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- Scott Adams replied to lehum's topic in Super Sensitive People14.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories
Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms... -
- Scott Adams replied to MegRCxx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Diagnosed celiac for 1-2 months ago and everything makes me bloated.
When you are first diagnosed it is very normal to feel overwhelmed and depressed about the vast dietary changes that a 100% gluten-free diet entails. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need... -
- Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips1
bread
Thanks for sharing this! Bread machines are still the way to go if you want outstanding gluten-free breads. -
- Scott Adams replied to FayeBr's topic in Coping with Celiac Disease2
Major Glutening
What you've described is every celiac's nightmare, and it's very frustrating to be failed by a product that was specifically labeled as safe. It would be great to know which product it was so others here can be warned. Six weeks of inadvertent exposure is a significant insult to your system, and it's no wonder that after two weeks you are still feeling... -
- lmemsm replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease41Supplements for those Diagnosed with Celiac Disease
Thank you for mentioning that. My main reaction to gluten seems to be related to the skin and breaking out. So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium. I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale. Recently, I've been...- 1
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By Scott Adams · Posted
Thank you so much for sharing your story with such honesty and detail. Please know that you are not alone in this struggle, and your experience, while incredibly challenging, is more common than those "gluten-free miracle" stories on social media would have you believe. It's completely understandable to feel isolated, but your diligence in tracking your symptoms, following up with scopes, and working with professionals is truly commendable. It's encouraging that your villi have healed, which proves you are successfully avoiding the large-scale damage of gluten; however, it's clear your immune system remains in a heightened state of alert. Your intense reaction to the quinoa flakes is a classic sign of this hypersensitivity. Given the reputable brand, it's highly unlikely to be gluten cross-contact. It's much more probable that you are reacting to the quinoa itself—perhaps due to a separate intolerance, its saponin content (which can irritate some sensitive guts), or cross-reactivity, where your immune system mistakes similar protein structures for gluten. Your nutritionist's plan for a simplified, grain-free (except rice) baseline is an excellent strategy. The goal is to calm your nervous and immune systems down completely before slowly testing individual foods, like avocado or even quinoa in its whole form, to identify the true triggers. Remember, healing from years of damage takes time, and setbacks are part of the journey. Be kind to yourself; you are doing everything right by continuing to investigate and advocate for your health. Your path to feeling better may be more complex, but it is absolutely valid. -
By Scott Adams · Posted
When you are first diagnosed it is very normal to feel overwhelmed and depressed about the vast dietary changes that a 100% gluten-free diet entails. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. There are a couple of things that can help you feel like you have "regained control," and the two that I recommend are learning to read ingredient labels so that you can shop with confidence, and the other is learning to become a good cook (if you aren't already). If you can master these two, then you have regained control of your diet, and can eat safely and recover. To help this site has extensive recipes and cooking sections: https://www.celiac.com/celiac-disease/gluten-free-recipes/ https://www.celiac.com/celiac-disease/gluten-free-cooking/ The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat. -
By Scott Adams · Posted
Thanks for sharing this! Bread machines are still the way to go if you want outstanding gluten-free breads. -
By Scott Adams · Posted
What you've described is every celiac's nightmare, and it's very frustrating to be failed by a product that was specifically labeled as safe. It would be great to know which product it was so others here can be warned. Six weeks of inadvertent exposure is a significant insult to your system, and it's no wonder that after two weeks you are still feeling the effects. The body, especially the nervous system when dealing with ataxia, needs considerable time to calm the inflammatory response and begin to heal. It's common for a major glutening to take several weeks to even a few months for symptoms to fully resolve, so be patient and gentle with yourself—you are on the right track. The anxiety and panic are also a very real, physiological part of the reaction for many of us, compounding the feeling of helplessness. What you're feeling is not a step back to your pre-diagnosis state; it's a severe but temporary flare. Focus intensely on the basics now: rest, hydration, and simple, whole foods. You have not undone all your progress. Your body remembers how to heal; it just needs time and a safe environment to do so. You are not alone in this. -
Thank you for mentioning that. My main reaction to gluten seems to be related to the skin and breaking out. So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium. I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale. Recently, I've been getting migraine reactions to spinach, possibly from the histamine. I do use Malabar spinach (not related to spinach) but only a leaf or two in foods and I don't think it has a high calcium content. I should check into longevity spinach and Moringa again. Some gardeners in our area grow them.
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