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Recent Activity
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- Jenny (AZ via TX) replied to Jenny (AZ via TX)'s topic in Gluten-Free Foods, Products, Shopping & Medications2gluten-free stool softener needed for after surgery
Thanks for the reply. I’ll call Colace to be sure. I was just wondering if anyone had already gone through this:) I have not seen any gluten-free labeling on the package but I know that doesn’t mean it’s not gluten-free. The labeling is more of a comfort thing for me. Do you think I need to worry about cross contamination if they say no gluten ingredients? I’m... -
- QueenBorg replied to QueenBorg's topic in Gluten-Free Foods, Products, Shopping & Medications2New to gluten-free
Thanks for the information. I will definitely be doing a lot more investigating in the future! -
- Scott Adams replied to Rebeccaj's topic in Coping with Celiac Disease1symptomatic ?
Living or working in environments where gluten exposure is a constant risk can be incredibly challenging, especially when neurological symptoms are involved. For those with celiac disease or severe gluten-related disorders, airborne gluten (like flour dust in kitchens or shared workspaces) can trigger indirect exposure through inhalation or cross-contact... -
- Scott Adams replied to Grahamsnaturalworld's topic in Related Issues & Disorders2
Refractory celiac disease
It’s incredibly frustrating when specialists don’t grasp the urgency of worsening symptoms, especially when neurological involvement is at play. For refractory celiac disease (RCD) diagnosis in Adelaide, your best bet is to seek out a gastroenterologist with specific expertise in complex celiac cases. Consider reaching out to: The Royal Adelaide Hos... -
- Scott Adams replied to Hummer01's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms11
Diagnosis confusion
Your blood test was not negative (TTG-IgA result - 4 where <4 negative), but looks borderline if above 4 is positive or weak positive, but you can still have celiac disease with negative blood test results, although it's not very common: Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response...
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Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct? -
By Jenny (AZ via TX) · Posted
Thanks for the reply. I’ll call Colace to be sure. I was just wondering if anyone had already gone through this:) I have not seen any gluten-free labeling on the package but I know that doesn’t mean it’s not gluten-free. The labeling is more of a comfort thing for me. Do you think I need to worry about cross contamination if they say no gluten ingredients? I’m so strict with being gluten-free but realize many manufacturers may have cya statements and the products are safe Will look into Phillips as well. The surgeon recommended Colace and to add MiraLAX if needed so I actually need to get both as he says one of the worst things is to get constipated post surgery. -
Thanks for the information. I will definitely be doing a lot more investigating in the future!
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By Scott Adams · Posted
Living or working in environments where gluten exposure is a constant risk can be incredibly challenging, especially when neurological symptoms are involved. For those with celiac disease or severe gluten-related disorders, airborne gluten (like flour dust in kitchens or shared workspaces) can trigger indirect exposure through inhalation or cross-contact, though true celiac reactions typically require ingestion. However, non-celiac gluten sensitivity (NCGS) or wheat allergy can sometimes cause airborne-triggered respiratory or neurological symptoms (e.g., headaches, brain fog, or even seizure-like episodes in rare cases). Your focal seizure could stem from chronic inflammation, vagus nerve irritation, or neuroglial activation if accidental ingestion occurred—but it’s also worth exploring PTSD-related responses if anxiety around exposure is severe. Many with celiac report delayed neurological symptoms (hours to days later), making it hard to pinpoint triggers. Since your family isn’t gluten-free, shared kitchens may pose risks (e.g., crumbs, toaster use, or cookware residue). Suggestions: Workplace Safety: If airborne flour was a factor, request accommodations (e.g., ventilation, PPE) under disability protections—though proving causality is tough. Medical Follow-Up: Push for neurological testing (EEG, MRI) to rule out other causes, and consider a gluten-free household trial to see if symptoms improve. It’s unfair you were let go without clearer answers. Keep documenting symptoms and exposures. -
By Scott Adams · Posted
It’s incredibly frustrating when specialists don’t grasp the urgency of worsening symptoms, especially when neurological involvement is at play. For refractory celiac disease (RCD) diagnosis in Adelaide, your best bet is to seek out a gastroenterologist with specific expertise in complex celiac cases. Consider reaching out to: The Royal Adelaide Hospital’s Gastroenterology Department (ask for clinicians affiliated with celiac research or autoimmune disorders). A university teaching hospital (e.g., specialists at the University of Adelaide’s medical network often handle refractory cases). Celiac Australia’s clinician directory (they may have vetted specialists familiar with RCD). Since your symptoms are escalating, emphasize the neurological progression (e.g., neuropathy, ataxia) when booking appointments—this often flags urgency. You might also request repeat biopsies, TTG-IgA testing, and HLA-DQ2/DQ8 gene testing to rule out complications like RCD Type 2 or overlap conditions (e.g., gluten ataxia). If local options fall short, telehealth consults with celiac-focused centers in Melbourne or Sydney (e.g., The Alfred, RPAH) could provide second opinions. Keep advocating for yourself—you deserve answers. We also have a ton of articles on refractory celiac disease here: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/
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