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Lakeshore update - Herald Times Reporter

Scott Adams

By Scott Adams
in Publications & Publicity

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Scott Adams Grand Master
Scott Adams
Posted

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Herald Times Reporter

MANITOWOC — Dr. Nolan Hetz will be the guest speaker at the next Connections celiac support group meeting at 6 pm Sept. 7 in the upstairs conference room ...

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    • trents
      New to gluten-free

      By trents · Posted

      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?
    • Jenny (AZ via TX)
      gluten-free stool softener needed for after surgery

      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. 
    • QueenBorg
      New to gluten-free

      By QueenBorg · Posted

      Thanks for the information. I will definitely be doing a lot more investigating in the future!
    • Scott Adams
      symptomatic ?

      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.
    • Scott Adams
      Refractory celiac disease

      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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