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23 Comments

  1. 1

    Danica

    In response to one of your letters above……. I am a pharmacist with celiac, and it is NOT your doctor’s responsibility to know which medications have gluten and which don’t That’s ridiculous. I would never tell a patient that. All medications come with a package insert that list all of the inactive ingredients of the medication. Sometimes we can tell just by looking at them if they are safe. Sometimes we can’t, and that’s when we (and I saw WE, meaning the pharmacy) offer to contact the manufacturer for the patient. If your pharmacy won’t do that for you, find another pharmacy.

    Reply
    1. 1.1

      Rachel

      Thank you! I’m the letter writer above, and I started crying in the middle of the pharmacy trying to find out if I could take this damn medicine or not. The pharmacy tech was not helpful, and the pharmacist just stayed in the back. They called my doctor to try to get a different antibiotic prescribed, but it made no difference since they didn’t know whether the second one was safe either! It was my first such experience since being diagnosed.

      Reply
      1. 1.1.1

        Jane

        You can look up your prescription on glutenfreedrugs.com. If you still have a question or concern, just write to the webmaster, Steve Plogstead, and he will get back to you quickly. There is a link to click on at the bottom of the home page. Steve is a pharmacist at Children’s Hospital in Coljmbus. He runs this site for us at no cost!

        Reply
    2. 1.2

      Gluten Dude

      Thanks Danica. Would you be my pharmacist??

      Reply
      1. 1.2.1

        Danica

        Yes! ☺️ I would seriously love to be available to help people with these questions!

        Reply
        1. 1.2.1.1

          Tricia

          Danica. I think you may be my pharmacist. Recently I switched pharmacies and my new pharmacist (who looks like your picture) took the time to call a drug manufacturer to make sure their was no gluten in my prescription before giving it to me. I was floored by this act of educated professionalism, kindness and compassion. As a person with celiac, I’ve never experienced a pharmacist taking the time to be sure my prescriptions were safe for me. Thank you for calling me back. My hope for all of Gluten Dude’s readers is that they find a pharmacist like you (or your look- alike :). Thanks for keeping me safe!

          Reply
    3. 1.3

      A

      Thanks for speaking up! This is how my pharmacist did it for me last time.

      Reply
    4. 1.4

      Patricia

      I tried asking my pharmacist if they would check for me & they told me, “not too many even have gluten in them & those that do are so small” I explained that I have a severe reaction to a small amount & I need to know if they will or will not be checking for me. The response was “well we don’t really have an option for gluten but I guess I will add it to the comments section”. Needless to say I am looking for a new pharmacy

      Reply
  2. 2

    Theresa

    On the fighting couple who both have gluten problems? Well, first of all–COMPLETELY GF HOUSEHOLD–a no-brainer there! Second of all…well, being a woman and a wife here, I’m trying not to dwell on how her husband appears to be behaving badly in more ways than one. You don’t use excuses for bad behavior, not even bad gluten reactions. They both need to talk together in a respectful and loving manner and come to an understanding of how they need to live their gluten-free lives, and I’m thinking that may include more than just what they are eating. She is obviously wanting things to get better and searching for help and found your blog post online where you shared how being glutened affected your body and your mood and how you recognized that and were dealing with it (with Mrs. Dude’s help!). Now she needs to discuss it with her husband. And if he won’t…would he agree to counseling?–because that’s all I’ve got!

    Reply
    1. 2.1

      D.

      Gluten has been linked to schizophrenia so its very possible it causes other mood issues. I don’t have any marital advice as my husband also needs to go gluten free but won’t because “it’s too much trouble to do at work”.

      :-(

      Reply
  3. 3

    christine

    Why don’t you like Dr Tom O’Bryan? I don’t follow him that much at all anymore and I don’t like the product mentioned.
    Just wondering your take on him.

    Thanks for all you do for our community.

    Reply
    1. 3.1

      Gluten Dude

      When he first came on the scene, I didn’t agree with something he was doing. No big deal. But then he called me out publicly. Not cool.

      Reply
      1. 3.1.1

        Jane

        I don’t care for him, either. He seems to be all about selling stuff.

        Reply
      2. 3.1.2

        christine

        Not cool or professional to call you out publicly.

        Reply
  4. 4

    Megan

    To the wife with the hubby who’s given up on GF. My husband and I just had to have a similar conversation. He was mostly gluten free, went completely gluten free, and then went back to mostly. He has no reason to stay or be gluten free technically, though I cook only GF at home. But I noticed his moods where much more uneven, something we had begun to pin on his 8 (yes…) concussions. So I spoke with him, when we were BOTH in a good mood, and simple asked that he reconsider going gluten free again because “I liked the GF guy better- he seemed nicer and happier”. And then I let him think about it… And he did come around! :)

    Reply
  5. 5

    Storme Arden

    As always, helpful to read, nice to feel less alone, good to read again about having patience re:healing. I am having a bad day physically which always seems to affect my mental health . But I am grateful to have a partner who now regards gluten as poison. And please keep blogging. You are helping.

    Reply
      1. 5.1.1

        A

        Yes, I really think you’ve helped evolve the conversation around celiac in a big way. It’s nice to have this space. Take care of yourself!

        Reply
  6. 6

    Jane

    As for oats — About 1% of celiacs react to ALL oats as if they were gluten. Our bodies think the oat protein (avenin) is gluten, and we react. I cannot eat oats. Period. Bummer.

    Reply
  7. 7

    A

    On that last letter, I can relate. I’ve been getting a lot of blame from an immediate family member- “What’s wrong with you that you think you have all these diseases, do you want to be special?” That kind of stuff.

    I’ve finally reached the point where enough is enough and I’m letting myself grieve the relationship that never was. I’ve fought too hard for diagnosis to have people bringing me down!

    It helps to talk to people who have their heads on straight.

    Reply
  8. 8

    John

    From the post: “I was diagnosed with Celiac Disease in June of this year and I have followed the diet to a T, no cheating and here I am four months later still getting the same cramping and issues that led me to the GI in the first place. If I eat, I get even sicker and feel awful. When I ask the doctor about it, I just get a new pill to try. I’m just wondering if you struggled like this also or how your journey went until you felt better. ”

    To the writer of the above.. it is possible that you also have SIBO – Small Intestine Bacterial Overgrowth. My GI says that is commonly found with Celiac Disease. It can be treated with Rifaximin, an antibiotic which is unusual in that it is very poorly absorbed, so it works mostly in your gut and has fewer side effects than one which is absorbed into your bloodstream.

    This turned out to be a significant problem for me after my CD got going. For decades, I would occasionally get sick and especially very weak, and the only thing that made it better was antibiotics. It turned out to be SIBO.

    The other possibility could be trace contamination by gluten. Be careful that no gluten containing foods come in contact with your food.

    Reply
  9. 9

    Donna

    When I was first prescribed a medication after being diagnosed with celiac disease, my doctor told me to check with my pharmacist and he would check to see if it contained gluten. When I spoke with my pharmacist, I asked him if I really needed to be concerned with this and he (adamantly) said yes, then checked with the manufacturer to make sure it was GF. I recently was prescribed antiobiotics for a sinus infection and he did this again, and also found gluten free probiotics to take along with the antiobiotics. So unfortunate that all pharmacists are not this thorough, competent, and caring.

    Reply
  10. 10

    ChrizzyT

    For the newly diagnosed…don’t give up hope. Four months into diagnosis and there are probably some hidden forms of gluten that you just aren’t aware of yet. Unfortunately, wheat is a cheap filler and is in everything. I found the section is here for Newbies informational if you have’t read through that yet. Look at the un/usual suspects, pans, sponges, counters, shampoo, body wash/lotion, perfumes, cooking spray, food, pet food. If you have any question about a food being GF don’t put it in your mouth. Just one crumb can mess you up for a really long time & it’s not worth it. The better days will become more frequent and the bad days less and less. GDude also suggested dairy free- I was still sick when first diagnosed and did the dairy free for 6 months. The lactose free stuff made me sick too. There were no shortcuts. However, the damage to my small bowel/intestine is healung… I always feel best when i eat whole. I am getting further and further away from pre-packaged food. Hang in there- Best of luck for some quick healing for you.

    Reply

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