “home” & live 800 miles away? …didn’t think so.

    Yes losing family members is hard. Morons or not, they are how you came into being & naturally there is some chemical affection. Thing is the strength of conviction that makes this new life possible, came from somewhere. Stubborn is the #1 cause of death from fatal illness. Don’t misunderstand, I’m not saying stubborness CAUSES disease I’m saying being stubborn ignoring symptoms, arguing with those “finding fault” until its too late…is the cause of death.
    Many cancers can successfully be put into remission if caught early enough. Much like celiac’s cancer taking hold can be lessened with a healthy gluten free diet.
    In this one fact our detractors are correct: “a gluten free diet is a choice”. Yes, Its a choice to live, a choice to feel better, a choice to do whatever it takes to avoid cancer. The choice to die on pizza, hogies, donuts & beer when all facts point to someone having a serious treatable illness is the other option.
    Monica, give him the information & step back. Tell him it hurts you that he’s ignoring what could make him feel better & it will be too late when he has cancer from this. You want him around for a long time (to see grandkids, wedding, lake cottage that’s special insert quality guilt here) & you trust he knows what hes doing. Then leave it alone!!
    The stress of “preventing” someone elses illness, won’t help your own health!! Its that whole lead the horse to water thing. Roping the horse, dragging it kicking & screaming into a trailer, trailering it to the water hole (doctor) forcing it through the gate…still won’t make it drink. All that pain, blood & effort just makes you feel better about trying to save its life…it doesn’t ensure the horse won’t still die from terminal stubborness.

    Reply
  4. 4

    Ken

    You’re right. I think fear comes into play as well (although some folks would never admit that). I know it does with one family member who just got diagnosed with a hereditary kidney condition.

    My brothers and father didn’t hesitate to get tested. But I just found out yesterday that my brother who had a positive blood test never got a biopsy.

    Reply
    1. 4.1

      Ken

      Oh, and LET’S GO RANGERS!

      Reply
  5. 5

    Jane

    I have the same problem with my mum. She has a few coeliac symptoms (lactose intolerance, low iron, another autoimmune disease, bad joints), but refuses to get tested because she doesn’t want to change the way she eats. I’ve suggested that she just get tested and then she can do what she wants with the results.
    The weird thing is that my mum isn’t usually that type of person: stubborn to the point of stupidity. She’s going on a big overseas trip soon, so I might have a go at convincing her again when she gets back.

    Reply
  6. 6

    Mary

    My family understands I have a medical necessity in regards to not eating gluten but they still don’t get it. Two have been blood tested and don’t have it. The others bury their heads in the sand,including one brother who has serious digestion issues. At family functions I still get the occasional ” go on, have a bit,it won’t hurt you ” grrrrrr!

    Reply
    1. 6.1

      Gayle Wagler

      My sister was tested by blood test & was negative for celiac but when tested with a special celiac biopsy she tested positive.

      Reply
  7. 7

    Themanynames

    I found nagging to be very successful in my case.

    I have been suffering from digestion issues for ten plus years and just finally got the courage to get the blood test last night. The past year, my issues have gotten worse, to the point where blinding pain has resulted in my boyfriend almost taking me to the ER.

    My sisters nagging, as well as my boyfriends nagging, finally drove me crazy enough to get tested. Whether or not I have it, we will see. But the idea of getting tested scared the crap out of me, and without their nagging, I likely would have waited longer. Quite honestly, when I saw the title of this, I almost thought the question was sent by my sister or boyfriend, until I read the details.

    Reply
  8. 8

    Claudia

    I don’t think that nagging helps people that are stubborn. The only thing one can do is say your piece and leave it at that. Some people are just plain proud. There is also the issue that some may believe the media hype that we are just “picky” or “weird” blah blah blah. No one wants to be associated with a bunch of picky weirdos. My family understands and at least takes me seriously. The only thing that has changed is that I can no longer “break bread” like I used to. I am the same core person I have always been—just with a better measure of health. P. S.: I have always been a little weird lol.

    Reply
  9. 9

    Terry J. Wood

    She might consider baking him some of Jules Shepard’s fresh gluten free bread. You don’t have to tell him that it’s gluten free until after he’s tried it. Then, when he’s smitten with the taste, tell it’s gluten free. And let him know that eating gluten free isn’t that bad, especially when eating this way gets rid of the pain associated with celiac disease. Then perhaps he’d consider getting tested.

    Reply
    1. 9.1

      Mariann

      GD you are spot on with your comments! I have been CD symptomatic since childhhod – undiagnosed for 4 decades – finally healed with my dedicated diet – and not one of my family members will acknowledge this condition either by being tested or by my dietary adjustments – and I am a Chef who specializes in gluten – free dishes! It is very frustrating and irritating!

      Reply
  10. 10

    Nancy in WA

    Hey Monica…don’t feel alone sweetie, family refusing to get tested is not uncommon in here. I’ve been trying to get both my parents tested (since I got the gene from only one contributor), and both have stubbornly resisted. Both my parents have had intestinal issues and my father has had skin issues and mental problems all of his life, and my mother has ITP and skin issues. My mother’s GP doc told her that Celiac wasn’t hereditary and there was no need for her to get tested so she’s refusing…and mother dearest even took it one step further to tell me that I was no longer welcome in her home because she “didn’t want to be responsible if I got sick eating something at her house”. Because my mother’s doctor told her it wasn’t hereditary, my siblings are now refusing to get tested…hell even two of my own adult children have been resisting getting tested, even though both are showing signs of having CD. I think with my parents, no one wants to believe the crappy genes could come from their side of the family. I totally envy people who have such supportive families, they should count their blessings.

    Reply
  11. 11

    KateJ

    I totally agree with GD.
    I have been diagnosed for over five years now. I suggested my Mum and brother get tested.
    My brother has no symptoms, but has said that if he got any, he would get tested.
    My Mum has lots of symptoms, but has flatly refused to get tested. I suppose that if she were diagnosed, she would feel she should follow a gluten free diet (bear with me here…) but she lives with my stepdad, who is firmly convinced that I am an attention seeking fussy eater. I feel that she puts her own health second to Dad’s prejudices, but she is an adult, and it’s up to her, not me.
    My son has no symptoms, but we had him tested and he’s clear. But better some blood tests than years of wondering.

    Reply
    1. 11.1

      Gluten Dude

      “…but she lives with my stepdad, who is firmly convinced that I am an attention seeking fussy eater.”

      Sigh. Sorry to hear. Sounds like a real charmer.

      Reply
      1. 11.1.1

        KateJ

        We get on fine as long as we don’t spend more than 10 minutes a month in each other’s company.
        I put up with his nonsense for Mum’s sake, but avoid him as much as possible.

        Reply
  12. 12

    Gloria @ glutenfreepoodlehome

    The angriest celiac I ever met, and I’ve met a few, was a woman whose mother and sister were diagnosed with celiac. The other adlut children were tested and this lady was positive for celiac. She had no symptoms but when on the diet. She called gluten poison and stayed GF but man was she pissed off about it. I guess people who are really sick, go GF and feel better have a better time adjusting. We should all alert our first degree relatives and then let it go. The ball is in their court.

    Reply
  13. 13

    IrishHeart

    Steven Wright said “You can lead the horse to the water…but
    you can’t hold his head under.” :)

    My best advice? Give him the information and let it be. It IS genetic and if he can’t see the connection between his symptoms and the symptoms of celiac, he’s just in denial. His doctor should have tested him right away.

    I have tried valiantly to get my family members tested. ( Perfect strangers on the internet think my advice is worth something, but my family does not heed my advice at all.) This makes me sad and frustrated because I know full well they will only acquire more health problems down the road.

    The only one who listened to me was my mother. She skipped testing and went right to the GF diet with her doc’s blessing. She is a fiesty 87, feels great…… and will outlive us all..

    My Dad surely had this thing as all his symptoms were celiac- related and if we had known what we were dealing with back then, my mother would have put him on a G F diet so fast, he would not even have had the time to say “okay, what’s gluten now”? In other words, my Dad would have done ANYTHING to have stopped the GI pain he suffered all his life, the chronic anemia that required blood transfusions, the itching, and the dialysis machine that was finally needed to keep him alive….. and he’d have done it gladly to have stayed around a few more years.
    But my large extended family?
    They all have the symptoms and the accompanying conditions.
    They are not interested in being tested.
    They ignored my pleas, my well-intentioned letters and the occasional articles I send to them.
    They think I am the only one with CD.
    They think their symptoms are not “bad enough”.
    One of them finally said to me firmly “thanks for your concern, but please do not mention it again.” When she is hooked up to a dialysis machine in a few years,because it is inevitable given the medical conditions she has, I’ll have to bite my tongue clear through before saying something as obnoxious as “I told you so”.

    Reply
    1. 13.1

      Gluten Dude

      One time, the police stopped me for speeding, and they said, “Don’t you know the speed limit is 55 miles an hour?” I said, “Yeah, I know, but I wasn’t gonna be out that long.”

      I love Steven Wright.

      Reply
      1. 13.1.1

        IrishHeart

        “I intend to live forever.
        So far, so good”.

        –SW

        Reply
  14. 14

    Brenda

    I am so sad that my adult children refuse to be tested, even though they both have GI issues and other symptoms of celiac disease. My diagnosis was a surprise, as I had no GI issues, but some abnormal blood tests. Their reasons? It’s not convenient for them to switch to GF, they love bread, and all the reasons everyone else has posted. Why am I so sad? Other than the possible damage to their bodies if they do have CD, they are both medical professionals and should know better!

    Reply
  15. 15

    Pals Gallon

    One of the members actually spoke. I did not see anyone ask about getting rid of Gluten Free for FODMAP though http://www.youtube.com/watch?v=DD0Dnki86sI

    Reply
  16. 16

    IrishHeart

    Speaking of heads in the sand, I just read Erika’s article
    RE: Postino’s “new GF bruschetta”

    http://celiacandthebeast.com/2014/05/problem-postinos-new-gluten-free-bruschetta/#comment-14233

    and I do not have access to your FB account, so I will post my thoughts about that here.

    She ended the article with:

    “So I ask you – who is this bread really for? ”

    That’s the million dollar question.

    Beats the crap out of me. It certainly isn’t for us.

    If it makes you feel better, I tried valiantly to help a local cafe here. They have GF items on their menu and I asked what I thought were all the ‘right questions”. but, I kept getting progressive symptoms every time I ate there. Finally figured it out. The 2 toasters they have–yeah, well one is not dedicated as I “assumed”. the GF coffeecake–not separate baking supplies.The burger? made on the same grill with pancakes. I thought it was a separate pan. They did not outright lie, but they did not elaborate when I asked.
    Pissed me off royally, but I was gracious.
    I offered to come and show them the small steps they could take to make it truly GF. I gave them the GIG guidelines. I never heard from them. They still have a GF menu but I am not a customer anymore and I gave them a less-than-stellar review on FMGF

    Gluten free ingredients is not the same as gluten free preparation.

    They just do not acknowledge the CC issue and they refuse to spend the money to
    have dedicated sections, That’s fine, but don’t tell me it’s GF. All can think of is that line
    “don’t pee on my leg and tell me it’s raining”….

    Reply
    1. 16.1

      Ken

      But we’re overreacting and have no sense of humor.

      Reply
      1. 16.1.1

        IrishHeart

        yes, Ken we are all humorless hotheads. :)

        Reply
    2. 16.2

      Gluten Dude

      This one really bugged me.

      Reply
  17. 17

    Molly (Based on a Sprue Story)

    I feel ya. My dad is the one member of my immediate family who has not and probably will never get tested for celiac disease, even though both my sister and I now know we have it. He’s had this weird burping thing for several years now (he just burps, almost like hiccups in their regularity, way more often than is normal) and I know for a fact he’s had other digestive problems that I think he’s just used to at this point. But he still insists he “has no symptoms.” After a year and a half, I’ve decided to just not push it anymore. We used to nag him all the time about losing weight, playing the “we want you to be around for your grandkids” card and everything, and he never did until he decided for himself he wanted to. That’s just the way it is.

    Reply
    1. 17.1

      John

      I didn’t really have any symptoms either, until after already having made several blood donations, they suddenly rejected me at the clinic for, to my surprise, low hemoglobin. I almost certainly never would have known otherwise. After six months of various pills, examinations and further blood testing they finally traced it back to iron malabsorption… on account of celiac.

      I’ve told this story to others tons of times and I always like to end it by remarking that the life I saved by donating blood was probably… my own.

      Reply
  18. 18

    Jen

    I feel blessed that my supports me fully in being GF w/CD. On the other hand nobody will get tested, my Mom agrees that her Mom most likely had it and on her own came to her Dad too, yet somehow it magically skipped her to me. When we talk its whole wheat this and whole wheat that – uggghhh
    When I emailed her brother about it in hopes if he got tested and negative hopefully not passed to my cousins – no response
    I emailed my cousins and their wives – the one I would bet was least likely to have it responded with more questions then was never brought up after I responded.

    Reply
  19. 19

    Gemini

    Here is my story of family denial…..

    My father’s wife recently passed away very suddenly and my father is not well….you guessed it, undiagnosed Celiac. He is presenting just like I did and I am a classic case of Celiac, which always made me wonder what the hell the doctors missed. I could be the National Poster Adult for it.

    My father has dementia also (wonder what caused that?) and because he is stressed over his wife’s death, his Celiac symptoms have been exacerbated. Milk is becoming a problem and you all know why. But he has taken to eating lots of ice cream lately and everyone is complying with his wishes to keep him happy. So…after cleaning up his sheets and bathroom floor from accidents last week, I ordered my siblings to start giving him Lactaid milk, probiotics and Lactaid everything else, in the hope that it will help a bit because NO ONE will put him on a gf diet or get him tested. Yes, I know, they are thinking he has dementia…why get him tested? They do have a point because he also has serious heart problems that will kill him soon anyway but REALLY? Does a person have to go to his deathbed with diarrhea everyday and lose their dignity? BTW…my 2 sisters believe me but my brother, who is guardian, just cannot quite get it through his head this is a problem. “But he never had this problem before” says he. WHAT????? Dad has been living in the bathroom for the past 5 years or more! I should mention that my brother (who I do love and get along with fine) has Type 1 diabetes and has had extreme stomach problems for most of his life. But….not to worry…they have pills for that. I have nominated my beloved brother for “Denialist of the Year” award!

    This is what you are up against so don’t beat your head against the wall trying because only you will end up crazy from it.

    Hi, IrishHeart! I am sorry I was unable to call you this week-end but I have been busy with Dad. I will try and connect this week-end…… : )

    Reply
    1. 19.1

      Gluten Dude

      Sorry to hear your family struggles Gemini. Hang in there. Hugs from the East Coast.

      Reply
    2. 19.2

      IrishHeart

      Gem, I know what you’re dealing with right now, so just know I send my love and support and when you have time, you know I’ll be here.
      Call anytime. Hang tough, girl. xxoo

      Reply
    3. 19.3

      Hap

      Gemini

      Hope your, your Dad’s and your family’s circumstances become easier to manage soon and that you daily gather the strength necessary to conquer these times. You know there is strength in numbers and we care for and support you.

      Reply
      1. 19.3.1

        Gemini

        Hap…the only thing which has kept me sane at times like these is the Celiac community….both on-line and in person. I find that once you start hanging around and talking to people who do not eat gluten, it’s an amazing thing what a clear mind is. I am really doing OK with this because I have been gf for many years and have come to terms with the denial of my whole family. I learned I cannot save everyone but those who want our advice will ask and listen. It is sad about my father, though, because he has dementia, most likely from all that gluten he ingests, and he just does not know any better. It’s like seeing a 3 year old child eat gluten when you know they shouldn’t. Too young/old and confused to understand that and you can’t stop it. Not a good way to live out your last months or years, is it?

        Thanks for your kind words! It’s too bad more of us don’t run the hospitals and nursing homes because our elderly would be much better off! Many of their problems would probably go into remission or disappear entirely.

        Reply
        1. 19.3.1.1

          Hap

          Gemini

          You are so right – I agree with everything you said. The main reason I replied now is with hope that maybe your brother may consider my comments in addition to your own for the benefit of your Dad (and your brother), who you obviously love each very much.

          I’ve practiced law for 30 yrs and served as guardian for more than a few adults who have trusted their health and their lives to my deep concern for their well being (physically, spiritually & financially).

          Now that I’ve been GF for 18 months and my Mom for 7 months, it is still mind boggling to me that not eating wheat is curing each of us from cancer and a myriad of related complications. I’ve made my living with my mind & it is undisputedable how much gluten affected my brain (as well as my skin, my esophagus, my intestines, my stomach, etc., etc). Your brother could probably help make your Dad’s life much easier relatively quickly even at his advanced stage by stopping his gluten ingestion immediately. As my Mom found out, the inflammation in her body subsided rapidly after stopping eating gluten. It probably can’t hurt at this point and could help tremendously – a decision “qualified” medical professionals could help you make. The process is time consuming, but may be so very effective and beneficial for those we love. My prior posts relate how much time I’ve devoted to my own parent’s well being and I fully understand the challenge that lays ahead for your family. I am vocal in my gratitude for Jennifer and GDude (and now IH) because their advocacy really and truly began the process of saving my Mom’s and my life and has made a tremendous difference in the quality of our daily lives. How can you say “Thanks” enough for that kind of gift?

          I will be glad to talk with your brother (free of any charges) and GDude can give you my email address if you need me.

          With my best personal wishes for your family,

          Hap

          Reply
  20. 20

    Anna

    I completely understand how you feel, though my story is a little different. I haven’t been officially diagnosed with celiac, but I did have a positive blood test, and after a year gluten free I’m having much less problems than I used to be. I’m still not a hundred percent, but I’m feeling better.

    Part of me really wants to know though. I can’t bring myself to go back on gluten for the endoscopy; that would be missing too much school and work time that I can’t afford, but I would really like to know.

    I’ve been trying to convince my parents to get tested for awhile now, mostly because if one of them got a positive, that would help confirm my diagnosis. I thought my dad might have celiac. He hasn’t talked much about GI issues, but he does have a lot of other health issues, and massive malabsorption issues. His doctors assumed it was caused by liver disease, but even though his liver has regained normal function he can’t seem to gain any weight back. I tried to convince him to get the test, just out of curiosity, but he refused. He’s sixty-four, and in his mind he’s just too far gone for a dietary chance to be worth it. He already has diabetes and is on a low-sodium diet, he doesn’t want any more restrictions.

    And then my mom started to talk about stomach issues. She’d given me hell for awhile before my testing. I didn’t explain the full extent of the GI problems I was facing, I was embarrassed, and she would constantly give me hell for needing to go to the bathroom so often. Finally I explained how bad my stomach problems were, and she encouraged me to go to the doctor and demand every test available. Once I became aware of my gluten problems, she began to mention nonchalantly about having issues herself; the sudden need to go to the bathroom out of nowhere (not quite diarrhea, but still a problem), and abdominal pain. My main two issues. She also refuses the test though.

    I’ve tried to paint it in a way I thought would convince them; I told them that them taking the test would just help me confirm what was wrong with me. They didn’t have to commit to a new lifestyle or change their eating habits, I just wanted to know. It’s scary to find this information out though, especially if you’ve been living with it long enough it’s just normal life for you. Perhaps I should be happy my symptoms came on suddenly, out of nowhere, and I was forced to seek a diagnosis to try to achieve my previous way of life.

    All you can worry about is yourself, ultimately, and hope that one day they’ll start worrying about their own health as well.

    Reply
    1. 20.1

      Kelli

      Im a bit the same where i dont know for sure if its celiac… My aunt and uncle have it, and i had been really sick for awhile not knowing what was wrong… I didnt have all the facts about gluten and celiac, but i was determined to feel better, so i cut out the gluten…. Its been two years now and im amazed at the change… But terrified to get tested. I get very very sick when there is any cross contamination, so i cant imagine purposely eating full on gluten to get tested…. Any advice?

      Btw, awesome site. Love the reviews, rants, everything! Its nice to find others who “get” it

      Reply
  21. 21

    Emmalee

    I was diagnosed in 1991 at 34 years of age. One antibody test then negative but positive small intestine biopsy. No one had to tell me more than once to never eat gluten – I was almost out of nursing school. So, I have been able to avoid with no temptation. I was asymptomatic which made it aggravating initially but then met who is now a close friend at a support group meeting.

    Reply
  22. 22

    Dee

    I do not understand the resistance (by SO many) to being tested for CD. Many of my family members refuse to be tested, angrily stating, “I DON’T HAVE CELIAC!”
    Me: “how do you know? You have many symptoms.”
    Them: “I don’t have it, back off! I don’t want you pestering me!” “If you want to be on the GF fad bandwagon go right ahead . . .”
    Me: Silent, frustrated, and internally angry.

    Odd thing is, they go to the doc for everything under the sun, they take pills for everything, but won’t get tested for CD. I’d like to know the psychology of it all.

    Reply

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