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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Scott Adams replied to More2Learn's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Celiac Maybe a Possibility?
Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though t... -
- More2Learn posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1Celiac Maybe a Possibility?
Hi, I am new! (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here. I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy... -
- Wheatwacked replied to GardeningForHealth's topic in Gluten-Free Foods, Products, Shopping & Medications6Ground meat absolutely full of gluten?
"grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass organic meat can be fed wheat feed- 1
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- Jenn21 commented on Jefferson Adams's article in Gluten-Free Foods & Beverages31Which Fast Food French Fries are Gluten-Free?
Sonic changed their fries to breaded so their fries are not gluten-free and tots have the risk of cross contamination from a shared fryer. -
- Scott Adams replied to Vozzyv's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Weird Symptoms
Your symptoms would not be typical celiac disease symptoms, but still could be related due to possible nutrient deficiencies. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors...
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0December 11, 2024 12:00 AM
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Posts
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By Scott Adams · Posted
Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. -
By More2Learn · Posted
Hi, I am new! (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here. I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me. However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found. It seems like anything I've ever struggled with has a potential correlation to this disease! I'm in my 40's, now. Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee. I often had issues especially when traveling. For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine. I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections. Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset. A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away! Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better. But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things. So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back! I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome. -
By Wheatwacked · Posted
"grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass organic meat can be fed wheat feed -
By Scott Adams · Posted
Your symptoms would not be typical celiac disease symptoms, but still could be related due to possible nutrient deficiencies. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. -
By Scott Adams · Posted
This is a difficult situation, and one that your employer may not take seriously. It's possible that they don't have a way to accommodate your issues, but I don't know much about your work environment. Obviously moving you to another work area would be ideal, but would or could they do that? If not, you might be stuck having to wear a K95-type mask at work to avoid breathing any particles, but they still could end up on your skin. Another alternative is searching for a new job.
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