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19 Comments

  1. 1

    Laura

    Thanks GD for this post.

    In answer to your question, “what will you do to spread awareness?”, I just posted a mulit-paragraph post on Facebook about what I went through while waiting for a diagnoses for 5 years. I’m not super open on FB because I don’t want all my personal stuff shared to everyone like that, but this time I put it all out there. Things that no one except very close friends and family know. Hopefully it will open the eyes of some people and maybe even encourage them to get tested themselves.

    For the whole month, I haven’t decided what I’ll do yet. I’m thinking of posting my dinner each night, but that’s not very interesting, and it’s about food again. So, I’ll have to think about it a bit this weekend.

    Thanks again for your words.

    Reply
    1. 1.1

      Gluten Dude

      If you open one person’s eyes…you done good.

      Reply
    2. 1.2

      Kathleen Marie Labranche

      I was diagnosed with celiac disease fifty years ago. I was able to tolerate wheat for a short time (I thought I could, anyway) and I wound up with irreversible rickets and short stature. The re-diagnosis confirmed that, with the caveat by the GI doctor that this is a forever problem. My family had to be educated again after I became extremely sick after visiting home and eating some casserole which I think was the culprit. I checked the ingredients, seemed safe enough but cross-contamination is a real problem. Twenty parts per million seems like a tiny amount, but it is a measure of the molecules that can damage the gut and begin the inflammation cascade. I had a long drive home, but almost didn’t make it.

      I spent 2 nights in a hotel, unable to drive, and was only able to get home after an ER visit and large doses of prednisone. The other insult occurred at Thanksgiving, this time with my husband’s family. I made side dishes not only gluten free but lactose free as well to protect my sister in law. Despite all the care we took to make that dinner, on the way home my husband had to pull off the highway and hold my hair back while I lost my dinner. It happens fast, doesn’t it? Anyway, we didn’t want to tell them that I got glutened and sick, but when the subject came up we learned that someone had made a sandwich on the cutting board used to prepare other dishes.

      We made gifts of dedicated cutting boards to our families, thanks to their popularity in restaurants. They are purple and hard to mix up. I don’t travel with my cutting boards, and I don’t assume that those purple ones haven’t become contaminated. The upshot of all this? We’ve talked to many chefs. Our favorite restaurants have staff that tell me about iffy foods, even those on the menu that are GF. I’ve got a NIMA device that detects gluten and fits in a pocket.
      Holidays make us especially vulnerable I think. Educating the family has helped.

      The term “gluten free” is being replaced with “zero gluten” according to the new journals. I hope that concept spreads quickly.

      Reply
      1. 1.2.1

        Pippy

        May I make one correction please? “Twenty parts per million seems like a tiny amount”. I believe it is less than 20 parts per mil. to be safe. I am sure you likely meant to say that :)

        I learn so much from what everyone says here, I like the “zero gluten” much better as well.

        Are you enjoying your NIMA? If food comes back laced, what do you do? Send it back? How does the restaurant react?

        Reply
  2. 2

    Aimee

    This is so amazing! Thank you thank you thank you! I have followed your blog the 3 years since my diagnosis and you are always helpful. Keep it up :)

    Reply
    1. 2.1

      Gluten Dude

      Good to know…thanks!

      Reply
  3. 3

    LuLu B

    Hey GD,
    One of the most common symptoms NOT mentioned, because people probably don’t want to talk about it, is having LOTS of GAS or FLATULENCE! My sweet mother, who has since passed away, couldn’t walk across the room without playing a tune. I remember buying her a button that said HE WHO FARTS IN CHURCH SITS IN HIS OWN PEW. She wore it everywhere and thought it was hysterical. SO, if anyone has lots of gas no matter what you eat, read up on celiac disease. Getting the gluten out of your diet MAY solve the problem, but don’t go gluten-free until after all testing is completed or you may get a false-negative test result.

    Reply
    1. 3.1

      Gluten Dude

      Gotta love the fact she had a sense of humor about it.

      Reply
  4. 4

    Jeanne

    THanks, GD, as always. I don’t like to publish a lot of personal stuff on fb, but I decided this merited it. We can help ourselves encounter less ignorance toward our disease by spreading information!

    Reply
    1. 4.1

      Gluten Dude

      Indeed. Thanks Jeanne.

      Reply
  5. 5

    Deb

    Ditto the thanks … will pass this around. I have been trying to get my non-Celiac “friends” to understand that my illness is not just about eating whatever claims to be gluten free and then I am fine. I am rarely “fine” … even though I eat clean food. I indulge every so often on some GF “goodie”, but I know I shouldn’t and my body knows when I do. It really is difficult to be truly GF in this world, especially when you have to take medications for other diseases. Thanks to nobody caring about gluten in medications, it is nearly impossible to get a guarantee that medications are totally gluten free. Unless you are a hermit, take no meds, never, ever eat food cooked by someone else, and have a home that is 100% gluten free, the chances of getting glutened are pretty high … hence the rarely fine.

    Reply
    1. 5.1

      Gluten Dude

      The medication!! Such. A. Pain.

      Reply
  6. 6

    Lydia

    Thank you for this post and all that you do for this community. It is comforting to me just knowing you are there for us. What I want people to know is that this disease is a monster that gives birth to many beasts. When the beasts attack, they are vicious and have no compassion. Not looking for sympathy; just understanding. The information isn’t out there; just do some research. We celiacs did not ask for this; this is the hand we were dealt, and we are playing for our lives.

    Reply
  7. 7

    Jen

    Thank you for this post, I just shared it on my facebook timeline and I can’t wait to read more of your blog! I have to advocate for myself and my son, both of us diagnosed not quite two years ago. In addition to the CD, I was diagnosed with Hashimoto’s hypo-thyroidism a few years ago, I wish more had been commonly known about potential connections to CD then.

    Reply
  8. 8

    Cali Celiac

    This is my first Celiac Awareness month since being diagnosed so I decided to share with some of my coworkers what CD is and some of my personal experience with it. A couple of them seemed annoyed, but only 1 person I shared with knew what CD was (she has a daughter in law and 3 grandchildren with CD). I got the “oh, the gluten thing” response from some. I also shared on a couple of web sites comments pages. On Media Matters I got 3 respondents who have CD and thanked me for the post. It’s only a drop in the bucket, but if we all put a drop in the bucket eventually it will be full.

    I’ve been GF for 8 months now and still feel pretty crappy, so started cutting out dairy last week (Damn, but I miss the cheese and I haven’t been able to give up the half and half in my coffee yet). I’m gradually eliminating GF replacement foods and trying to consume more whole foods, but as a hard core foodie it’s been a struggle to change 58 years of eating habits. And I won’t even mention the BEER! OK, I mentioned it, but oh how I miss the darks, the sours, the red ales, the stouts, the Guinness, the Smithwicks…… Sigh! I’ve found 4 palatable GF beers available here in stores, but haven’t found a single restaurant in the greater Sacramento area that carries any GF beers. Clearly, us Celiacs are being discriminated against. There ought to be a law.

    Thanks to the Dude and the community here for the support, humor and info. You all have a grand GF day!

    Reply
  9. 9

    Vicki

    Thank you for everything you do for the Celiac community. I just shared your post on Facebook. I was diagnosed with celiac in 2013, and many people around me still do not understand it. I am so tired of being asked questions like “How serious is your allergy?”….”Can’t you just cheat once in a while?”…..”Why can’t you just take some medicine and get over it?”…. “Did a doctor actually diagnose this?” I still don’t think my supervisor at work believes that I have celiac, even though I’ve told him several times and explained what it is. Mostly he just rolls his eyes and smirks when tell him I have to take a sick day because I have diarrhea, stomach cramps, all-over pain, or a killer headache.

    Reply
  10. 10

    G

    I have recently told several people in my work circle and discovered LOTS of people know someone who has celiac. Everyone calls it celiac’s, but I don’t care what is important is that they care at all. And everyone has the same story: either misdiagnosed for a long time or not at all. We are WAY more than 0.7 percent of the population. Again, the medical profession doesn’t care because we don’t make them any money.

    Reply
  11. 11

    Ana Casal

    Thank you. Thank you. Thank you.

    It’s tough enough that my son was diagnosed with Celiac. It’s tougher explaining to friends and family who are your support system, that it’s not OCD and that cross contamination is real. We are all gluten free in support, it’s really difficult and I can’t imagine at the age of 12. “Hanging Out” is something that scares me more now than ever. I have joined several groups on Facebook, I feel the need to vent to people who understand. I have friends who tell me everyday how obsessed I am. It’s so frustrating.

    Reply
  12. 12

    Ruth

    I have become a living example of the bizarre way “Sally” ordered all her meals in “When Harry Met Sally”, but I add, “If you don’t follow my instructions exactly, I will become violently ill.” Somehow, those words terrify waiters and cooks alike. I am tired of explaining that “this” is not a food allergy, a popular fad (oh yeah, going gluten-free helped you loose weight…tell the real story…you stopped eating junk food and are eating real food!), or the means to make myself the center of attention! I just want to make it through the day without all the bizarre things that happen to let me know that I have been glutenized (my word for the brutal way gluten destroys my life). I am tired of hearing people say, “A little gluten won’t hurt you.” I usually counter with, “Although what I have is an auto-immune disease, I hope you don’t tell people with an iodine allergy that eating a little shrimp won’t kill them.” In severe cases, gluten has ushered in far worse diseases, and has even caused death. I have other auto-immune diseases that I am also dealing with (Chrohn’s disease & rheumatoid arthritis) that I am sure hitched a ride because of that dreaded “poisonous” gluten. I wouldn’t wish my life on anyone and yet, I have found the challenge to eat and make something good, if not better than whatever is offered as a substitute in the mine field known as the grocery stores that we have to visit once in a while. Keep spreading the word Gluten Dude. We can educate people one at a time…eventually (at least I hope so) people will start taking us seriously.

    Reply

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