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- Scott Adams replied to Misha45's topic in Coping with Celiac Disease1Illinois Groups
There are several Chicagoland and western suburb groups that offer support for those with celiac disease and gluten-related conditions. Here are a few options to explore: Gluten Intolerance Group (GIG) Chicago – They host meetups, restaurant outings, and educational events. Check their Facebook page or website for local chapters. Celiac Disease F... -
- Scott Adams replied to Beagirl's topic in Coping with Celiac Disease3
New to this diagnosis
I hear you—it’s completely understandable to feel frustrated and overwhelmed, especially when you’re already managing so much. A new diagnosis, even if it’s "manageable," can still feel like one more burden on an already heavy load. It’s okay to complain, grieve, or just vent about it! Adjusting to dietary changes, reading labels, and finding safe restauran... -
- Scott Adams replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms23
Not sure if this is Celiac or just a gluten-free intolerance
Welcome, and I’m sorry to hear you’re dealing with so many health challenges at once. Given your conditions—especially the nutrient deficiencies (like iron, B12, sodium, and potassium), fibromyalgia, and GI-related issues—it might be worth exploring whether celiac disease or another gluten-related disorder (like non-celiac gluten sensitivity) could be cont... -
- xxnonamexx replied to xxnonamexx's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10What would a diagnosis tell me?
Thanks for the well thought out answer. I was wondering if I needed to take multi vitamins as I'm on elimination diet for the summer until I delve into blood test. It appears 8 weeks before would be 2 months before my blood test. I will see when I schedule. I agree my final gluten farewell I don't want to over indulge either during as I have to work and didn... -
- Scott Adams replied to JessikaSwallow78's topic in Related Issues & Disorders4
New to Celiac
Please see this category for articles on related conditions: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/
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By Scott Adams · Posted
Your daughter's situation presents a complex but not uncommon scenario in celiac disease diagnosis. While she carries the celiac gene and shows elevated tTG-IgG levels (consistently hovering between 10-17), the negative biopsy and fluctuating deamidated gliadin antibodies create diagnostic uncertainty. The IgA deficiency complicates interpretation, as it requires reliance on IgG-based tests which can be less specific. The persistently (but mildly) elevated tTG-IgG could indicate several possibilities: early-stage celiac disease before visible intestinal damage occurs, potential cross-reactivity from another autoimmune condition, or what's sometimes called "potential celiac disease" where antibodies are present without villous atrophy. The stability of her numbers (never exceeding 17) suggests her immune system is reacting to gluten but perhaps not mounting the full-blown attack seen in classic celiac. Given her genetic risk and possible other autoimmune disease, many experts would recommend either a trial of strict gluten-free diet to monitor symptom and antibody response, or close monitoring with repeat testing. A consultation with a pediatric celiac specialist or immunologist could help navigate these ambiguous results, as they're more familiar with these borderline cases and can weigh all factors - including her other potential autoimmune issues - in providing the most accurate assessment and management plan. -
By Scott Adams · Posted
It sounds like you're dealing with a really confusing and frustrating situation. Even though your biopsy didn't show damage, your positive TTG-IgA antibodies that respond to a gluten-free diet strongly suggest your body is reacting to gluten in a significant way. This could indicate potential celiac disease that just hasn't caused visible intestinal damage yet, or possibly non-celiac gluten sensitivity (NCGS), which doesn't show up on biopsies but can cause similar symptoms. Your terrible reaction to the gluten challenge - the weight gain, bloating, swelling and pain - is your body sending clear signals that gluten is problematic for you, regardless of what the biopsy showed. It might be worth getting a second opinion from a different gastroenterologist or celiac specialist, as some doctors recognize that antibody tests and symptom response can be just as meaningful as biopsy results. Genetic testing could also provide more clues. I understand how frustrating it must be to not have that definitive diagnosis, especially when your family isn't being supportive. But your experience is valid - if removing gluten helps you feel better, that's what matters most. Many people in the celiac/gluten-sensitive community have similar stories of unclear test results but clear bodily reactions. You know your body best, and it's okay to trust those signals even without a textbook diagnosis. -
By Scott Adams · Posted
There are several Chicagoland and western suburb groups that offer support for those with celiac disease and gluten-related conditions. Here are a few options to explore: Gluten Intolerance Group (GIG) Chicago – They host meetups, restaurant outings, and educational events. Check their Facebook page or website for local chapters. Celiac Disease Foundation (CDF) Chicago Support Group – Offers in-person and virtual meetings with guest speakers and shared resources. Meetup.com – Search for "Chicago Celiac" or "Gluten-Free Support" groups; some suburban groups organize dining events and grocery store tours. Rush University Celiac Disease Center – Occasionally hosts support groups and educational seminars (check their events page). Local Hospitals & Clinics – Many (like Northwestern Medicine or Edward-Elmhurst Health) have nutrition-focused support groups—call to ask about celiac-specific meetings. You’re not alone—Chicago’s GF community is active and welcoming. -
By Scott Adams · Posted
I hear you—it’s completely understandable to feel frustrated and overwhelmed, especially when you’re already managing so much. A new diagnosis, even if it’s "manageable," can still feel like one more burden on an already heavy load. It’s okay to complain, grieve, or just vent about it! Adjusting to dietary changes, reading labels, and finding safe restaurants takes effort, and it’s normal to mourn the simplicity of life before restrictions. What’s encouraging is your resilience—you’re already thinking ahead about cooking gluten-free, finding alternatives, and taking control where you can. That’s huge! But it’s also valid to feel upset that this is something else to juggle. Chronic conditions can feel unfair, especially when they pile up. If it helps, many in the gluten-free community share that initial frustration but eventually find a rhythm (and even discover new favorite foods!). Give yourself grace—it’s okay to feel both determined and annoyed. If support would help, consider connecting with a celiac support group (online or local) where others truly "get it." You’re doing great by adapting, but your feelings are just as important as the practical steps. Wishing you moments of ease—and maybe a fantastic gluten-free treat to sweeten the journey. -
By Scott Adams · Posted
Welcome, and I’m sorry to hear you’re dealing with so many health challenges at once. Given your conditions—especially the nutrient deficiencies (like iron, B12, sodium, and potassium), fibromyalgia, and GI-related issues—it might be worth exploring whether celiac disease or another gluten-related disorder (like non-celiac gluten sensitivity) could be contributing. Celiac disease often causes malabsorption, leading to deficiencies, anemia, and even neurological symptoms (like those seen with B12 or electrolyte imbalances). Your hypertension, hyponatremia (SIADH), and Raynaud’s could also have autoimmune ties, so checking for underlying causes is important. A good next step would be to see a gastroenterologist for celiac testing (blood tests like tTG-IgA and an endoscopy if needed) and a rheumatologist to rule out other autoimmune conditions. A dietitian familiar with gluten-free diets and nutrient deficiencies could also help manage dietary changes if needed. Keep advocating for yourself—it’s a lot to navigate, but connecting the dots with the right specialists can make a big difference. Wishing you answers and relief soon! (Note: Always consult your doctor before making changes, especially with complex conditions like SIADH or hydrocephalus.) Be sure to check out articles here: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/
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