Compassion: What a Concept

helping celiacs

Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.

Today’s 30 for 30 blog post is for: Everyone looking for compassion. It may not be easy to find, but it’s there.

First things first…today officially kicks off Celiac Awareness Month. Please, please, please do what you can to help raise awareness. I have seen serious strides in the past year but we have a long, long way to go.

Secondly…I’m stressed. How stressed you say? Last night, I had a recurring dream that my teeth were falling out. And then I kept waking up, in my dream, happy that it was just a dream and my teeth would fall out again. This happened ALL NIGHT LONG. I was never so happy to see the break of day today. I spent the first five minutes this morning licking my teeth.

Ok…moving on.

So I’m going through my emails seeing who I should help today. I have about 200 currently in my inbox. As I’m reading them, there is a consistent theme of celiacs not being taken seriously.

There’s an email from someone whose husband thinks she’s making it up to get out of going to parties/dinner with him.

There’s a woman who posted on Facebook asking for gluten-free friendly places in San Diego for an upcoming trip and was presented with a barrage of ignorant remarks (“Find a steak house and don’t eat the bread…geez people.”)

And on and on it went. Damn depressing.

But then I came across one that put a smile on my face and that’s the one I want to share today. Because dang it, we all need to smile more (as long as our teeth haven’t fallen out).

Here it is…

Hey, I have only been diagnosed recently (a couple of months ago) and found your site nearly straight away. I love your rants but what I wanted to share was less of a rant and more of a mega praise session!

I’ve had the standard, “oh you can eat a bit of gluten right/my friend has a bit of that disease/etc” which has been irritating. However, this is what I want to share.

Just prior to diagnosis I had arranged to visit a friend from uni. She got in touch a few weeks before the visit date to say she had been reading up on coeliac disease and had planned a menu for our meals over the weekend – all of them gluten free – and asked me if they were ok, if I wanted anything changed.

I was so touched that she had made the effort, and that she was doing the whole weekend GF for BOTH of us. She also said that she had decided to eat gluten free for the two weeks prior to my stay so that it would all be practiced and second nature. What an AMAZING friend!

I know it’s often super annoying when people just don’t get it, but it’s also so lovely when it feels like they do!

It’s sad when compassion stands out because it’s not the norm, but I’m still so delighted to hear stories like this. It gives me hope, and like I always say, hope is a good thing.

As we continue to raise awareness, let’s hope for more stories just like this one.

Happy Celiac Awareness Month.

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26 thoughts on “Compassion: What a Concept”

  1. GD-

    Love the positive post/rant. Sorry about your teeth. I found this for you. Enjoy!!

    Jersey Girl
    Dream Interpretation of Teeth

    To dream that you have rotting or decaying teeth implies that you may have said something that you shouldn’t have. You may have uttered some false or foul words and those words are coming back to haunt you.

    To dream that your teeth is sparkling or gleaming signifies happiness and fulfilled wishes.

    To dream that you are brushing your teeth refers to your level of confidence, your struggles and your aggressiveness. You need to look out for yourself and your own interest. Perhaps, you feel that your position is shaky.

    To dream that your teeth has fallen out and you try to refit them back into the mouth signifies a lack of self-confidence and embarrassment. You are afraid that others will know of your short-comings. If you acted calmly in your dream, then it may point to how can make the best out of any situation. You are able to rise above unfavorable circumstances.

    1. JG 🙂 just to add:

      And I have read that teeth cracking and falling out means a loss of baby teeth and a growing up of sorts. A time of making adult decisions and making big changes in one’s life.

      (or it just means the Dude needs to stop worrying in his sleep) lol

      Sure beats the “I am half- naked and have to take a chem test I did not study for ” dream…erg.


  2. Whoop. My rant (praise) I’m super excited to see this and to see my friend to look at it so she gets how awesome she is!!! 🙂

    1. Oh Ellie… You have a wonderful friend indeed! 😉

      I can only imagine the fun you’re going to have together!


      “There is nothing on this earth more to be prized than true friendship”.
      –Thomas Aquinas

  3. That’s it! That’s the way to go. Good to see such things happening. I, too, have a friend like that. Just wish she lived closer instead of on the other side of the country. But, may we all find “that” friend.
    And, Dude…. sometimes you have dreams of your teeth falling out because they really do. I have lost two teeth to CD. I have a very dry mouth, and lack of saliva contributes to cracking teeth. And, my teeth are horrible. Unfortunately, I was only dx’d with CD 5 years ago, and then was blessed with a dentist who recognized what was going on. Prior to that I even had a dentist refuse to treat me because he was afraid that my teeth would break if he worked on them. I am working on finding the right dentist again (having recently moved), but I have a wonderful primary physician working with me until I do.
    Another one of those weird side effects of celiac. Grrrrrrrr……
    But, Hurrah for Those Friends!

      1. Right on, Irish! I was actually checked for that (and a host of other things) prior to CD. That was a “Nay-Nay” – either fortunately or unfortunately. Merely got the mimic. 🙂

          1. You said it. The one thing I wish I had known (though I would have still gone ahead with it) was that this beastie can cause peoblems after surgery with over-development of scar tissue. I had a full-joint knee replacement two summers ago. I developed scar tissue very quickly and had to have a closed manipulation. Less than six months after that I had to have another one. Last summer right bevore we moved he wanted to do yet another. I declined. Prior to that I had a corneal abrasion that developed a secondary herpes virus and the scar tissue build up so quickly I almost lost mi sight. Fortunately there was a doctor in the practice who had done a lot of research into immune system disorders and vision, and he saved me. But he keyed me into the problem and said with my knee, as I had already figured out, I vould keep doing the manips and keep doing them, etc. nothing would change. So, one successful knee replacement later, and I have terrible range of motion. But, the pain I had before is gone. Silver linings. 🙂 Stupid disease.

  4. I’m coming up on my one year anniversary of my Celiac diagnosis and this post reminds me how thankful I am for all the support I have from my friends and family…it’s always so sad to read about those who don’t have that in their lives. But that’s where you and this awesome community comes in – the perfect blend of humor, advocacy, knowledge, support and understanding. And even though I feel like strangling everyone in my path right now (day 2 of the Whole30 and I’m having horrible withdrawals), this post put a smile on my face…for now, until I get hungry again.

      1. It’s the withdrawals talking (complaining)…I thought I was eating well before starting this – It’s been an eye opening few days, to say the least. I just went back and counted calories from past 2 days and I was seriously under so I need to adjust – it’s all good 🙂

  5. “Remember, Red, hope is a good thing, maybe the best of things. And no good thing ever dies.” Andy Dufresne

    The Shawshank Redemption is one of my all-time favorite movies for this quote and it’s message. We all need hope. Thanks for the positive posts in the last few days GD. I’ve certainly needed them. 🙂

  6. My son is very active in the boy scout and therefore I am too. I go on lot of outings and campouts with him and his troop. Right after diagnosis it was really hard for me to camp because of the shared camp kitchens we would erect. A few months into this journey a fellow scouter who is vegetarian suggested that we get together, erect our own kitchen at these outings and cook our own food. She told me she would give up dairy and gluten if I would give up meat for the campouts. I happily agreed. She has been my rock and the one reason I look forward to going camping again. We come up with menus that make the other adults and scouts drool! And when we go to training courses and other things we always find gluten free/vegetarian restaurants where we can eat together. Compassion is a pretty amazing thing!

  7. Happy Celiac Awareness Month to GDude and everyone else and Kudos to our compassionate friends!

    It’s amazing how similar our CD stories are – we must all be telling the truth about CD! I’ve only lost one tooth to CD, even though CD was pretty tough on my mouth, as a result of continuing to wake up during my first endoscope. I’d bite down on the mouthpiece and they’d knock me out some more. I told my GI that I didn’t want to wake up with that black tube down my throat and I had never fully lost consciousness during my 3 prior surgeries so give me plenty of juice. Afterwards, my GI said he didn’t know I meant to give me twice as much juice as normal people. I’m Special, what can I say. I’ll get my post for my new replacement tooth installed soon! I’m just a tiny bit toothless at the moment but I’ll flash that smile for you anyway. My favorite is still my second surgery – I asked “What’s burning” while they were cauterizing some blood vessels.

    This will be my only contribution to Celiac Awareness Month so please forgive the length and the personal info but it contains a REALLY IMPORTANT GLUTEN WARNING to make fellow Celiac Suffers aware and I may not have another chance to mention it – please keep in regular contact with your vision specialists!

    The last 2.5 months with The Gluten Dude and his merry band of GF followers have been a great GF trip. Alas, I must now sign off for an unknown period of time. I previously tried to talk myself into not spending too much time here, but I failed to stay away because I learned so much, but now I have no choice. I have not been able to see out of my right eye for 3 days and if not better by Monday then we’ll do surgery on Tuesday. Who knows after that? I must now work with my best eye tied behind my back for some time and reading GD on my phone in spare moments isn’t as helpful as it used to be. After sleeping 8 hrs, I am a little better this morning. I can now describe how blood looks inside your eye when yesterday all I could “see” from my right eye was like sticking your face in a murky green/orange pond and opening your eye. 3 days ago my vision was suddenly like looking through the Hubbell Telescope and all I could see was galaxies and stars and cosmic dust with bright flashes of light. What a trip – who needs illegal drugs, which I only heard about, when you’re as “delusionally optimistic” as me. I only very occasionally used Tito’s for pain management.

    THE IMPORTANT GLUTEN WARNING: I am reporting this info to our GF community for one main reason: PLEASE DON’T CHEAT IF YOU HAVE CELIAC DISEASE AND PLEASE SEE YOUR VISION SPECIALIST REGULARLY. My retina specialist is around my age and, bless his heart, remembered CD from his medical school days. He immediately said that he could not say CD was the only cause of my retina problems but he could definitely say that because of the lack of nutritional absorption, CD most probably substantially contributed to my retina problems at my still “young” age. So there you have it in living color – if you have CD, DON’T CHEAT or you may not have any more HD colorvision!

    I have not cheated even once since I discovered my CD but the damage done by gluten to my body for the many years before I knew about the gluten culprit has been pretty extensive. Since my DH is now pretty well under control after 17 months GF, I look pretty healthy (still old) on the outside now, but I keep falling apart on the inside. One of my buddies said, “Man, you’ll be a completely rebuilt shiny 1960 Chevy Pickup with all new parts by the time you get through this, if you live that long!” It’s still incredible to me that during the last 4 yrs I fell from walking 85 miles in 6 days to where I am today solely because of a protein called gluten.

    FOR OUR OLDER GF COMMUNITY MEMBERS, IF YOU DON’T NEED A FASHION MAKEOVER, PLEASE KEEP IN CONTACT WITH THE VISION SPECIALIST OF YOUR CHOICE. But for my previously unplanned divine appointment with my Dad’s retina specialist on Wednesday, I may not even have right eye vision to tie behind my back – like a heart attack, time is very important in preventing complete retinal detachment and permanent vision loss. The “eye dilation” in your annual Eye Dr visit may be an inconvenience but it can be extremely important and preventive when done properly. I’m getting mixed reviews on my new black eye patch fashion statement – some like the salt & pepper hair with the Pirates of the Caribbean look but some little dogs, small children and women by themselves in elevators may be a bit frightened of me. CD is a brutal disease, but it really has taught me more about good health and the human body than I ever thought I needed to know.

    Please listen to GDude, our now 2 Princess Warriors and each of our other eclectic caring and supportive members of this GF family. I hope to be back in the future, but I must save my “good” eye for work just in case it wants to follow its dominant buddy, so I won’t be enjoying any recreational reading for a while. The CD degree of difficulty is now jacked up. I must be careful because it will be even harder to do what I do if both eyes are tied behind my back and I still can’t see where I’ve been – Hindsight being 20/20 and all. Since our daughter will be home from college for the summer today, maybe I can sweet talk her into reading her old Dad a GDude and family story every now and then. I’m off to let my doctor stick some more ice picks in my eye (at least that’s what it felt like for 7 hrs yesterday). Bless you all and I will miss you in the meantime.
    In honor of GDude, name that movie:
    “Now my friend, the firsta rule of Italian driving, (throwing rear view mirror out of the back of the convertible), what’sa behind me is not important!”

    1. Gumball rally! 1976?

      Oh HAP,
      I feel for you. The longer it takes to get a DX, the more crap that can go wrong. I hear that, brother!

      I had vitreous detachment in both eyes last year and they worried over it progressing to retinal detachment. I got lucky, but I have enough floaters in each eye to drive me mad. But it pales in comparison to what you are going through. 🙁

      I am sending you all kinds of cyber-supportive hugs and best wishes for a full recovery. You take it easy, rest and get well.

      We’ll be here!!

      1. Dear Irish

        Thanks so much! I had to come back one last time to congratulate you for being so smart. Gumball Rally in 1976!

        I know everyone in this GF Family is in good hands with our Princess Warrior and The Gluten Dude!

        It’s an impressive testament to the precious quality of everyone in this community that I feel like I’m leaving my Grandmother and Grandfather’s home for the last time. I do hope I am able to regularly visit again sooner rather than later.


    2. Sue in Alberta

      Hap, you hang in there, buddy. I will miss your regular posts but look forward to “seeing” you soon.
      Best wishes.

  8. Hap, good luck and best wishes.
    Here’s hoping you’ve got some good friends like in today’s post to stand right alongside you.

  9. The dreaming of losing your teeth was funny, but also not. Over the course of the last several years, I have lost all but eight of my teeth and those are so damaged as to be beyond repair. I did have regular dental care up until about five years ago and the dentists could not figure out why the damage was happening so badly so quickly. They attributed it to the methotrexate I was given as part of my chemotherapy for breast cancer in 1999. Now that I have a celiac diagnosis, it all falls together, but it is too late to save my teeth. This further limits my diet, as I can’t handle raw vegetables or large pieces of meat. I work around it, but my food is pretty boring texture wise. The worst damage has been to my self-esteem. I look like I have lost about 100 points of my IQ since I have so few teeth. I live on early social security retirement (thanks to celiac symptoms) and no health care coverage, so there is no option for dentures, etc. Just live with very unsightly broken teeth. When I become eligible for Medicare next year, I still have no recourse, as that no longer covers teeth. I am very slowly recovering from the neuropathy, wasted muscles, joint pain, etc., but the tooth damage is permanent. Just bringing up another of the nastier effects of undiagnosed celiac disease. Nutrient malabsorption leads to many many other things.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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