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69 Comments

  1. 1

    Tammy

    April 2012 – my mom died from enteropathy associated t-cell lymphoma – cancer directly related to untreated celiac disease. In my mom’s case – she didn’t know she had celiac. It took only 18 days from her entrance to the hospital until she passed. With this reality out there – WHY ON EARTH would someone “cheat” on the diet? Yeah, it often really, really sucks to have celiac. But the one thing I cling to during those dark times is that at least I have some control over my disease. At least I have a disease that doesn’t require me to pump my body full of man made chemicals to treat…pretty much the exact opposite is true ;)
    And the movie is Caddyshack…one of my fav movie quotes :)

    Reply
    1. 1.1

      Gluten Dude

      Real sorry about your Mom Tammy.

      And you’re right…we ARE lucky. We get to treat our disease naturally.

      And kudos to Caddyshack :)

      Reply
  2. 2

    Adrianne Gentleman

    couldn’t agree more, My Farther died in 1999, of non hodgkins lymphoma, after having an improperly diagnosed skin condition for most of his life.

    Reply
  3. 3

    Yvette

    So sorry to hear that Tammy and Adrianne. It’s infuriating that ppl with this disease cheat. I was diagnosed in April. I have never cheated although I have made many mistakes and glutened myself of course. I have been glutened many times when out to eat. It took some time to gain the confidence and knowledge to tell staff what I need for them to do for me. I still get glutened. This is such a serious disease as u all know. I can’t believe someone would gluten themselves on purpose. I can barely work with all the problems this causes me when glutened. Besides the numerous other prob that have crept into my life. Celiac dude u r awesome. I follow a lot of blogs and fb pages and I’m sick of all the gluten free recipes and processed food suggestions. I can figure out how to cook gluten free in my home. It’s everything else that goes along with this disease that we all need help with. This is my first post. More like a rant; sorry I was glutened a few days ago. I really do feel for those of is who live with celiac and intolerance. Again sorry for the losses Tammy and Adrianne have experienced. Stay healthy guys.

    Reply
    1. 3.1

      Gluten Dude

      No need to ever apologize for ranting here Yvette. That’s what we’re here for.

      Reply
  4. 4

    Lisa Mims

    Thanks again, for a very important post.

    I haven’t intentionally cheated in 14 years. What has happened to me, repeatedly, is that I’ve been glutened by people that I’ve been dating, who couldn’t bother to read labels or eat out where I could eat out.

    My current boyfriend is an incredibly kind soul who lets me do all the cooking and when I said, “Actually, I think I’m gluten, lactose, and fructose intolerant”, just looked at me and said, “O.k.”

    He also eats gluten-free pasta, bread and crackers with me, without comment, although he doesn’t have to.

    I’ll tell him again why he is wonderful.

    Reply
    1. 4.1

      Laura

      My Dr. told a story about a gluten-sensitive patient who was being glutened every time she kissed her boyfriend! He was eating sandwiches for lunch!

      Reply
  5. 5

    Toni

    My dad died from lymphoma 9 years ago, and intestinal issues run rampant in our very large family. Also, everyone of his 11 siblings is/was diabetic. My cousin and I, and her daughter and My daughter are the known celiac disease cases in the family. My cousins dad died when he was 32 from an intestinal cancer. The rest of the family chooses to ignore the whole thing. When you have a family as large as ours, we are like our own study population! You can see the trends without having to look very far. On the diabetes issue, the doctors told my aunt she had type 11/2. Adult onset type 1, in other words autoimmune caused diabetes. I know of other cases of type 1 is cousins children, and yet no one wants to hear about celiac disease……
    I have yet to find a doctor who knows their butt from a pineapple about celiac. My current doctor hasn’t ordered labs in 2 years, and told me to find out what he should be testing for……yep, feeling real safe here. ; )
    Have a great day, take care of yourselves! I’m off to enter some cookies in a gluten free baking contest at our county fair. Fingers crossed!

    Reply
    1. 5.1

      Gluten Dude

      “I have yet to find a doctor who knows their butt from a pineapple about celiac.”

      Thanks for the chuckle.

      Reply
  6. 6

    Jersey Girl

    GD-

    This does not surprise me at all. My grandfather passed a few years ago from stomach cancer after having stomach problems all his life (perhaps untreated celiac?). As a scientist I have often wondered if once your immune system gets trashed by celiac it allows other diseases like cancer that you are genetically disposed to appear. Bet it won’t be long until that link is found.

    Condolences to Tammy and Adrianne.

    Xo-
    Jersey Girl

    —————————-

    “At last, a comedy that bites!”
    Caddyshack

    Reply
    1. 6.1

      Gluten Dude

      I bet it won’t either JG. Sorry about your g-father.

      Reply
  7. 7

    Adalaide

    My MIL has lymphoma. Remission right now again, but who knows for how long this time. She is an obvious walking, talking celiac case. And… she has said to me straight up that if she had to do what I do she would just eat whatever she wants and let it kill her. Maybe she could stay in remission with a diagnosis and compliance. Maybe she would see her grandkids graduate high school or get married. But no, take out and bread are more important to her than being alive and not dying of cancer.

    Let me just point out that it is difficult to watch someone you care about suffer this way. You don’t just die when you die of cancer. Your entire family suffers, and sometimes that suffering lasts for years before go. Every time you cheat you aren’t just risking your health, you’re risking the security and sanity of your family while they watch you slowly die a horrid and painful death. If you’re cheating on purpose, and you know the risks, that kinda makes you an asshole.

    Reply
    1. 7.1

      Gluten Dude

      Poignant comment Adalaide. Sorry to hear of the struggles.

      Reply
      1. 7.1.1

        TerriO

        WOW–this could be my family! When I go to my parents’ house they cant even get through dinner without running to the bathroom. they say, “I dont know where you got Celiac! Certainly not from US!”
        Yeah…ok, they are ostriches.

        Reply
        1. 7.1.1.1

          Adalaide

          It is so sad when they won’t listen! I know from conversations with my MIL that she wouldn’t and have talked with my husband about it extensively and he agrees with me. So, we have decided not to burden her with the knowledge of what she is doing to herself. What boggles my mind is that a doctor would diagnose anyone with any type of lymphoma and not test for celiac! Shouldn’t that be standard?

          My mom’s family also surely carries the gene, as does my dad’s. I got a double whammy from them. My mom’s mom fought valiantly against colon cancer for 7 years after her diagnosis. She was one hell of a spitfire for all her small size hah! And it wasn’t until the very end that she became truly, obviously sick and let it get her down. The rest of the family suffers from so many health issues I can’t begin to count them. My dad’s family… I can’t count on one hand the number in my immediate family who has a gallbladder left. Gluten intolerant aunt, and just other random although not what most of them consider particularly seriously AIs. And not a one will get tested for celiac. I don’t even think my brother has taken my diabetic niece in for testing. Diabetes by itself is grounds for testing without a family history. ARGHHHH!!!!!!

          Reply
  8. 8

    Irisha

    My story is pretty similar to Tammy’s (your first comment). My mom died at 58 from colon cancer. By 30 I was having the same symptoms she had most of her life and eventually I was diagnosed with celiac 4 years ago. I AM 100% SURE my mom was a celiac and unfortunately none of the many doctors she saw for years asked for any celiac tests. Socially (restaurants, etc) this disease sucks. But personally, I think it has changed my life for good. As Tammy said, no medications involved is a bless. In order to recover my intestine I followed the SCD diet for a few years and now I am beginning to eat some starches again. I am healthy and lean and I am not feeling sick all the time. I can’t understand why other celiacs cheat sometimes. But maybe for me is easy because I saw my mom died and, believe me, that makes you realize that food is just food, staying alive and healthy is much more important.

    Reply
  9. 9

    Dennis

    Great info. Ironically I just got back from follow up visit and Dr said I’m healing well. Your info and stories from others are much appreciated. It is so hard to get people to understand that I can’t have any gluten. They always say “oh a little bit can’t hurt you. Take a Tums.” They just don’t get it. Thanks for continuing to educate those that may not understand what it means to truly be gluten free.

    Reply
    1. 9.1

      Gluten Dude

      Doing my best. Thanks Dennis.

      Reply
  10. 10

    Janet

    My mother died of cancer in 1998. She didn’t know about celiac disease. She was 65 when she died, as was her mother before her, who died of the same horrendous disease.

    Mom had all of the symptoms – skinny legs, bloated tummy, drank lots of water to help with stomach pain. She was anemic. She got vitamin B12 shots. She had migraines and on occasion, seizures. She always had dark circles under her eyes. She battled fatigue. She had rashes (claimed she had sensitive skin) and lots of bowel trouble. She went to the doctor on a regular basis, but nobody figured it out.

    After she died, in 1998, my sister began to be constantly bloated. She felt terrible, low energy, constant headaches, canker sores, etc. She figured out that she has celiac disease by reading a magazine article!

    Since then, I also figured it out. When I eliminated wheat from my diet (and corn and soy) all of a sudden I had energy! My headaches cleared up (I have a different sort of headache now from whiplash) and my canker sores disappeared. My many and varied symptoms from skin issues to bowel issues disappeared. After we’d changed our diet and eaten gluten free for a few years, some doctor wanted me to put myself and all of my children back onto wheat, so we could have a confirmed medical diagnosis. NO THANKS. I knew what it would do to my children and myself, and I wasn’t having any part of it.

    I never cheat, not on purpose. We rarely eat outside our home. Just last week my husband and I stopped at a restaurant on a day trip, and I was sick for two or three days from some spice in the “safe” Greek salad. Sigh.

    My brother and one of my sons still eat wheat. I fear for their future, but there’s nothing I can do about it.

    Thanks for this article. Hopefully it will make “cheaters” think about their future. Cancer is no joke.

    Reply
  11. 11

    Lindsey

    what is the difference between gluten removed beer, and a spirit like Whiskey that’s made from gluten grains?

    Reply
    1. 11.1

      Gluten Dude

      For spirits like vodka, whiskey, rum, etc., the distillation process removes ALL of the gluten. For the gluten-removed beers, they use their own proprietary process to remove MOST of the gluten.

      Reply
      1. 11.1.1

        Sarah

        While distillation should separate out the gluten – I would again caution that this process is happening in a wheat factory where they aren’t necessarily being careful about CC. Also, some processes add mash back, and let’s not forget color and flavor!

        If you think it made you sick…. trust that!

        Reply
        1. 11.1.1.1

          Gluten Dude

          I’ve never heard about CC during the distillation process. They’ve been tested and show no gluten at all. Now flavors,etc…could be a risk factor there for sure.

          Reply
          1. 11.1.1.1.1

            Sarah

            I’m just proposing that if you have wheat around and aren’t focusing on preventing cross-contamination, I could see the potential for there being traces in the container the distillate is collected in. Not all batches are tested

            Reply
            1. Sarah

              I hate to be the person who is trying to think of every possible way gluten could be in these things… But all I know from my experience is Tito’s good… Gin bad.

              Gluten Dude – If there is a chance we could be missing parts of the process that contaminate thing… We’re cheating on our diets… I care about all of you!

              Reply
              1. Lindsey

                I used to love Whiskey, but now i can’t drink it without getting really sick. not sure if it’s celiac related or not, but now i only drink alcohol made from gluten free grains just incase. i used to wake up with wicked hangovers after just drinking a single drink. it’s a shame because i come from a huge irish family where Jameson is the drink of choice at any gathering.

                Reply
  12. 12

    Sprueli

    first of all my Condolences for all who lost Family and Friends…

    thanking GD for this important post. i think that sometimes we do get weak and thinking about cheating once a year or so.
    i am a leader of a selfhelp group so i will be a good example not to cheat.
    since my diagnosis i am taken care of 2 Professors who have found the link between CD and other autoimmune diseases like i have – HASHIMOTO and the late Type 1 Diabetes, we here in Europe call this one LADA – http://www.diabetes.co.uk/diabetes_lada.html

    my diagnosis was almost too late – i was in a very bad shape, was called a hypchondric by my home doctor, and that is the sad part about it – many doctors do not take the patient serious to look for more / making more tests to find out the bad shape. i give the fault to the messed up health system, where there are only a few minutes for the patient to treat…

    Dentist should also be informed when the teeth are in bad shape like mine where a long time – he told me not to brush my teeth too hard because i am loosing the good protection if you know what i mean…
    i also had lack of Vit. D + B12 too long, my bone condition is getting worse each year…
    and thats still not all the health problems i have…

    one thing would interest me if there is also a relation to gall stones. mine made huge problems including a very bad Pancreatitis last year where i was in a very critical condition…

    Reply
  13. 13

    Anna

    I too lost my mom to non-hodgkins lymphoma, and she had all the indicators of celiac, but we didn’t know to consider it until I was diagnosed. Now I see it throughout my family, but even those who eat “carefully” don’t want to get tested because they don’t want to “live that way.”

    yes, well, I don’t want them to die that way. Encouraging others who may be suffering unknown to ask their doctors and their children’s doctors to test them could save them so much pain and perhaps their lives.

    Reply
  14. 14

    Alyson

    My condolences to those who have lost loved ones and posted about it here. My mother passed of a heart attack two and a half years ago. My health started to decline and I was eventually diagnosed with Celiac a year and a half ago. I remember when my doctor said he was going to test me for the disease it was like a lightbulb going off! I finally knew what had been wrong with my mother all those years! I feel fortunate to have been diagnosed so quickly. Unfortunately, I am dealing with other autoimmune issues and being tested for Sjogren’s Syndrome which comes with its own 44% increased risk for Lymohoma. I would never ever intentionally ingest gluten!

    Reply
  15. 15

    Claudia

    I have never cheated. I don’t want to cheat. I just went to my 40th high school reunion and could eat anything except the fruit and vegetable plate. I know some people thought I am an anorexic. Trying to explain why is even a bigger problem. My father died from adenocarcinoma of the lung which had spread to the small intestine. If I were to venture a guess, I would say that Celiac came from my father’s side of the family given the fact that one family member had Lupus. I never, never cheat. I want to live so I don’t need a donut.22

    Reply
  16. 16

    Christy

    I am one of those people that cheated off and on for the first 3 years after diagnosis. The thought of it now makes me cringe. But I was in a deep dark place emotionally without the support that I have now. I honestly didn’t care enough about myself to stop. Now things are completely different. We are 100% gluten free in the house so that I feel safe here. And I’m as careful as I can be with the foods I purchase. But I do still eat out. It’s a big part of who we are (foodies). I am lucky enough to live in a city where there are a few places that really get it and I feel safe at. But my kids love places like Chipotle and we eat there probably twice a month. What are your thoughts on the possible extent of damage that might be done with any chance of CC? Is that possible tiny crumb twice a month doing enough damage to keep me at an increased risk for Lymphoma? I know the only way to know for sure is to get scoped, but I’d love your thoughts. Also I went to a dr the other day and asked if we could redo my bloodwork to see if everything looked normal and she said “there is absolutely no need for any Celiac retesting if you feel fine” Needless to say I won’t be seeing her again.

    Reply
    1. 16.1

      Gluten Dude

      I appreciate your honesty Christy. As far as the damage done by CC, I suppose it depends on the person and the amount of CC. A scope is the only way to know for sure.

      Reply
  17. 17

    Melissa

    Yes, this is serious s**t. Friends don’t let friends eat gluten. As you know, I watched undiagnosed celiac disease contribute to my dad’s death. It was a sad, heartbreaking ordeal. My gosh, it’s food. Just say no to that one option. It’s not like there’s nothing else out there to eat.
    Good reminder, GD. Thanks for your efforts. We’re all in this together.
    Now, go eat a beet salad!
    Melissa

    Reply
    1. 17.1

      Gluten Dude

      I will one day again eat a beet and I will dedicate it to you ;)

      Reply
    2. 17.2

      Claudia

      Good point Melissa.

      Reply
  18. 18

    IrishHeart

    Serious shyte indeed.
    Like Melissa, I watched my Dad die from kidney disease, uncontrolled anemia, and tanked hematocrits needing dozens of blood transfusions from what most certainly was undiagnosed celiac and I only found out I had it myself 3 years after he died after nearly kicking the bucket myself.

    And the very first thing my astute new GI doc did? Check me for intestinal lymphoma because he knows full well the risk of that being associated with long undiagnosed or untreated celiac.

    The good news is: 5 years on a GF diet, and our risk is no different than anyone else’s.

    All AI diseases are linked to inflammation in the gut. Any number of them like diabetes, cancer, heart disease, etc—will likely rear their ugly heads in anyone whose celiac goes untreated.

    If most celiacs take a good look at what killed their beloved relatives before them, I am betting there’s a good chance they were all unDxed celiacs, too.

    Anyone who cheats is a big fat dope. Don’t be a big fat dope.

    I think I have seen Caddyshack 20 times or so. I probably should not admit that.

    ” Ty Webb: You take drugs, Danny?

    Danny Noonan: Every day.

    Ty Webb: Good. Then what’s your problem?

    Danny Noonan: I don’t know.”

    Reply
  19. 19

    Nikki Everett

    My daughter (celiac) had a grandmother who died of intestinal cancer after being misdiagnosed for years with everythin from IBS to Diverticulitis, etc. This is why I stay on her about eating strictly gluten free and we eat mainly whole foods from home made rather than dinners out. Sure it is great to eat out and get a break, but we never intentionally cheat in any case. She has been diagnosed for 5 years now, and although her health is better, she still gets raccoon eyes when she isn’t up to par or has eaten anything questionable. That’s our greatest litmus test.

    But I am glad there is some testing even though 0 ppm is not detectable to test for.Unfortunately, scientists can only come up with a 20 ppm standard. Australia had a 0 ppm standard and is changing it. Whether that is bought or setting the standard to EU, I do not know. I would think both.

    Although I get raving mad at companies who don’t take it seriously enough, I also remain focused on the fact that personal choice has to kick in as well. I mean, I can rant at someone who cheats just as easily as to rant at the company who takes advantage of it. Or rant at the fad dieter who makes it harder for us to navigate. A rant feels good and self satisfying sometimes. And I can justify that I am speaking for the greater good of it all as the Mama Bear I have shown myself to be many a time…But the choir has to be willing to hear the message or my rant falls on deaf ears. You wouldn’t believe the amount of times I get frustrated at people who believe their doctor is god rather than get proactive about their health – Another rant all in itself, self-accountability…

    Good post:)

    Reply
    1. 19.1

      Gluten Dude

      “Good post.”

      An even better comment.

      Reply
      1. 19.1.1

        Joanna

        You know the actor you died recently from a heroine overdose – I cannot remember his name. Sometimes I identify with what it might have been like for him. “I know this might kill me, but I just can’t stop”. I googled, “celiac and cheating” to get a refresher in how this effects my body. I am scared. I am very aware and still I feel like I cannot stop especially during PMS. I have two beautiful children with many food sensitivities. My whole life is food. I know I need to be a good example… Many of you are likely aware of how gluten and dairy effect the opiate receptors. I feel like I need an addictions specialist. I am sharing this because I hear the judgment and disbelief that someone would do this to themselves. It is horrible and I am ashamed. I think for some of us it may be more complicated. It does not feel like simply making a choice. Some days I feel like every moment I am fighting a craving. If my attention and will are pulled in a different direction (which is often with a toddler and a husband who travels for work), I become weak. I know there are answers and I am committed to figuring it out. I am sharing just in case anyone else has felt like this…. you are not alone. I also express much admiration for those who just decide they are done – and that’s it. I cannot eat dairy, any grains, nuts, seeds, eggs, soy, or night shades. It is not an excuse. I must figure it out. It is difficult. My cheating has nothing to do with a lack of love for my family but some crazy out of control compulsion in my head. I am not asking anyone to understand…. just letting you know what it might be like for some of us. Very much like the alcoholic who drinks and knows if he doesn’t stop, he might lose everything…

        Reply
  20. 20

    Lyn

    NO ONE would intentionally eat gluten if they felt the pain and discomfort I do when I get glutened! Yea pain–you keep me from being stupid.

    Reply
    1. 20.1

      IrishHeart

      amen to that, Lyn.

      Reply
    2. 20.2

      Sue in Alberta

      Couldn’t have said it better than that, Lyn.

      Reply
    3. 20.3

      GF and More

      Absolutely. The pain when I get accidentally glutened is something I can never imagine putting myself through intentionally. Nothing is worth that. As GD says, it’s just too risky.

      Reply
  21. 21

    Constance

    I now know that my stepfather must have had Celiac Disease. He had part of his small intestine removed before he met my Mom, and then years later he had to have a similar emergency surgery when his intestine collapsed. He had ALL the symptoms on-going, of Celiac Disease, including the mood swings (which my Mom and I never understood for all those years). He suffered terribly beginning when he was in his 20s. He was a very good man with a wonderful heart, but he was so misunderstood. My Mom loved him dearly, and he loved my Mom so much, and I always loved him for that. He was difficult to grow up with, but at the same time, he was also there for me at times when no else was. If only I knew then what I know now. I could have helped him. It makes me crazy thinking about that. My Mom and I just didn’t know, the doctors diagnosed him with Crohns and epilepsy, and he had a number of other health issues that doctors could never explain. He was Italian and loved his pasta dishes. When I look back and think of all that pasta he was eating, making himself sick without knowing it, eating all that delicious fresh baked Italian bread from local bakers, every day, it just blows my mind. May he rest in peace and know we will always love him.

    Reply
    1. 21.1

      IrishHeart

      Oh Constance,
      I can feel the sadness in your words. Sorry, hon.
      I have said this myself a thousand times.” If I only knew back then what I know now, I could have saved my Dad”. Makes me terribly sad.
      He had dozens of symptoms develop and even had an aortic valve replaced and he never complained. I can see him now scratching himself silly, looking pale and being short of breath from anemia and still, puttering around his garden and smiling anyway.
      He would sit in the transfusion room for nearly 6 hours getting double pints and chatting up the nurses. Everyone loved him.
      And I know he suffered for most of his life from ulcers and h.pylori infection. One of my earliest memories of my Dad is him swigging down Maalox every night.Poor guy. :( In the end, he had to have dialysis and he hated it so much and asked me if it was okay to stop.He knew full well he would not last a week without it. He was just tired and when I developed all those painful symptoms of malabsorption, I could relate. I thought death would be easier too at one point.

      I KNOW he had celiac and it makes me angry that none of those doctors could see it (then again, it makes me angry none of them saw it in me, either…)

      We can’t go back and change what happened of course, but we can continue to educate others about celiac and its many symptoms. It’s the only way I can make sense of what happened to him and to me.

      Reply
  22. 22

    Julie BK

    Thank you once again for the information. I am on vacation with our extended family this week, and my Aunt was trying to tell me I have a “designer disease” and did everything but come right out and say she doesn’t think I have a gluten issue. I tried to explain to her how much better I feel since I have eliminated gluten from my diet, but she still didn’t believe me.
    Although my dad passed away five months ago from ALS (Lou Gehriig’s disease), he had digestive issues his entire life. The worst of it was diverticulitis and he had to have several sections of his intestines removed. Although a GF would not have saved his life, I truly believe he would have had a better quality of life before the ALS kicked in. We (he andI) were always told we had a “nervous stomach,” which to some degree is true because our bodies would get upset whenever we consumed gluten.
    My condolences to all of you that have lost a loved one. I feel your pain.

    Reply
  23. 23

    MJ

    This terrifies me because of all the times I react even though I never cheat. I don’t eat out, I cook almost everything from scratch, and the few processed foods I eat are certified gluten free/made in gluten free facilities. But I still react quite often (if I go a month without getting sick I’m doing great). I usually don’t know what caused it; I’m also dairy and soy intolerant and very sensitive. I’ve been struggling to be healthy for 3 years without ever intentionally cheating, and it’s so discouraging to know that I could still be at risk for cancer despite my best efforts.

    Reply
    1. 23.1

      MJ

      I forgot to add that even though I don’t know for sure what side of the family I inherited it from (I have one of the celiac genes), I did have a first cousin who died at age 18 from lymphoma. :(

      Reply
    2. 23.2

      IrishHeart

      But, you are not at risk despite your efforts.
      From what you are describing, and how careful you are, it is probably not gluten causing your symptoms..

      I see people often using the word “reacting”–what exactly is happening? maybe it is something else causing your symptoms?

      Do not worry that you are going to develop lymphoma just because you are still not feeling well. Lymphoma develops when people are not gluten free–and CONSISTENTLY cheat and barrage their system with gluten
      This does not sound like you. :) .

      If you are worried, ask your GI doctor to test you for gluten antibodies or do an endoscopy with biopsy.

      Reply
    3. 23.3

      Hannah

      Hey I recently saw a list of foods, that because of their protein make-up, cause a gluten-like reaction, but not always quite as severe. It explained so much because, just like you, I’m super carefully and was still getting sick. I don’t remember all the foods on the list but I know that I react to these:
      All vinegars, coffee, chocolate, honey, soy, dairy
      Also on the list: corn
      There were a few more but I found that my big triggers are coffee, chocolate and vinegar. So sad but I feel so much better without!

      Reply
    4. 23.4

      Laura

      It’s been a few years but have you tried the ELISA/ACT food sensitivity test. It is very accurate. Most of my health improvement started when I got this test done. I was already grain free.

      Reply
  24. 24

    Allison

    I would like to respond about the cheating comments out there. I too have celiac but the scary, “silent” form. I wasn’t having intestinal issues from the celiac but persistent acid reflux which led me luckily to a GI doctor who decided to do a endoscopy and surprise: Celiac! Caught me totally off guard. As much as it has cleared up other problems (anxiety, depression, roseacea, back issues, acid reflux, anemia, B12 deficency) do you know how hard it is not to cheat when your body doesn’t give you the same signals that other celiacs have? I’ve never straight out cheated. The closest I get is not giving the food service people the third degree about CC.

    After almost 18 months GF I might respond differently but whatever response I may have would probably be pretty mild. I’m part of a very, very lucky few who got diagnosed when I wasn’t chronically sick. Some days it feels like driving down the road without any stop signs. And that can be very scary. Thankfully my 2nd scope after 6 months GF showed normal villi and blood work continues to show normal antibody levels. And even better my diagnosis led a friend to retested for it and get a positive diagnosis causing her to go GF at the beginning of her 4th pregnancy.

    But because I don’t suffer I can’t get my family to be tested and I’m pretty sure there are others out there. When you feel “normal” why would make a leap that so many say to us “I could never do what you do”. Half of me doesn’t blame them and have of me is so angry. So you want to be an ostrich? Then I can’t help you but I’m sorry that you might die 10 years earlier than you need to. I’m pretty sure my family is part of the vast group of undiagnosed.

    Don’t forget about the “silent” majority who can’t empathize with the brain fog and vomiting, etc but that doesn’t mean we don’t struggle in different ways.

    Reply
    1. 24.1

      IrishHeart

      Hon, if you had: “anxiety, depression, roseacea, back issues, acid reflux, anemia, B12 deficency”–you are hardly a “silent celiac” IMHO

      You have plenty of overt symptoms and have suffered in very obvious ways. I am glad you are feeling so much better !!

      I do not think there are “degrees of celiacs” —with people with more symptoms as being “more of a celiac” than those who do not have intestinal issues. This is just my opinion, but as far as I am concerned,
      this is one big boat.

      Reply
      1. 24.1.1

        Allison

        I agree, that in retrospect there were a lot of signals, however, like many people they could either be excused away or are tangentially connected. I could go on a whole tangent about which of my “symptoms” I thought were directly connected and which ones were exacerbated by the systematic inflammation.

        My comments were directed more towards those who expressed shock and disbelief that someone would cheat. Well, when you don’t get acutely sick for 2 weeks after ingesting 20PPM then the motivation to stick to a 110% GF diet slips a little. It’s hard for me to understand how the people on the left side of the boat feel and I’m sure the people on the right side of the boat don’t understand how I feel despite being in the same boat (to use your language).

        I agree we’re all in the same boat but I sometimes feel from reading this blog and others that sometimes those with the “classic” symptoms forget that there are others out there because we’re less visible or vocal (not quite the right way to express it but that’s the best I can do at the moment). I don’t have stories of knowing every bathroom between here and there, etc. But we have all suffered in our own way and all have our own story.

        Reply
        1. 24.1.1.1

          Gluten Dude

          Allison…please don’t beat yourself up because you don’t have the same symptoms as everyone else. You’ve got celiac disease. Gluten damages your body just like it does mine. How we react is almost irrelevant. We’ve all got a serious autoimmune disease that needs to be taken seriously and treated with a 100% gluten-free diet. You do not have “less celiac” because you have less symptoms. No need to feel like an outsider.

          Reply
          1. 24.1.1.1.1

            IrishHeart

            Allison
            I do not know who would treat a fellow celiac any differently because of their symptomology, but I assure you, I am not one of them. :)

            In fact, I admire those of you who have to work extra hard at avoiding CC for the very fact that you DON’T have a loud alarm system like bad gut symptoms.

            My friend B. is like you and her only symptoms (that even made sense in retrospect) were frequent miscarriages. No one was more stunned than she was when she found out she had total villous atrophy. She sticks to the diet 100%— but as she says, she hopes she is doing all the right things because she can’t really tell. .

            Reply
            1. GF and More

              I entirely agree with IrishHeart. Staying vigilant with the different symptoms must be so hard. I admire you for that, and would never dream of separating celiacs’ efforts or experiences or struggles based on symptoms. We are all working through this and trying to do the best we can.

              Reply
  25. 25

    Yvette

    I thought I was going to be one of the “less celiac” ppl because my biopsy number was not off the chart high. I took it very seriously and ate at home mostly for the first month or so. Once off the gluten my reaction is so severe when I am glutened I can barely function for a few days. It takes about a week to completely recover and to feel like myself again. I miss work multiple days a month. Thank god for Fmla or I would not have a job at all. I have developed allergies to just about everything and am covered in hives if I don’t take rx antihistamine. Oh an had my first anaphylactic shock experience to some type of nuts most likely. I feel like my health has just gone downhill since I’ve been gluten free and I don’t understand what’s happening to me. I hate anyone has to go thru this and constantly worry about all of the other health problems that can develop. But I’m glad to know there others like me and I can come to this blog and learn so much from everyone.

    Reply
  26. 26

    Janet

    Yvette, I once thought that all of my kids had celiac disease, but that it must have skipped me. I didn’t have any gut issues, and wasn’t aware that the headaches and anemia and “sensitive skin”, and rashes and canker sores and cold sores had anything to do with what I was eating. When my daughter convinced me that constipation was just as much of a symptom as diarrhea, I took wheat out of my diet. I felt better in a few weeks, but kept getting “glutened”, or so I thought. It was after I went to a naturopath for testing and found out that I had secondary issues with corn and soy that I began to really improve.

    However, I am like you: I react almost immediately, within 20 seconds of eating something wrong. I get immediate, stabbing pain in my gut. I feel exhausted for weeks after eating something wrong. I get joint pain and muscle pain and all sorts of other symptoms.

    Some of our kids react two weeks later, which makes it extremely difficult to know exactly which food they are reacting to. I prefer my instant pain, because I know then what to avoid.

    Last night, I had a spoonful of Greek Yogurt, and reacted. I picked up the container and realized I purchased the wrong one… this one had cornstarch, which is BAD for me.

    My suggestion is that you go to a reputable naturopath and get tested to find out what other foods you should avoid.

    Reply
  27. 27

    Valerie B

    Yvette: At one time I restricted my food to items I ABSOLUTELY knew were GF and then added ONE item per week. It’s so important to get the gut healed. Once it’s healed, then the occasional slip-up isn’t earth shattering. And I’m not talking about eating a wheat brownie or cookie. I’m talking about the occasional contamination issue from a restaurant.

    My father died from colon cancer in 1979 due to unrecognized celiac disease. I realize this will sound crazy, but he went to a lot of trouble to make me understand that I had celiac disease and what I needed to do.

    Eating together with friends (breaking bread) is one of the most common ways of connecting with others in this culture and many cultures and celiac disease certainly limits that. But maybe it will help to think of this challenge as a way to learn other ways to connect.

    Always trying to look at the positive side.

    Best regards, Valerie

    Reply
  28. 28

    Martha

    I’m not celiac , but I’m sensitive , trying to move all my family to GF , but its really hard. My son is allergic and reacts getting eczema . I can say that I’ve eaten bread twice these month .But sometimes I wonder I just found out that I have Vit D and Iron deficiency . Additionally last year I suffered of TAR – Throat Acid Reflux . and it is almost 100% better with diet , juicing and also I’m drinking warm water with lemon juice in the morning .I was suppose to see my regular Dr for a follow up , but I’m moving to a Naturopath – that can take in consideration all my issues for a proper diagnosis .
    additionally I’ve been having some joint paints and are clearing up since I started juicing. I an not wait to go to the naturopath to se what is the prognosis . For now trying to do the best . My body talks to me and I understand what is not good for me . Wish the best to everybody with the Celiac battle .

    Reply
  29. 29

    Sharon

    Thank you, Gluten Dude, for this post. I discovered your blog and this post through the Facebook site of Amy Meyers, MD. My condolences to all the people (so many!) whose family members have died. I can relate. My mother had severe RA and was allergic to wheat but she refused to stop eating it. I tried so many times to get her to stop eating it but had no success. She eventually died from Alzheimer’s disease. A horrible death and yes, as several people have mentioned, the family and friends of the person suffer greatly to see someone they love die so horrendously. I was diagnosed with Sjogren’s Syndrome 23 years ago and stopped eating gluten 17 years ago. No doctor ever mentioned to me the connection between gluten and autoimmune disorders, but I suspected that gluten was not good for me. So i stopped eating it. The Sjogren’s was asymptomatic for years until I contracted Epstein-Barr virus. It became active then, but considering how long I have had it, I have a mild case. Cheating is totalling not a option for me. The only person you are cheating is yourself. Food is just food.

    Reply
    1. 29.1

      IrishHeart

      Sharon,
      Sjogren’s is most definitely related to celiac. (as is RA).
      My good friend has it, along with celiac and 2 other AI diseases (hypothyroidism and Raynaud’s).
      You are probably a celiac IMHO.
      You are so wise!…it is just food….and there are so many foods to choose from, who cares about gluten? I know I don’t.
      So sorry about your Mom.:(
      My first wonderful MIL died from complications of Alzheimer’s and there is no doubt in my mind she also had celiac. What I know now? I probably could have saved so many people I love. sigh.
      This is a worthy foe, this celiac beast.
      Blessings to you, IH

      Reply
  30. 30

    Hannah

    Does anyone know deep down that they have celiac but never actually got a confirmed diagnosis? Almost two years ago I hit my highest weight, had such bad joint pain I could barely walk, all the typical gut issues, mood swings, migraines, canker sores, skin irritations, fatigue, puffiness, dark circles under my eyes etc. Did I mention i was only 28 at the time and not 80!? Thank God for my boyfriend (now my husband :) who was diagnosed with celiac 14 years ago! He convinced me to try eating GF for a couple weeks just to see if I would feel better. Within two weeks, I felt so much better! My joints weren’t hurting, my stomach was starting to feel better, I dropped like 10 pounds and my face wasn’t as puffy! I obviously kept eating GF but about a month later got glutened by CC. OMG I was so sick! That was all the confirmation I needed and have been GF since. I’ve lost 60 pounds and feel great. My doctor won’t confirm that I have celiac but says I clearly have a sensitivity, based on my elimination diet. Any thoughts? As for the whole cheating thing… Anyone who cheats on their GF diet doesn’t value themselves or life enough. I could not purposely eat something with gluten knowing how sick I get. It’s just not worth the risk to me. And I’m so sorry to everyone who has suffered or lost loved ones. We are pretty sure that my husband’a mom had undiagnosed celiac and it is part of why she died so young of cancer. (His sister also has celiac. Clearly it runs in the family!)

    Reply
    1. 30.1

      Hannah

      (Forgot to mention, I also had very low vitamin d levels, hypothyroidism, anemia, and PCOS. My vitamin and iron levels are good now and my low dose thyroid meds do the trick to balance that issue. I have read several blogs by women with celiac that also have thyroid issues and PCOS/ fertility problems. Anyone know anything about this too? Thanks in advance!)

      Reply
  31. 31

    TheNextMartha

    In my 8 month GF life I have not once thought about cheating. NO. I get way to sick and needing a month to recover is reason enough. I didnt’ know this link though. Scary. I’ll stick to sniffing bread bags thankyouverymuch.

    Reply
  32. 32

    Doug

    Maybe someone can help me interpret the statistics reported in the Columbia link. If the annual likelihood of lymphoma for a person with celiac and healed intestines is 31.5 per 100,000, what is the risk over 70 years? Is it still 31.5 per 100,000, or is it (70*31.5)=2,205 per 100,000?

    2,205 per 100,000 is about 1 in 50.

    I’m asking because a grandchild was diagnosed at age 4.

    Reply
  33. 33

    Paul

    I’ve just been diagnosed will coeliac disease, just before Christmas, it’s deffinently been a culture shock what I can and what I can’t eat, but luckily my diet haven’t changed too much, how long does it take to get back to normal coz I my legs still feel tired some days, and I know I’ve been careful, it’s just good to talk to other people with the same disease :)

    Reply

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