Dude…how do I find the right celiac support group for me?

celiac support groups
On today’s Dear Gluten Dude podcast, we’re talking about celiac support groups and how to know which ones to trust and which ones to stay away from.

Podcast Transcription

(Dude note: I had some mic issues with this podcast. It still sounds fine but not up to my standards. Will fix for next episode.)

Welcome to Episode 5 of Dear Gluten Dude where I answer emails sent to me from the gluten-free community regarding a whole range of topics. Today we’re talking about celiac support groups and how to know which ones to listen to.

As always, no sponsors here but I do have a mobile created specifically for the celiac community that I promise you will help you live a much better gluten-free life. Check it out at GlutenDude.app. Ok…on to the inbox.

“Hi – my 24-yo daughter was just diagnosed with celiac. I just discovered your website and app and it looks super helpful. Do you know of any support groups specifically for young adults? She is doing a ton of research, but also is grieving, angry, overwhelmed, exhausted, and feeling really lousy. Tonight she told me she also wants to try the low FODMAP diet, and I’m not sure if that will make things harder while she gets used to a GF diet, or if it makes sense to do it right away. I’m rambling, but just wanted to say thanks for all your resources and blunt truths.”


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5 thoughts on “Dude…how do I find the right celiac support group for me?”

  1. Did I hear you nearly bite through your tongue trying not to call out Marilyn specifically?!?! Gigantic high fives all around for being the bigger person 😉

  2. As the (retired) Branch Manager of a support group I founded in 2008, I cannot stress enough the importance of hooking up with one locally, if you can. If not, there are several on line. Meanwhile, do NOT undertake the FODMAP diet alone- it’s supposed to be temporary and done only under a doctor’s supervision for a matter of weeks. Her feelings are quite normal for any newbie. This way of life is not easy- especially at the beginning. Much to give up, much to learn, feelings of anger, grief and isolation very common. Please – together- go to gluten.org/getting started and learn what you need to know about label reading, shopping, kitchen set up and much more. If you live in the midwest or or outwest, you can also use that site (gluten.org) to look for a support group in your area. If you are in the Boston area – check out NCA, National Celiac Assoc. and the many small groups they have in that area scattered throughout MA, and some in the midwest. Two other sites that have excellent information are Beyond Celiac and Celiac.com. Jules Shepherd, well- known and much loved chef and baker- has a lot on her website too. Gluten Dude does on his blog. If she lives at home, you will need to set up your kitchen to be safe for her. If she lives alone, help her set up her own. There is some expense involved- getting rid of wood cutting boards, utensils and bowls; ditching stained and old plastic food containers (glass is better); dented-stained- scratched cookware and replace with stainless steel. Next, check all condiments, spices, and all food stored in pantry (after learning to read labels) and toss anything not appropriate like soy sauce, and replace with gluten free version. Ken’s salad dressings are ok, as is Heinz Ketchup and Hellman’s mayo. Use squeeze bottles where necessary, to avoid “double dipping” with things like butter, jelly, peanut butter. She needs to ask her doctor if she has to give up dairy like most newbies, and if she has to supplement Vit D and B, like the rest of us. Good Luck!

  3. I hate the health police.

    One time I was asking for help finding a low calorie gluten free bread. There are some that exist, like Carbonaut… but the first few responses I got were from people shaming me for wanting to eat bread at all saying things like “If you’re trying to lose weight you don’t need ALL THAT BREAD”. There were other shaming posts saying I was doing the wrong thing eating processed food at all. None of that nonsense was helpful or answered my question.

    I eventually decided to just go with carnivore for weight loss and it’s been working very well, but the low carb bread I found did help me transition onto that. I think it’s horrible how a lot of the forum members try to shame and hurt people who want to find gluten free versions of gluten foods.

    Some people want a gluten free fruit cake for Christmas or some nice cookies once in a while or something. It doesn’t make us the devil but we sure get treated like it.

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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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