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  1. 1

    Lisa Mims

    To the person concerned about having celiac kids: both my siblings are gluten-intolerant, an aunt has had celiac for fifty years, and my father figured out that he is gluten-intolerant, at age seventy. Everyone goes to gluten-free restaurants when we go out, shares recipes, and e-mails each other the latest research. (And our spouses commiserate about having to sneak sandwiches.)

    It’s so much easier having relatives that are NCGS and celiac. Have kids: it’s like growing your own gluten-free support group–and if they do have celiac, it will be much easier for them than it was for you, because they have you to help them with it.

    Reply
    1. 1.1

      Gluten Dude

      “Have kids: it’s like growing your own gluten-free support group.”

      I like that :)

      Reply
    2. 1.2

      Else

      I am7 months pregnant with my first child and while I hope he never develops Celiac, I know we will be able to deal with it if he does. When I was first diagnosed, my mother was so guilt ridden thinking she had passed this on to me. I told her i would rather have good parents and bad genes, than bad parents and good genes! There are so many unknowns when we have children that all we can do is take care of ourselves and trust that all will be okay. There are so many worse diseases than Celiac.

      Reply
  2. 2

    thetxlady

    Trying this again, dudes blog ate my homework :(

    Starbucks- 2 important things to remember: you can only be walked on if you lay down & invite people to do so (this disease requires a thicker skin) & 2 realize you aren’t dealing with an adult, but a chronologically advanced child. Adults don’t need to use students to bully others!! Yes you are being bullied!
    As its the last day of school here, suggestion is next year offer a skit/program/kit on preventing bullying. Include all the usual reasons: too tall/short, fat/skinny, glasses, weird food & include kid to kid some of the things that were hurtful to you. Sometimes adults need to be reminded they are acting like children.
    ————
    Military mom- one dependent to another, thank you for your service (yes I mean you not just your husband) look up dudes travel kit of essentials for sharing a vacation kitchen. Offer to help with meals, avoid soy sauce/tariyaki marinades & show hosts that “real whole foods” are the easiest thing to make. Might introduce healthier eating habits.
    ——–
    Military teen- celiac disease is just a fork in the road for you, not the road block you’re making it out to be… yes traditional military is out, but there are so many places the same work you’ve been doing can be utilized. Police, FBI, any of dozens of government contractors immediately come to mind.
    As for the medical MJ thing…I live in colorado. MJ DOES NOT FIX CELIAC DISEASE!!! As for pain, if you’d stop eating pizza, donuts & gluten cake while feeling sorry for yourself that pain would magically go away.
    You are at a critical cross road & only you can decide if you continue on the fork of public service, duty to country & clean living OR
    Go down the rabbit hole of drug fueled self pity that leads to the gutter. Medical pot is $500 an oz here, legal or not NOTHING costing $2000+ a month is going to help you get & keep a job in government or public service. They do hair, blood & skin samples for a reason!

    Reply
    1. 2.1

      Miss Dee Meanor

      To your comment “Go down the rabbit hole of drug fueled self pity that leads to the gutter. Medical pot is $500 an oz here, legal or not NOTHING costing $2000+ a month is going to help you get & keep a job in government or public service. They do hair, blood & skin samples for a reason!”

      Did you hear me clapping over here? Amen, Sister.

      Reply
  3. 3

    Gillian

    To the high school senior, I went gluten free for Celiac three years ago, then a year later completely grain free because I still had discomfort. This past few months I too have had cramping and some nausea. Turns out it is probably IBS. So on the advice of my naturopath, I have given up certain fruits and vegetables (fodmaps) and voila! No more stomach aches etc.! This disease (celiac) seems to be an ongoing issue, not just “give up gluten and you’ll be fine!”
    ,

    Reply
    1. 3.1

      Gluten Dude

      …which is what so many out there profess. Exactly why I started this blog.

      Reply
  4. 4

    Comrade Svilova

    For traveling, depending upon how long you’ll be traveling, bring your own cutting board, small pot, wooden spoon, etc. If it’s a short trip, just pre-make a lot of meals and pack them. On short trips I bring almost all of my food, making a trip to the store for perishables once I’m there. Usually have to spend a lot of time reassuring family and friends that I’m all set and have my own food, but it takes the worry and stress out of visiting folks.

    Reply
  5. 5

    thetxlady

    Insurance- statistically celiac is still linked to cancer that costs them money. Much like someone with diagnosed heart disease, you’re just going to pay more because the disease we carry around kills people! That’s bad for their business :(
    ————
    Magic beans- friends & family sometimes TOO helpful, want to “help us be normal again” they forget that life changing disease often means finding a NEW NORMAL. Keep do what you’re doing & realize he has magic beans he’s trying
    To sell you & keep walking!
    ———–
    GF boyfriend- if he’s had this for YEARS & you’ve been together months THIS ISN’T YOUR DEAL!!! An adult unable to cope with buying their own groceries, making their own food & not using guilt to manipulate a partner they chose that travels for work, HAS BIGGER PROBLEMS!! You aren’t his mother, you can’t “fix this” no matter how good your intentions & his getting sick easily could have to do with him having additional reactions he didn’t disclose (other grains, dairy, whey, malt, soy) as easily as it could be something else…like the real beer he had at the bar on the way home.
    My view is this ship is going down due to circumstances of his own making & disfunction abounds. Myself, I’d dump him not because of his disease but his inability to be a full partner able to take care of themselves in my absence. Google “co-dependent” does any of that look familiar?
    ————–
    Gluten newbie- umm celiac doesn’t cause morning sickness, babies do. Cramping also leads me to not celiac if you’ve been following a proper diet. Being shocked you’re in high school DOCTOR NOW!!!
    A+b+c isn’t all celiac symptoms & if you’re getting proper care & following a proper diet, you shouldn’t still need a bunch of pills for nausea & intestinal discomfort.
    Food envy? Never goes away! Good luck, seriously get a check up today.
    ——–
    GF cereal- one of my favorite marked GF cereals chex, really isn’t!! Look at the label… malt, barley extracts & being packaged on machinery that also handles wheat easily could be the culprit. Plastic isn’t my personal preference for storage that might get cross-contaminated… but no he isn’t likely to be reacting to a new plastic container.
    ————–
    Baby making- this is probably going to sound meaner than my intention, but here goes…this disease killed my babies, robbed me of my fertility & ruined more than one relationship before i got diagnosed. I actually have looked into foster parenting specifically for celiac children because I know what to do, know what this feels like & already have the GF kitchen to keep them healthy.
    Why in gods name if you have the ability to even attempt to carry a child would a non-fatal disease you know what to do with be the sole thing that keeps you from having kids? I don’t wish miscarriage on anyone & strongly recommend celiacs of “breeding age” (sorry no other way to put that) to see a reproductive endocrinologist before they start trying, but friends wife helped get diagnosed had a healthy 7lb boy at easter. It is possible! Not easy, not a cake walk, but possible if you can get out of your own way. This disease hands us enough road blocks that can’t be moved, why create them where no evidence exsists they are real?
    Endo that actually diagnosed my celiac said “you don’t know for sure if you can or can’t get pregnant with this until you try” (yes she said that before I told her about miscarriages). We aren’t talking about a fatal genetic condition here, adoption is great & kids need homes but forcing that choice on a partner because you don’t even want to try is pretty cruel.

    Reply
  6. 6

    Cynthia L

    Hi GD. Hope you are are making a full recovery from the gluten whack. Do you know what/how you got whacked? Reason I ask is if someone as knowledgable as you can get poisoned I don’t stand a chance.
    i want to attend my grandchilds 2nd birthday party this October and have done nothing but stressed myself over this for two weeks since told of the plan. It is being held 200 miles from me and all of us will be staying in hotel. I have no idea how to plan for my meals and i sure do not want to be a downer on others of where we eat. I attended a baby shower and the only thing for me to eat was cheese. I have such fear i will get sick if i go but i so want to be part of the celebration. but alos want to be able to make the 200 mile trip back home without spending another week or so laid up sick and with the oh so fun rash. so do i go and enjoy while i can and deal with the aftermath that i fear will happen or stay home and not be sick but miserable that i missed out? Is this how you get sick by just taking your chances ad pay the price later? It’s been two years since i was at death’s door in hospital when I was finaly diagnosed with celiac and I have only been out to eat a few times half of which i got sick. so now never eat out but going away really frightens me.
    appreciate any advice you can offer.
    stay well GD gentle hugs

    Reply
    1. 6.1

      Gluten Dude

      My best guess is a place in NYC that I’ve been to numerous times. Waiter was a complete tool. Who knows? Happens to the best of em ;)

      Reply
    2. 6.2

      thetxlady

      What GD meant to say is: travel is possible with a plan. New tupperware, portable cutting board & hotel with a mini fridge or DC powered car fridge are a good idea. Don’t be afraid to take along your own food, stop at a grocery on the way & pack your own bars.
      Salad, lots of salad is the usual answer to going out with others. Knowing what foods you react to is also a wise idea…corn salsa for example will cause me joint swelling but tamales I’m good. Don’t be afraid to make something & bring it along. Budding sliced meats for example are GF & pre portioned. If I’m sick of the 1000th salad I will eat this wrapped around some cheese with mini snickers bar chaser. Sabra hummus with kettle chips or carrots also make a nice snack.
      I get being afraid of “maybe” but we can’t stop living just because we have a disease.
      Stealing the shawshank redemption quote: get busy livin or get busy dyin…well that’s right”

      Reply
  7. 7

    a regular GD follower

    Wow GD… think you got us caught up on your 30/30! Sorry to hear this was a rough month for you.

    Can’t wait to hear your take on Charlize Theron… I am sure it will be classically GDesque.

    For the HS senior depressed teen – I wouldn’t necessarily say there is a direct link between CD and depression (although the jury is still out on that one), but you have a big strike against you right now for feeling your best, feeling like you fit in, being social with your peers, etc – and in your teens, that can be A LOT to handle. Chin up… and if you really feel like you can’t get above it, then seek professional help. Sometimes we need to kickstart our emotional well being to get it in gear – especially when navigating this GF world, teenage angst, etc. Pain and nausea should not be still present if you are sticking to your GF diet – but also keep in mind topical things like lipstick, chapstick, moisturizer, etc.

    And lastly – for the one contemplating having or not having children. This is my story… my husband has a progressive neuromuscular disease – that at this point is still undiagnosed. We have done genetic counseling, tests with the leaders in the research community in the US and Europe. We decided since it was still largely unknown whether it would be passed on to our children, we went the donor sperm route. And after all of that, we ended up with a child with celiac disease. It is unclear at this point whether or not our child inherited from my side of the family or the donor’s as there is no known history at this point. Her diagnosis came AFTER I had my second daughter from the same donor – but at this point she has not developed CD. Your children may go their whole lives without the autoimmune disease ever getting triggered – or you may have to face it all at once. But there is no guarantee that if you go an alternative route, that you won’t be dealing with something else. Although I was saddened to learn of her early CD diagnosis, really… a disease that can be treated by diet seems like a small price to pay for my beautiful family! And at least you know now how to keep your future children safe from gluten! Good luck to you!

    Reply
  8. 8

    Jenny Bean

    Hey, Insurance Guy – you know how people are ignorant about our disease? This can work in your favor. Do what I did – get another Celiac Panel blood test. It will come out negative since there is no gluten in your body for your antibodies to react to. Show the negative test results to your insurance carrier with a flourish and say, “Ta-da! Cured! Give me the healthy people rate!”

    As to Fertility, Babies, Etc. – Fertility is one of those things where you can’t know how good you are at it until you try. Same with everyone else on the planet. I was diagnosed at 21. Had a 9 lb baby at 30. Then my thyroid blew out. Had a miscarriage at 32. Had a 10 lb baby at 34. My older child has been having lots of vague health complaints for awhile. Even though her celiac test came back negative I took her off gluten. It is challenging but not life-altering. She is a very happy, sweet kid who will move mountains and will not regret being born.

    Reply
  9. 9

    Gloria @ glutenfreepoodlehome

    For the celiac wondering about having children. I was not diagnosed until I was 40 and had both my children tested. One had celiac. She was 14 and was used to having a bunch of GF food in the house so to switch to 100% was not that bad. At least, having a celiac Mom she did not have to go through life sick, being diagnosed at 40 and having a ton of issues that won’t go away. Also if a kid is celiac, having a celiac parent who understands is great. Now, as an older adult I have to say going to my celiac child’s house and eating her gourmet cooking is pretty awesome. My main advice is always have a good attitude about your celiac. I considered my diagnosis a blessing and that made it easier on my child. P.S. I did cry buckets in private when she was diagnosed. And moved on.

    Reply
  10. 10

    Stephanie

    Dear Dude,
    I’m sure you have seen this already – it has become my mantra

    http://www.pinterest.com/pin/492018328013174991/

    Reply
  11. 11

    Sarah

    Cross-contamination can happen from a plastic container if it was used to store a regular gluten cereal or other product and wasn’t properly cleaned before being used to store the gluten-free cereal. I’ve been glutened by a cereal container that wasn’t washed before putting the gluten-free cereal in, and I’ve been glutened by dishes/utensils that weren’t properly cleaned as well. They need to be cleaned in clean dish water and with a clean dish rag (no chance for any gluten to be in either of them). The best way, though, is the dishwasher. I always use my dishwasher when I think there’s the smallest chance that something with gluten on it ends up in my sink.

    Reply
    1. 11.1

      Sarah

      I wanted to add that it’s important to keep your sink basins clean as well. I scrubbed mine out with Brillo pads initially and now wipe them down between washings with disposable wipes.

      Reply
  12. 12

    Betsy

    Re: insurance: Maybe there’s a reason to rejoice if you don’t have an “official” diagnosis! And I agree with Jenny Bean about the Celiac Panel blood work. When applying for life insurance (shop around) it is never recommended to “volunteer” information – they ask enough questions to get the info they want (I actually found it odd that my recent shift in life insurance providers did not ask about any surgeries – many, but minor, like c-sections, hernia, negative biopsy, sinus, etc.). I did not find it necessary to volunteer my fibromyalgia or Meniere’s (the latter of which is environmental allergy induced, anyway) and I got the healthy person rate (and I am almost to the point ,after going GF and DF, where I’d say my health is excellent, whereas for years I only said “good”).

    Reply
  13. 13

    John

    Gluten Cutter? Feh.

    Echo & the Bunnymen warned us about this stuff… all the way back in 1983: “Spare us the cutter, couldn’t cut the mustard!” :)

    http://www.youtube.com/watch?v=Y2ItNtCMgqc

    Reply
  14. 14

    Nichole

    To the senior in high school im a junior and was just diagnosed a couple of months ago and i also have really bad morning nausa too. Ive been sticking to a gluten free diet but havnt seen much improvemnt. I kinda feel like it will never go away. Just a question for anyone out there, how long did it take for your stomach pain to go away?

    Reply
    1. 14.1

      Musicmidget

      Nichole, it really varies on how long it takes to feel better. You are young and that is a definite advantage. You have sustained some damage, but likely not as much as those of us who are older and have a lifetime’s worth to try and reverse. On average, most celiacs can take up to about 6 months to see noticeable improvement. You may feel it sooner than that, or you might take just a bit longer. If it takes longer, don’t be discouraged. Just stick with the diet, make sure your nutrient levels are ok (if your doctor hasn’t checked those already) and avoid processed food as much as possible. It may not seem like it, but it does get easier. Hope you feel better soon!

      Reply
    2. 14.2

      thetxlady

      Agree with the 6 month standard but would add its entirely possible you have additional issues:
      1) A STRONG 6 billion+ probiotic will help gut to re-adjust faster
      2) ENSURE you aren’t taking stomach remedies with flour in them (tums & generic advil for instance)
      3)Food diary- this will help identify dairy, soy & additional grain issues
      4) Check the bathroom for gluten- shampoo, body wash,vitamins, tooth paste, chapstick, make up

      Most people start feeling some improvement within a week & gradually improve from there. Its possible (& normal) to have 9 (more or less) additional auto immune diseases related to the celiac.

      Reply
  15. 15

    Barry Zerro

    Study shows link between gluten intake and depression From the Doctor who said Gluten Sensitivity is FALSE, Dr. Peter Gibson http://www.abc.net.au/worldtoday/content/2014/s4012012.htm

    Reply
  16. 16

    paul berty

    Liz Smith finds Charlize Theron’s Commentss funny. I did not find them funny. http://www.telegram.com/article/20140529/COLUMN87/305299961

    Reply
  17. 17

    Amber

    love LOVE your blog gluten dude :) You tell it like it is, and that is quite refreshing, as for your recent being glutened, I am SO sorry, sending healing vibes your way and wishing you well!

    One part of this post REALLY hit home for me
    “you can’t fix ignorant either. I will never, ever understand why people care so much what we eat. ”
    I don’t understand it either, why do others care SO much, to the point they judge, make us feel bad, or think we’re faking it! PLEASE if I could freakin’ eat the bread and pasta and cookies before me, I WOULD, but I can’t, period. I just wish those who were so ignorant and critical, could switch places with us for a day, just to see, and then they’d understand!

    Reply
    1. 17.1

      Gluten Dude

      Thanks Amber. Look for my “Why the hell do you care what I eat?” blog post coming soon.

      Reply
  18. 18

    Sour Melissa

    I’m only going to comment on the final letter here. My boyfriend and I have talked about one day having children. Am I worried a bit about passing celiac disease to my future children? Of course I am, but that’s manageable. I have to be gluten-free anyway; it won’t be hard, if the situation arises, for me to put one or more of my kids on a gluten-free diet.
    Both of us are much more concerned about the fact that he’s had a particularly aggressive cancer that is genetic. He’s lucky to have survived twice (and be four years cancer-free now). He doesn’t want to ever put a child through the chemo, surgeries, and fear that he went through, and I don’t blame him. All we can do is genetic testing and go from there.
    I promise you, there are much bigger things you could pass onto your children than celiac disease, and people face them every day. I wouldn’t let it stop you from having kids of your own. You’ll know how to manage celiac or NCGS if it happens to one or more of your children.

    Reply
  19. 19

    CD

    “I recently started a new relationship and my partner is Celiac (found out at 23/24 – 4 years now). Poor bugger. Naturally every time I had him over for dinner or on a date, I always ensured the the meal was gluten free. but somehow he always ended up in some pains. This has been quite hard lately as I have been interstate for work and he is alone at home. The burden of food shopping, preparing his meals and choosing what drinks he can have when he goes to a bar (as they most certainly do not stock GF Vodkas) has really gotten to him and he has become a shadow of his former self. Gluten Dude – is there a correlation between Celiac Disease and Depression? I try to remain a positive influence in his life, but every time he discovers another thing to add to his “cannot have” list, it hurts him even more.”

    I wanted to respond personally to this email Gluten Dude.

    Is there a correlation between Celiac and depression? Yes yes and yes! I suffered from severe depression for 20 years whilst being undiagnosed and for several years afterward my CD diagnosis while trying to learn and manage the gluten free diet. My wonderful GI doctor explained to me that the entire body is starved when gluten attacks the villi in the intestine and causes the body to be unable to get the nutrients it needs. That means that the brain is literally being starved as well as the body. When the brain isn’t getting the nutrition it needs, depression ensues for many people with CD. It is not an uncommon symptom of CD.

    Being gluten free now for 6 years has brought me back to full health and I have recovered 100%. I am no longer depressed. I don’t need psych drugs or any of the garbage the medical community pushes on people. I am healed by diet alone and that is a beautiful thing and something worth celebrating. But, it took time to heal. It will happen, don’t lose hope.

    Reply

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