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47 Comments

  1. 1

    Maggie

    Yeah, I lived through something similar. It was “all in my head” (this was 10ish years ago) and I was making it up. School authorities threatened to take my siblings and I from my parents because I was lying about my disease. My parents retaliated. I was dragged to doctors who only made me worse, not better, over and over. My favorite? I was about ten or twelve or somewhere in there, told I must have been a “bad girl” and gotten STDs or gotten myself pregnant. Gluten got me kicked out of middle school and I never went back. Far as I know, all my teachers and classmates still think I was a sexually active ten or twelve year old and dropped out of school voluntarily when I got “pregnant” (aka had Celiac).

    So sorry to hear you were spanked by your parents. Mine at least resorted to locking me in my room and taking me out of school instead of hitting me.

    Reply
  2. 2

    Gillian

    I can relate. I remember being about 6 years old and being forced to eat the big doughy bun of my hotdog even though my stomach was hurting. Of course I threw up which then earned me a slap across the back of the head and some yelling. Never a good relationship with my parents either.

    Reply
  3. 3

    Casey

    I won’t go into details, but this just about exactly sums up my experiences growing up as well. Very violent parents (and not that many years ago), and ongoing health issues that were clearly gluten related. I hope no one ever has to put up with this.

    Reply
  4. 4

    IrishHeart

    This is just heartbreaking to read again. As I said to the writer who posted this story previously, I am sorry to hear this. I cannot imagine spanking a child who is sick, but if they thought you were just being “difficult”, they did what most stressed out and unenlightened parents resort to out of frustration. I imagine that’s still going on in homes right now. :( at this very minute.

    By sharing your story, you may well have opened some eyes this morning. Thank you. May I share something with you too?

    My mother recently said she was sorry that she told me my leg pains when I was little were “just growing pains” –because that’s what her mother told her. My mom was suffering from GI stuff all that time, too–poor thing–but she thought that was “just the way it is”. (At 86, off gluten after my DX, she feels the best she has in years).

    She said she never knew why I was always pushing food around my plate or getting “stomach bugs” (and frankly, I heard “tough it out” a few times and was sent to school anyway) but I was never spanked or abused or made to feel as if I were not being heard. I do think they maybe thought me “dramatic” at times, and I was often told I was “too sensitive” when I would get weepy, but they never got mad at me for it. Fortunately, I had a very sympathetic Dad (who had gut issues and anemia all his life).who gave good hugs.

    Often, I hear similar stories like yours from other celiacs/NCGS and I think… the parents are also probably having symptoms or are ill-tempered from gluten themselves…! and have no idea why they are so easily angered. It’s a vicious cycle.

    This does NOT justify abusing a child in any way, of course, but it may be part of the problem..

    I send you all–big giant cyberhugs. .

    Reply
  5. 5

    thetxlady

    So you met my parents? HA
    I had several painful leg surgeries over the years & they always took bone biopsies to determin the cause of painful leg cramps (too low a potassium/sodium yet another cool CD side effect). Was diagnosed with IBS, colitis, gird & my personal favorite stress ULCERS IN A 7 YEAR OLD!!!
    My parents reaction to not wanting to eat was to heap more on the plate then make me sit there until I was done (any wonder I hate sitting at tables for meals). This was “cured” when mom gave the family botulism beans (home cooked no less) where I was forced to consume half the pot then projectile vomited all over dad, mom, the wall, ceiling, table & carpet. Damn karma feels good, there was a odd “film” on the good china that had to be washed off that year, smelled faintly of bean.
    I read an online article not too long ago I wish I had saved a link to that reports childhood stress/anxiety breaks down the immune system CAUSING celiac, IBS, chrones & the like from the frequent injection of additional acids to the system. It went on to claim that fat children more often are later diagnosed with serious digestive disorders related to stress. While I don’t recall a conclusion on how to eliminate this stress I did find the link to bullying & child abuse survivors alarmingly high.
    While do sometimes enjoy blaming my mother for many things, causing my celiac with HER “weak constitution” & lack of back bone seems very far fetched.

    Reply
  6. 6

    Sue in Alberta

    This is where we get to break that cycle.

    Unfortunately, so many of us went through childhood followed by decades of living with all of the side effects of this disease while being completely misunderstood or incorrectly diagnosed. To mistreat a child for ANY reason is NEVER right. This is where we can affect positive change. We live it so we have the ability to be empathetic whenever we encounter suffering. We know, without question, that very small amounts of lots of foods can result in sickness and pain.

    This has come up countless times in previous discussions where compassion and understanding go such a long way. Fingers crossed that this kind of abuse stops as more people are informed. Here’s hoping.

    Reply
  7. 7

    Ken

    I know that sympathy isn’t necessary here, but I’m giving it anyway. My mom suffered from everything I suffered with. She even apologized one day, saying “you’re sick because of me.” She got it, and she was patient with every sick day, every doctor, and every new symptom. Cancer tore her apart and she finally gave in 10 years ago. When I got my diagnosis, and I read up on what happens when it goes undiagnosed/untreated… Well 2 and 2 never came together so easily.

    Reply
  8. 8

    Shirley @ gfe & All Gluten-Free Desserts

    WOW. So incredibly sad. So unbelievable that this reader and so many commenting suffered that kind of abuse from their own parents and others. My heart goes out to all of these folks.

    Shirley

    Reply
  9. 9

    Donna

    Dear “Spanking”: I can totally relate to every–single–thing you said above!!!!! Being honest, I NEVER put the two together…that being spanking and my stomach issues. I had been spanked and spanked and spanked and here I am at 47 years old and it has finally clicked thanks to your email to GD!!!! WOW!
    I was “officially” diagnosed with Celiac Disease in 2009. I was obviously sick for a very long time before I got a diagnosis!!!! I have had stomach issues ever since I can remember…and that was a VERY–LONG–time ago!!!!!! I remember being so constipated as a child that (ok…I will not explain what was done, but let me tell you it wasn’t pleasant)!!!!! I am STILL constipated, but NOW I get the big D as well. So it’s one or the other. There is never, never, never a “normal” bowel movement. Ok, I can’t say that because I don’t really know what a normal one is!!!! :)
    I would get such stomach pains as a child that I would cry and cry and BEG not to go to school. So…I would get my ass whooped and either put on the bus or taken to my grandmothers house as she was my babysitter. My Momma would take me to the doctor and of course there was nothing wrong with me. They ALL thought that I just wanted to skip school! Come on—I was in kindergarten, first, second, third grade, etc. Do children that young even know what freaking skipping school is??????
    Ok…I won’t go on and on with this because I think I have made my point. Know that you are not alone–I finally know that “I” am not alone! So thank you so very much for sharing your story!!!!!

    Reply
  10. 10

    Kyle

    I remember before we found out our son had Celiac disease, he would resist eating his dinner. It was dinner every night that he would complaint his stomach hurt. Most of the time other than dinner he was a normal kid, running and playing. We would get so mad at him for not listening over and over again at dinner. I dont know if he ever got a spanking out of the deal, he has had some when we feel the need, but looking back its hard not to feel like a horrible person for not doing something sooner than we did. Its been a complete turn around now when he says his belly hurts, there is nothing I can do but try to feed him good, wholesome, gluten free foods and make him comfortable. And not gluten free substitutes, we have found that those can be just as bad sometimes. If your kid is complaining their stomach hurts, dont get mad and avoid the issue. Its likely something they are eating. The Whole 30 diet is a great elimination diet to try out. It may be 30 days of hard work cooking every meal and not eating out at all, but its well worth it in the long run. The faster you make them feel better the better you will feel.

    Reply
  11. 11

    Chloe

    I have a pretty stormy relationship (at best) with my family and whenever I felt sick when I was younger my complaints were generally met with hostility. I’ve mentioned here before how everyone trying to convince me “it was all in my head” culminated in me becoming anorexic and then bulimic. I was never spanked but the verbal abuse and shaming was there until I got a little older and began to stand up for myself. Eventually that hostility towards me became a bit more physical and one day my own Mother held me up against a wall by the throat because I dared speak up for myself. She even went into my school the day after and spoke to my head teacher about how “I had attacked her” and was a violent, troubled person. I think I was 14 when this happened. Things just kind of went on like that and the worst part for me was really the alienation.

    Most people know me as a very bubbly friendly person (albeit with anxiety issues) but I find it so hard to be around my family. It’s worse now that I have a little niece and am expected to ‘call a truce’ but I still feel really uncomfortable around them. There is a history of depression in my family and I understand that they are all probably dealing with gluten intolerance too which is making them a little crazy; but I still feel like they’ve stained my childhood.

    I think it’s easier for people when CD is diagnosed at a younger age and family rally around as opposed to ‘rallying against’. I wonder how many peoples lives have become pure torture because the ill-equipped medical professionals can’t give a proper diagnosis.

    Reply
  12. 12

    Laura

    I, too, was threatened, spanked, and slapped for my stomach issues. Having a phobia of needles, my parents threatened to take me to the hospital where they would poke me with a bunch of needles over and over again if I kept complaining. When I was 15, my parents accused me (the child who had never even held hands with a boy) of being pregnant. When they took me to the doctor, he found severe reflux and ulcers. I didn’t figure out the gluten thing until I figured it out for my own children. Now gluten-free, so many of my stomach issues have improved. If only parents listened to their children instead of dismissing their complaints. Why would a child make something up like that?

    I’m sorry that so many of you had to go through similar experiences.

    Reply
  13. 13

    Andrea F

    Wow. I wasn’t diagnosed until I was 47, but thankfully my parents never spanked me for being difficult, not eating, asking to please stop the car at the very next place so I could use the bathroom, etc.
    I remember my mom almost figuring it out – she would have me eat bacon and eggs for breakfast instead of my favorite french toast. The french toast was “too rich” for my little girl tummy. Eating always gave me a “sick tummy” with the big D, so crackers were a staple of my diet. Oh well. Life is so much better now. If I could only get mom to stop asking how the “diet” is working… It’s not a diet anymore. I just choose to not eat foods that disagree with my system – the same as anyone else with a lick of common sense!

    Reply
  14. 14

    Videophyle

    Oh my gosh I can’t believe someone has brought this up. In my case, my Dad used to say how lazy I was. I’m sure I was tired, and not having energy led to having this bad image of myself as lazy, and not having many friends at school because I couldn’t run around and play. Someone needs to publish about this, oh how I wish the doctors could see their way clear to screening children. Why won’t they do it????? Please somebody tell me why they won’t screen children. Is there any way the support groups could get behind screening and push for it the way they did the labeling laws? It’s time.

    Reply
    1. 14.1

      Gail

      I’m with you – wish we could get everyone screened starting at a young age. From what I understand, Italy does screen every child before the age of 6. My only concern is whether it’s possible to get false negatives. Also, something may not show up in a child but could show up at any time later in life. I hope to soon see the day when testing will be simple and accurate and CD or NCGS will be the FIRST thing they look for not the last!

      Reply
      1. 14.1.1

        IrishHeart

        amen to that.

        Reply
    2. 14.2

      IM

      …because a lot more could be going on, that you (in this day and age) are likely unaware of.

      Take fructose malabsorption as an example. Aspects of a low FODMAP diet are necessary to adequately treat this condition, which often causes IBS-like symptoms similar to those seen in celiac disease. Fructans are present in a variety of vegetable- and plant-based foods including onions, artichokes, asparagus, inulins and (interestingly) the gluten containing grains (wheat, rye and barley) are also higher in fructans than other gluten free alternatives such as rice and corn.

      Screening for celiac disease will only solve one of many problems.

      Reply
    3. 14.3

      Megan

      Conventionial medicine is way, way behind. Most of the time people are better off seeing a naturopath IMO.

      Reply
      1. 14.3.1

        IrishHeart

        For what?,
        Celiac is not diagnosed nor treated by homeopathy.
        Naturopaths, acupuncturists, chiropractors… can’t write a lab slip.

        Glad it works for you, but it’s useless for others.

        IMO

        Reply
  15. 15

    Gloria @ glutenfreepoodlehome

    This is all very sad, but helpful. I have met a ton of celiacs since my diagnosis 18 years ago. I will not go into my story but most of us have issues with low self esteem, guilt, anger and pain. Mostly we get over it in time. Many times we have broken relationships with our families and lack of trust in medical people. That is why we must stick together. Noone understands like someone else who has been through it. Everything I have done in my life has taken me longer, been harder. It has made me a strong person who pushes through. I graduated from college at the age of 48 and became a dietitian at 49. I know that many people have been diagnosed with celiac because of me and that is my rock. Everyone needs to find something, small or large that they can do to remain positive and leave the bad feelings behind. Being sick took years away from our lives and we have a right to feel angry. But we can’t let it continue to consume us either. These letters show us that no matter how hard we had it, someone else had it harder. God love you all.

    Reply
    1. 15.1

      IrishHeart

      So true, Gloria.
      “Being sick took years away from our lives and we have a right to feel angry. But we can’t let it continue to consume us either.”

      My life would have been drastically differently I had been diagnosed at a younger age and there was so much pain and anguish (not just for me, but also for my husband and my family who watched me wasting away and no doctor could figure it out ) I may have had children. I may have saved my Dad’s life had I known what I know now. So many “what ifs”, so much agonizing pain…lost years , ugh!….Can’t go backwards, though. Only forward.

      I chose to use that anger I felt as fuel.which transformed into acceptance and a passion. I educated myself and researched this thing to death to become an advocate so that no other person I come to know/meet/talk with goes undiagnosed or feels alone because of CD……. not if I can help it.

      Reply
      1. 15.1.1

        Gloria @ glutenfreepoodlehome

        But Irish Heart even though you move on we sometimes have flashbacks or triggers and it all comes back with surprising urgency. For some reason I felt sad about 2014. After thinking about it I was suddenly aware of my feelings about the number. I was born on the 14th, my mother died at 41. I was diagnosed celiac at 41, my daughter was diagnosed at 14. I have weird moments of sadness and then they are gone and I am grateful for what I have.

        Reply
        1. 15.1.1.1

          IrishHeart

          Gloria, I understand this completely. I still have thoughts about the years I was so very ill and about how I lost my Dad during that misery and how sick he was too, about the multiple miscarriages, etc..:(

          There are always thoughts that can come flooding back for us all, but I just let them wash over me ,feel them completely and then I see where I am right now, today!.& how much I have healed and how blessed I am.

          ….and I walk outside and look up and put my face to the sun and I feel better. One day at a time. It’s all any of us can do anyway. :)

          Reply
  16. 16

    Kim

    Wow..just wow. I was like so many of you..felt lousy a lot of the time as a child, stomach hurting, overall yuck feeling, ‘sick’ constantly. I’m pretty sure the school nurse and my teachers thought I was a hypochondriac. I would feel ill after lunch pretty much every day and need to go to the nurse to lay down for an hour. At home, I would often refuse foods. I seemed to just know I was going to feel sick when I would eat certain things. This just made my parents agitated and more than once I had to sit at the table until bedtime or until I cleaned my plate..which I rarely did. More than once my Dad tried to force feed me even..that is an unpleasant memory. And as pointed out, my Mother (whom I’m quite positive now suffered from many health issues due to gluten), was moody and angry much of the time. Which meant I hated telling her yet again that I felt ill and didn’t want to go to school. She did her best to help me though through so much of my sickly childhood and for that I am grateful and lucky.

    Reply
  17. 17

    Claudia

    I did not develop Celiac as a child and so glad I didn’t, because my parents and especially my grandmother thought I was a hypochondriac when I would complain of terrible headaches. I am so angry that some you here got spanked or slapped because you got sick eating gluten. Spanking does not cure anything except silence children. My heart goes out to you all. We are not wimps or picky. Rock on everyone!

    Reply
  18. 18

    Connie

    While I wasn’t spanked (that was reserved for my little brother with ADD), I remember a lot of verbal abuse and anger, frustration, and stress in the house from what I now know are gluten related issues – stomach cramps, diarrhea, vomiting, and heart palpitations.

    My mother never got over the fact that I was a type I diabetic at 10, and the doctors made things worse because at that time, diabetes was all the parents fault through their genetics.

    So over the years I was forced to hold it through diarrhea and end up going all over the car when we were on long car rides, forced to endure all sorts of medical treatments for constipation, reflux, stomach ulcers, antibiotics, and some horrible things like cod fish oil and mineral oil being thrust into my mouth whether I wanted them to be or not. And they made me take them at school too, so I would end up spending my lunches crying in pain in middle school until I got up the courage to say “no more”. I’ve also drank more than the normal share of Kaopectate and Pepto Bismo and being accused of lying about it because it didn’t work.

    The physical symptoms are terrible, but the accusations of lying, faking, pretending to get attention, and purposely being difficult are what really scar a kid. No kid should ever have to go through any of that.

    If we ever adopt (can’t have kids due to undiagnosed celiac-related side effects…yea! not…) I would never, ever, ever treat my children with the kind of frustration and anger that was shot at me when I was younger.

    At this point, I’m in my 30s and have come to the conclusion that my parents are okay people, just not great parents and not real in control of their emotions. I let go of all that anger at them when I turned 30 – it just didn’t seem to make sense any more to hold onto it.

    Now my anger is for the doctors and figuring out how to manage all the things that happened to me because of undiagnosed celiac – debilitating leg pains, frequent SIBO, antibiotic issues, and all sorts of food issues. And I make it a point to throw out more love to the universe than anger, because I think our community needs it. There’s so much healing to be done, and people like Jennifer Esposito, Irish Heart, Gluten Dude, Taylor, Shirley, Ricki, and the other gluten free bloggers are really leading the way to make that healing happen.

    Reply
    1. 18.1

      IrishHeart

      Oh Connie….
      I am filled up with tears right now for the little girl you once were and
      for the lovely woman you are now. I share your sadness at the inability to have children because of celiac- induced infertility. No woman should feel this pain.

      You are just so sweet and I know you have suffered.
      You know we always have your back on here, right? :)

      I don’t mean to get all mother- hennish on you, but I do hope you are taking a good quality probiotic to counteract that SIBO and antibiotic regime? It will help your gut, overall health, and there are proven studies about how it helps diabetics, hon! .

      Anyone, especially a child, who is Type 1 diabetic should be promptly
      tested for celiac disease. They know this now. I just hope they follow through. (“they” is the AMA)

      We’ve come a long way, but we all know the next generation will benefit from struggles of the long undiagnosed celiacs who came before them.

      Things are changing, research is ongoing… and we will see a different diagnostic protocol and better awareness.

      I cannot express how much I admire you for your courage. :)
      giant hugs. Ginny (Irish)

      Reply
  19. 19

    Laura

    Yes! Won’t eat breakfast? Spank, grounded and you get the cold hard leftovers for lunch. Won’t eat lunch? Spank, grounded and you get the cold hard leftovers for dinner. Won’t eat dinner? Spanked, threatened, belittled, mocked and you will sit there until bedtime if it is not finished.

    The next day … rise and shine and do it all again. I was labeled a “picky eater”, “stubborn” “willful” “sickly” and a thorn in my mother’s side. My mother swore I was sent to waste her resources and test her to no end.

    When my own daughter was four years old, the chief of pediatrics at an esteemed teaching pediatric hospital in Boston wanted to admit her to the inpatient ward for anorexics. She was ten years old before we were finally diagnosed overseas while I was working for the government in the middle east.

    Ignorance can cause so much misery. I have even been bullied and shunned by friends and coworkers on those rare occasions when I participate in social events that center around sharing food. I stress out for weeks before holiday parties, work lunches and happy hours knowing someone will inevitably notice I have either brought my own snacks or am not eating.

    I will never understand why the needs of some can trigger such fear, aggression and/or disdain in others.

    Reply
  20. 20

    Kevin

    My parents often accused me of “faking it” to get out of going to school or leave school early. Teachers were the same when I would be a week behind on work and have no excuse for why I just wouldnt turn in finished assignments (I forgot they existed!). Screaming matches with my parents over school, my performance in school, and how often I missed classes or had to come home were common in our household from the time I was in elementary school up until I was diagnosed during my junior year of HS.

    When I was finally diagnosed and I swore up one side and down the other that I had NEVER faked anything to get out of school…you would not believe the heartbreak on my parent’s faces. To this day, almost 10yrs later, whenever that period of time comes up tears come to my mom’s eyes. She was just trying to be a good parent and get her child to go to school and get the grades she knew I was capable of.

    Sometimes a lack of understanding and doctors inability to diagnose lead to parents handling things the wrong way. I think the story from Anna’s comment is an example of pure abuse though… Yes chronic illnesses are hard on everyone in a family…but that is no excuse to physically discipline a child who is ill.

    Reply
  21. 21

    jeanne

    This is such an important topic and exactly why spreading awareness, especially to parents, is so important. I have never been one to spank, but I can recall a time when my son’s issues had me beyond frustrated. He had never had obvious stomach problems – but at 5 years old, he started kindergarten and I had a baby – out of nowhere he started acting out, he would complain about going to school, some days refusing to get on the bus. He would go to the nurse after lunch – often and asking to go home. He occasionally had bathroom accidents. He could no longer sit still at dinner and became picky. He was angry at times – often directed at his little sister who got to stay home and be mommy’s helper. The doctor and I thought he was having problems adjusting to all the change in his young life, was acting out for attention. While I would try to over compensate with extra attention – I would get frustrated and angry sometimes, I wanted him to toughen up. Never did it dawn on me that he had a medical problem, I was worrying he had emotional/psychological problems.

    A year or so later, his baby brother got very sick – and when we eventually learned it was celiac disease (which by the way the doctors completely missed for 2 months, I discovered it before they did) within days of making our house gluten free – my son started feeling and acting differently. He said “I think I always had a stomachache and didn’t know it wasn’t normal”. Yes, it turned out that celiac was the reason for all his problems too, it wasn’t “acting out” or “problems adjusting” to new life circumstances and man oh man did I feel guilt.

    Parents everywhere need to hear your story and understand signs and symptoms.

    One more thing… did either of your parents test for celiac? The spanking could be related, never forget that celiac and mental health/anger/depression can be closely related!!!!

    Reply
    1. 21.1

      Sarah

      I can relate. My son started getting stomach aches right around the time he started first grade. I thought he was having troubles adjusting and was trying to get out of going to school. What really got me concerned was when he had to stop his favorite activities, like baseball, because of stomach issues. Fortunately he was diagnosed fairly quickly and is feeling much better.

      Reply
  22. 22

    anna

    Thanks to GD for posting about the difficult topics surrounding celiac disease – even the especially unsavory ones. It’s an important discussion and I hope others found this discussion as helpful as I did.

    Reply
  23. 23

    not mom-of-the-year

    I am so sorry. This breaks my heart and both my good friend and I have cried over it… we were moms like that. Not to that extreme, but both of us (prior to finding out our children needed gluten-free lifestyle) have disciplined our kids for being fussy and disobedient. My husband was also punished as a child for the same reasons (he has a different food allergy…which to this day none of his family respects)

    We have apologized to our children and it is so devastating to go through this. My only hope is that someone with some media power would publish that if a child is ‘fussy’ and has ‘stomach-aches’ and routinely won’t eat what is given for dinner—maybe the child is doing the only thing he or she can to survive. And unfortunately many of us were brought up in cultures where disobedience is a grave wrong and not cleaning your plate is just as bad.

    Instead “specialists” with LOTS of education and access to $$$$$ studies and medical labs facilities that we could only dream of , tell us that “nothing is wrong”, “the child is a fussy eater”, “children will test your limits as far as you let them”, “stomach aches are a result of stress or a good excuse not to do something”.

    Lord have Mercy.

    Reply
    1. 23.1

      IrishHeart

      Hi mom,

      You may be interested in reading Jess’ article here:

      http://www.thepatientceliac.com/2013/11/22/non-celiac-gluten-sensitivity-in-children/

      She is a doctor (and a celiac) and writes very eloquently about this subject. There are medical journal articles out there, but the doctors have to be willing to read a current medical journal once and a while.

      And I am sure your children understand–do no beat yourselves up over it any longer.:)

      Seriously, how could any one of us have ever known that a single food protein –considered “healthy”by many— is capable of such destruction in some people’s bodies? Or that it makes the body attack itself and causes malabsorption, and serious brain and body malfunction?

      It’s almost like a script for a bad sci-fi movie, only it’s very real.

      Reply
    2. 23.2

      Sue in Alberta

      How were you to know? Kudos to you for apologizing, now work at not beating yourself up. It’s a huge learning curve for everyone involved.
      Thanks for the link to the article, IH.

      Reply
  24. 24

    Hil

    I had the same experience in the early 90s although no spanking was involved. My parents thought I had was trying to get attention or feeling guilty about something since I was very rambunctious as a child. Fortunately they just complied with me eating the hamburger and not the bun and and being “picky”. They thought I was a healthy eater since I liked vegetables more than bread and would complain about greasy pizza making me feel sick. I didn’t have regular “classic” symptoms but I’d have terrible pain and insomnia every night with occasional migraines. When I did sleep I had scary dreams so vivid it would be like hallucinations so I hated sleeping. I used to try to wake them up to get them to help me but eventually I just played in my room all night trying to distract myself from feeling sick. I started to think I had guilt issues too.

    This went on from age four to about twelve when my symptoms shifted to mostly migraines, rashes, fatigue and malnutrition. No more pain for a while. It wasn’t until I was out of college that I got the traditional celiac symptoms (aka: bathroom issues) and after ruling out a number of other things I forced my immunologist to give me the test. I had rashes, red eyes, inflamed sinuses, weight loss, and hair falling out and he still didn’t believe me! Until the results came back.

    Ironically my dad turns out to have celiac too after I convinced them to get tested when some of his “gallbladder” and constant sinus infection issues made me suspicious. They feel bad about not listening to me all those years. The majority came pre-internet and they trusted ignorant doctors and bad parenting tips. In my history my parents were just two of a slew of adults that never listened to me. I hold the doctors responsible. My parents did take me in to see them. Every doctor failed to figure it out and one of them even thought I was a hypochondriac to the point I stopped reporting my problems as a preteen.

    Reply
  25. 25

    Nutrimom

    …as a food allergy mom, I am horrified at the mere thought of this. I understand how some parents may not understand fully, how some have a hard time differentiating between a child who is playing sick to stay home as opposed to one who really is but never, never could I even imagien this as an option. Ever! I have an overwhelming urge to hug every single adult and child this ever happened to!

    Reply
    1. 25.1

      Jeff

      Oh good for you. I can give you directions to my place at the public housing I am still in as no mere result of ongoing seemingly permanent federally prohibited job discrimination, and tips and advice on how to stay away from the true malingerers over here on the way. And, I have a stuffed tiger I named “Mervyn”(after a friend from South Africa who iis battling a rare form of long cancer and chemo for that). He is able to hug any adult as well, so if you wish to bring more that could use hugs also, feel free.

      Reply
  26. 26

    A. Rogers

    That is so terrible. I can’t imagine. I have a 4 year old w/Celiac. We found out when he was 2, so he has been 2 years 100% off all gluten/wheat other then a handful of times where he was accidentally poisoned from contamination.
    I am wondering though when you posted about not being able to sleep as a child due to leg pain.. if you ever did find something to help with that. My little guy still has leg pain, sometimes daily, sometimes it skips days, and I just started taking him to a Chiropractor, but I am not sure he really gets, understands or even can help.
    Nutitritionally I have used homeopathy, and was using probiotics, but his system is so sensitive I have to be careful that I am giving him good high quality supps if I add them. thanks for any advice!

    Reply
    1. 26.1

      IrishHeart

      Sometimes leg pains really are “growing pains” –the medical community actually uses that term .I find it rather vague, but that’s what they call it. They do not know what causes it.

      But if he is having real, consistent pain in the bones and joints OR in the belly of the muscles, he may have some vitamin deficiency (like Vit D, B-12, folate or calcium and magnesium, for example). It sure caused me some serious pain until it was resolved.

      Can the pediatrician or the GI doc run some blood work? It should be part of his follow-up care.

      A good quality probiotic is a good idea. Can you do a small dose for children (such as the one made by Custom Probiotics?)
      NOTE: I have no affiliation with that company; I just find their products effective.

      Homeopathy will not resolve vitamin deficiencies if that is the underlying issue.
      I hope your wee one continues to improve and flourish!

      Reply
  27. 27

    A. Rogers

    Thank you! I think I will take him in to our natural doc and have his blood work ran. I do Vit D3 drops, and Mercolas childrens vitamin, and pure omegas too, and JUST got a quality B complex but def would help to know what his deficiencies are.

    Reply
  28. 28

    MozartandBanjo

    I too can relate to abuse and neglect as a child due to celiac disease. Threats, verbal abuse and shaming were a daily part of meal time, while corporal punishment was used when I “made myself” sick after eating. My family refused to take me to doctors because, in their ignorance, they believed nothing was wrong with me. My mother was truly shocked when I was diagnosed with celiac as an adult. This thankfully led to proper treatment for my own daughter. As a teacher, I’ve had the opportunity to speak to school nurses and parents about the symptoms of celiac disease, and encourage parents to share their concerns with their pediatricians. For this opportunity I am grateful. We must do what we can to insure that this generation of children with celiac disease does not suffer in silence.

    Reply
    1. 28.1

      Jeff

      Very much appreciate your comment, particularly as it pertains to the education system. Truly a “cycle of abuse” can result from a “cycle of ignorance”. Your post reminds me of the bumper sticker: “If you think education is expensive–try ignorance.” God bless you!!

      Reply
  29. 29

    Jeff

    Now maybe I shall be the world’s violin here. I was dragged to the Principal’s office at Parochial School(a Nun who, eventually, decided my parents should see a Psychiatrist and wouldn’t take no for an answer, and the Psychiatrist incarcerated me in a mental ward for five weeks at age 11). I got spanked maybe twice, so it wasn’t spanking…but it wasn’t a nice time either. Two years of being banished from that school having to consume psychotropic medication of thorazine. No–it was abuse. No one ever apologized to me. The Catholic church is still as holier-than-thou, wealthier-than-thou, condescending pity-driven as ever. They only pity you for your educational underachievement. Never anything based on any trait of HUMANITY. Ever. May they rot in Pedophiliac Piss.

    So, the bottom line is:abuse is abuse. Usually worsened in both tone and long term effect by the ignorance we all know and hate so forcefully. Yeah.

    Reply
  30. 30

    footsie

    Wow Gluten Dude
    You sure know how to open that ol’can of worms. My whole life I thought it was just me that got the same food until I ate it, etc etc etc see above. Although my parents were loving and kind, they believed in the old story of eating because somewhere a child is starving and so if you don’t eat you make it worse for them myth. The did not tolerate “fussiness” in any way and as a result my childhood was one long food fight. Some battles I won, but I lost the war. I guess I was just too small. Now, with the knowledge of a diagnosis I know that all those things I would not eat – I was not meant to be eating. Oh if only big people would stop and listen to small peopl.

    Reply
  31. 31

    Barb

    In a way I was the person parent and the child. I had no idea of celiac. I grew up with abuse but that had nothing to do with celiac. Though I am sure my mom had it and it killed her.

    I had my son and he cried from the get go. Nothing would calm him but to put him in a room and let him scream himself to sleep. I was beyond frustrated. I never hit him but I did yell a hell of a lot. I started to get sick myself and no one knew of celiac. I am sad for how it turned out because my son is a good person but now has his issues due to growing up that way. He was sick too and I did not know it. All I can do now is shake my head. I help my son when he does something good now and when he makes a mistake I let him figure it out the hard way.

    It took me over 30 years to figure out why I got sick.I Had the symptoms as a child as well. The horrid rashes. I never told anyone of the horrid stomach pain by then I learned to keep my mouth shut due to my own abuse by my father. I never had a normal life and I still don’t. Even gluten free I am sick much of the time. I am now eating only 3 foods meat and two veggies. My weight is going down so that is good. That was why I was obese as well.

    Now my grandchild likely has it and the mom will not check to see if it so. I have no say in the matter as well. I just see the child from the to time and I see she is behind her age group. They are calling her autistic. She is not autistic because she can do my computer games. She likely has the bad brain fog. My son also tells the mom but she goes on ignoring. My son now has the out and out symptoms too and he finally gets what I have been going through.

    So if we know way back when my and my son’s would have been much better. I still would have had the abuse in my history but I would have went gluten free and my yelling would not be. I was like a monster at times not being able to stop yelling. Now I very seldom do. I go out of my way to avoid yelling and conflicts.

    I am sad. Though growing up as I do I fully understand why the money system has to go away. When it does and it will you will see a better world for celiacs for the most part. No profit it lying then.

    If it was not for the web I would have followed my mom’s path and died a horrible sick death. I had the web and I read and read and web friends sugggested celiac and I said no even if I did not know what the hell it was. I was really bad one day so i went to look and yes it was. I was fully on the list. I was on the road down the medical pills which almost gave me kidney failure due to HBP. I was taken off of them and it took me years to learn how to be celiac. Actually even if the gluten free society has been mocked on this blog it was the group that got me on the right path for no cost. Their vitamins is the only one’s I can take as well. I almost did not follow this blog because of that mocking of group that helps people. You don’t to buy their stuff to improve. I know at that time I did not do so and they are right. All grains have a type of gluten in them which most react to so they don’t get better.

    I have a bit of tears in my eyes doing this. No one considers what we can eat. Local celiacs that I met cheat so I walk this road alone and now with my son as he has it too. I shake my head at the crappy medical people that ignore years of saying one is sick.

    At least my weight is going down now now. Only time it did in my life was when I starved myself or did strict Atkins and now I know why. I know look at Obese people sick from gluten issues. I consider no human can properly digest gluten via new research.

    A sad story for us for sure.

    Reply
  32. 32

    Kevin

    I wasn’t spanked any more than a healthy child, but I got psychologically punished for my celiac-related shortcomings. I spent my whole childhood sick with celiac disease and adults who were ignorant and didn’t help me. Now in hindsight all of my problems can be matched to malnutrition. Among my many deficiencies that I now realize I was suffering from was vitamin C. This meant messed-up gums, torrential nosebleeds, tendonitis starting at age 9 or 10, and worst of all, my eyesight was ruined. What was later revealed to be a -7 or -8 myopia went totally unnoticed for at least a year in elementary school.

    I was punished relentlessly for the eyesight. My grades suddenly took a dive between 2nd and 3rd grade. My mom called my dad and told him my report card had come back bad, so dad rented the Star Wars movies on the way home from work that night just to withhold them from me as punishment. Then the teachers didn’t help either. I was sent to the back of the classroom or out into the hallway when I cried out of frustration of not being able to understand what was on the chalkboard. I became hysterical, feeling so helpless because I used to be such a good student, but now was unable to understand the material that the other kids were getting just fine. It was horrible.

    I was finally given glasses when the health department screened all the kids in the school for vision problems.

    Nobody apologized except one of my teachers, and it wasn’t until I was in my 30s.

    Reply

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