Daily Digest

Category: Dude Mailbag

  • Dude…how do I support my best friend who was just diagnosed with celiac disease?

    Dude…how do I support my best friend who was just diagnosed with celiac disease?

    I have had celiac disease for (…counting fingers and toes…) over 17 years and the support I have received from family, friends, and of course this community has been incredible. And for that I am grateful. But after I received the following email, I realized that in that 14 years, none of MY friends or family have been diagnosed with celiac disease. And for that I am insanely jealous also grateful. Anyway, here is the email:

    Hi there. I stumbled upon your blog today while researching how to support my best friend who was just diagnosed with celiac after a pretty acute Gastro couple months and finally gave in went to the doc did the blood work and got the news this week. What support does he need from a friend?

    Now THAT is a good friend! We need more people like her in this world. My main piece of advice would just be to “be there” for him. Like any disease, getting diagnosed can be a shock to the system. And getting diagnosed with celiac, because of the overwhelming life change that must take place, can be really intense. Listen to his fears and concerns and help him off the ledge, so to speak. Like I said, it’s an overwhelming diagnosis. But it can be managed and it does get easier as time goes by. Here are some other quick tips:

    Be patient. It’s a whole new world where gluten is now his enemy. He’ll need time to mourn the loss of his old life. And time to learn all he needs to know about his new life. Don’t expect him to waltz into his gluten free world without some bumps in the road.

    Be strict. I remember the first few weeks after my diagnosis telling Mrs. Dude that I can’t make any promises that I won’t cheat. Well, she gave me the death stare and got her point across quite clearly. And I have never cheated…not even once. I’m not saying it has to fall on you to make sure your friend doesn’t cheat, but don’t make it easy either. Never give your approval. Never encourage him to just “take a bite” of your pizza. And if you’ve got a death stare, now is the right time to bring it out.

    Be educated. As your friend is trying to digest the celiac diagnosis, it may be too much for him to learn all he needs to know. Read, read and read some more about celiac disease and gluten. There is a wealth of information out there. Know as much as you can possibly know. Knowledge is power.

    Be there. He will need you now more than ever.

    What about you folks? What advice would you offer?

  • Dear Dude: How do I convince my son to take his celiac disease seriously?

    Dear Dude: How do I convince my son to take his celiac disease seriously?

    I had an interesting relationship with my dad. He was my little league coach. He was my golfing partner. He called me his little buddy. He was all around just a great, great guy. I was the fourth out of 4 boys and as I look back, by the time my parents got to me (pleading for a girl I’m sure), I feel they checked out of the “parenting” department a bit.

    As I got older (I was going to say ‘as I matured’, but who am I kidding?), I realized he had his demons, just as we all do, and he did his absolute best with what he had. Sadly those demons took him away from us when he was only 68.

    So cheers to my dad and all the dads out there who are simply doing their best!

    Which leads me to an email I received yesterday from a father whose son has had celiac disease since a young age and is now in his 20’s but refuses to take his celiac disease seriously and is paying the price for it. He is asking me for advice. And I am asking you to share yours as well. Here is his email:

    Dear Gluten Dude,

    I am a father of a 25 year old son who has had a celiac disease diagnosis since he was six. From puberty onwards he has more or less neglected his gluten-free diet and has had problems ever since with his education, having had mental problems like depressed feelings, anxiety, concentration problems and probably brain fog, of which I thought that at least there was a (big) chance that they (and so his complete life) could be positively influenced by him accepting his celiac disease and sticking to a gluten free diet.

    In the continuing process of wanting to help him, I have given him your book some years ago because I think it has the exact right tone for people like him and so it might convince him. He didn’t read it though, which I regret very much.

    He is not easy in discussions but in the latest serious discussion, he used the argument of getting more abdominal problems while sticking to a diet (he has tried it for some months a couple of years ago) and therefore the strange idea that he might not have celiac disease. I have to say here that at 6 he had both positive serology and a complete villous atrophy. So of course I have try to convince him that it is just a fact. He has celiac disease and it is not going away.

    As parents we are quite desperate and even his friends see him in a position now where he makes life very hard for himself and they start to worry about his situation living on its own after a relationship breakup.

    It is hard to help someone who sort of refuses it and denies his situation.

    Do you have any advice which could make a breakthrough?

    There’s an old proverb that says “You can lead a horse to water but you can’t make him drink.” In human terms, this means you’ve presented all of the facts to him, but now it’s in his hands whether he wants to take action to save himself.

    I cannot imagine what his body is going through: physically and mentally. Celiac affects all parts of the body and the more he eats gluten and the more damage is done to his intestines, his condition will only worsen. I cannot fully explain why he had stomach discomfort while eating gluten-free. It could be his body adapting. It could be that he wasn’t really eating 100% gluten-free.

    But it will take more than a few months eating GF for him to begin to heal. It took me years and it was only when I really changed my way of eating did I begin the healing process.

    You are seriously a good man and your son is lucky. If he keeps eating gluten though, his luck may run out.

    If anyone out there in celiac land has some input/advice, please share. Thank you.

    Dude Note: If you’ve never heard the song Father and Son by Cat Stevens, give it a listen. I used to listen to this song over and over again when I was a kid. For some reason, it just struck a chord with me. And it still does.

  • Dear Dude: I don’t have celiac disease anymore

    Dear Dude: I don’t have celiac disease anymore

    Soooooooooooooooooooo, I was diagnosed with celiac in late October 2016. I spent the next 6 months receiving treatment from a naturopath. I went and had my colonoscopy/endoscopy and the internist didn’t think I had celiac. But I continued to do as I was instructed and did a complete cleanse then started adding foods to see what was causing the symptoms of a histamine disorder. Doing well. Then I check in with my GP and he tested me again to later tell me that I don’t have celiac and all my labs came back great! Wow, so happy to hear that! I was so exasperated in spending $$$$$ on supplements, spending hours in the grocery store reading every label, the Drs visits buying every book on celiac & autoimmune diseases that when the GP said I didn’t have celiac I went back to my old way of eating. Not as bad, but glutened. Now it’s been 10 months and I’m right back to where I was in October of 2016.

    So I guess my question is HOW do I stress to my husband’s family to stop trying to feed us. It’s annoying to me when I repeat myself over & over to them please don’t include us in meals for awhile until we get this figured out. These people are obsessed with food. They have to eat 3 meals a day and snack throughout the day. They’re all over weight but seem to be concerned that because I can’t keep weight on I’m failing my husband because I’m not taking care of myself. Side note, we’re 60, he just had a heart attack. His lifestyle has to change as well. I thought (even though it’s awful to have a heart attack to get your head out of your ass) we could finally do this whole new lifestyle change together. Apparently not.

    [Scratching my head trying to figure this one out. Have now drawn blood from my scalp so will stop scratching and start typing.]

    If I am reading this correctly, you were diagnosed with celiac disease. And then went to a naturopath for treatment. Then got retested and was told you do not have celiac disease. So you started eating gluten again and now feel like doo doo. Now you’d like your husband’s family to stop feeding you. Did I get that right?

    First…sorry about hour hubby. Hope he is on the mend. Second…once a celiac, always a celiac. You cannot get rid of the disease. Three…while I am all for natural treatment over medication when possible, the only treatment for celiac disease is a gluten-free diet, so I’m not sure what the naturopath was trying to offer/sell to you. Fourth…I won’t comment on the issue of your husband’s family feeding you. I will just assume there’s more to the story than I’m getting out of it. Can you not feed yourselves? I just don’t get it.

  • Is a second celiac test necessary?

    Is a second celiac test necessary?

    Two years after my initial celiac diagnosis, I was still feeling like poop. My gastro ran a few extra tests and found nothing else wrong. Then he decided to re-scope me. Not to confirm that I actually had celiac disease. I did. But to see how my intestines were healing.

    But what if you go to a new doc and he insists on re-testing you for celiac disease because he doubts the first tests were accurate.

    We’ve all sadly had our share of doctor horror stories. Here’s another one to add to the list from a fellow celiac.

    Hi Gluten Dude. I needed to share a recent doctor visit with you.

    I am still having issues after being diagnosed with celiac disease two years ago and going gluten free. I know that it can take longer to get better and decided to see another gastroenterologist for a second opinion. I left the Doctors office with my head spinning. I brought all of my blood test results for the last year so he could see all my levels. He walked in the room and asked why I was there.

    [Dude note: This drives me batty. In what other industry is this accepted? Can you imagine walking into a client’s office without first knowing why you are there?]

    I told him because of my celiac and he said that my antibodies were perfect so I must be gluten free. I said yes and was ready to talk about everything. He never asked me my history or how I was currently feeling. The first thing he decided to do was another scope. I tried to show him the pictures of my first scope showing the damage to my intestines but he didn’t want to see it. I told him the the biopsies showed celiac and I had a genetic test that showed I have the gene. He told me he wanted to redo the gene test since I had it done two years ago. ???? I know that your genes don’t change. The tests costs $650 and he asked if I would pay for it. My insurance paid for it the first time.

    I didn’t have a copy of the gene results and he wanted to see it. The office contacted my doctor and they sent a copy. He called me in his office and said that I only had a 2 for the gene and only had a moderate chance of developing the disease. He only sees people with a 7 or 8 (high chance of developing celiac). Since I had biopsies come back positive then I probably had celiac. ????

    He then told me to “gluten up” for a week before my scope so they could send the samples to a different lab. I told him that gluten makes me sick. He told me to think about it. ????????

    I left there and contacted a celiac dietitian that I see and she was floored by what he said and how he acted. He made me feel like it was all in my head. I went through years of being sick and told it was all in my head. I was relieved when I was diagnosed because I could finally let everyone know I wasn’t making it up.

    The next day I called the office and cancelled everything and told them I won’t be back. They asked why and I told them at I won’t make myself sick for him and damage my intestines so he could be convinced. My husband called our insurance company to make sure they didn’t approve anything from his office and filed a complaint. The person that he talked to has a daughter with celiac and she couldn’t believe it.

    In a way I am glad that I saw Dr. Nightmare because I will never let a doctor convince me it is all in my head.

    Thanks for listening.

    “It’s all in your head” is a phrase I have heard over and over again from my fellow celiacs. Makes me sad.

    Look…there are tons of great docs out there. But there are also those with the god complex; who make you feel like they’re doing you a favor by seeing them; and “how dare you question my decisions?”

    When I was a lad and dealt with a bit of acne (good times), I had a dermatologist who insisted on doing an injection in each pimple to get rid of them (at $10/injection). I said that I didn’t care about the ones I already had, I want to prevent future ones. He said he would no longer treat me then. Nice.

    So if a doc wants to do a second endoscopy to see how you are healing, and you trust his/her instincts, I’m down with that. But when he’s convinced you may not have celiac, even though you’ve already been diagnosed, and he starts suggesting more test, you may want to que$tion where his motivation$ lie.