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- Scott Adams replied to Dora77's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease3Energy drink can has stains - potential gluten?
While your vigilance is completely understandable, the risk of gluten exposure from those can stains is extremely low. Here’s why: First, gluten proteins can’t penetrate metal cans—any residue would only be on the surface. Second, the amount of potential gluten in a few dried droplets (even if it was a wheat-based drink) would likely be minuscule after dryin... -
- Scott Adams replied to AdelaW's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1
Typical Diagnosis Route
Your situation highlights a frustrating gray area in celiac diagnosis. While your weak positive tTG-IgG (6) initially seemed borderline, your biopsy results tell a different story—moderate villous blunting, crypt hyperplasia, and intraepithelial lymphocytes are classic Marsh Stage 3a changes that strongly indicate celiac disease, especially combined with y... -
- Scott Adams replied to Jsingh's topic in Related Issues & Disorders1
Histamine intolerance and supplements
Your observations about fermented foods, high-histamine foods (like avocado and tomatoes), and neurological reactions strongly suggest histamine intolerance (HIT), even if it's challenging to get medical confirmation. Since many allergists don't yet recognize HIT as a standard diagnosis, you might have better luck with a functional medicine doctor or naturopath... -
- Scott Adams replied to jamiet06's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Duodenum biopsy result confusion
Your biopsy findings—specifically the intra-epithelial lymphocytosis with normal villi—are what we call "Marsh Stage 1" changes, which can indeed suggest early or potential celiac disease, especially given your ongoing digestive symptoms (bloating, diarrhea). While these changes aren’t definitive for celiac on their own (they can also occur with H. pylor... -
- Scott Adams replied to CJF's topic in Traveling with Celiac Disease1
European travel with Celiac Disease
Traveling to the UK with celiac disease is actually one of the easier European destinations thanks to strong allergen labeling laws and widespread awareness. Since Road Scholar is already aware of your dietary needs, take these extra steps for peace of mind: First, pack gluten-free translation cards (even though English is spoken, these clearly explain cross...
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By Scott Adams · Posted
While your vigilance is completely understandable, the risk of gluten exposure from those can stains is extremely low. Here’s why: First, gluten proteins can’t penetrate metal cans—any residue would only be on the surface. Second, the amount of potential gluten in a few dried droplets (even if it was a wheat-based drink) would likely be minuscule after drying and exposure to air. For context, research shows most celiacs react to >10mg of gluten daily, and those stains would contain far less—if any gluten at all. That said, if it helps your peace of mind, you can: 1) Wipe the rim with a clean wet cloth before opening, 2) Use a straw to avoid mouth contact with the rim, or 3) Opt for bottled drinks when uncertain. Most celiacs I know (including myself) don’t stress over can stains unless there’s obvious food residue (like dried pasta sauce). The particles you saw were likely dust or manufacturing residue—energy drink facilities rarely handle gluten near filling lines. While it’s great to be cautious, this is one scenario where I’d say you can safely -
By Scott Adams · Posted
Your situation highlights a frustrating gray area in celiac diagnosis. While your weak positive tTG-IgG (6) initially seemed borderline, your biopsy results tell a different story—moderate villous blunting, crypt hyperplasia, and intraepithelial lymphocytes are classic Marsh Stage 3a changes that strongly indicate celiac disease, especially combined with your symptom resolution on a gluten-free diet. The fact your doctor is insisting on retesting while gluten-consuming is technically correct per current guidelines (which require serology+biopsy concordance), but seems overly rigid given your clear biopsy evidence and clinical response. Here are your options: 1) If you want absolute certainty (e.g., for family screening purposes or insurance coverage), you could do a 2-4 week gluten challenge (1-2 slices of bread daily) and retest bloodwork—but this means enduring symptoms again. 2) Many gastroenterologists would diagnose celiac based on your biopsy alone given the moderate damage and your improvement gluten-free, especially with IgA deficiency complicating serology. Consider seeking a second opinion from a celiac specialist who may prioritize histology over borderline bloodwork. 3) If you opt not to reintroduce gluten, your diagnosis may be labeled "probable celiac" in records, but you can still receive follow-up care and dietary guidance. Ultimately, your biopsy shows real damage that gluten caused—whether the numbers hit arbitrary lab cutoffs matters less than your health response. -
By Scott Adams · Posted
Your observations about fermented foods, high-histamine foods (like avocado and tomatoes), and neurological reactions strongly suggest histamine intolerance (HIT), even if it's challenging to get medical confirmation. Since many allergists don't yet recognize HIT as a standard diagnosis, you might have better luck with a functional medicine doctor or naturopath familiar with mast cell disorders—they often order DAO enzyme blood tests or genetic testing for HNMT/DAO mutations. Regarding nutritional connections, several deficiencies can worsen HIT: Low vitamin B6 (needed for DAO production), copper (a DAO cofactor), vitamin C (helps break down histamine), and magnesium (stabilizes mast cells) are common culprits. Many people report improvement after supplementing with these, along with DAO enzyme supplements (like Umbrellux DAO) taken before meals. Quercetin, luteolin, and omega-3s may also help stabilize mast cells over time. Since your daughter reacts to probiotics, avoid histamine-producing strains (e.g., Lactobacillus casei) and opt for low-histamine options (like Bifidobacterium infantis). A low-histamine diet for 4-6 weeks, paired with targeted supplements, often reveals if this is the root issue—just keep a symptom journal to track progress! -
By Scott Adams · Posted
Your biopsy findings—specifically the intra-epithelial lymphocytosis with normal villi—are what we call "Marsh Stage 1" changes, which can indeed suggest early or potential celiac disease, especially given your ongoing digestive symptoms (bloating, diarrhea). While these changes aren’t definitive for celiac on their own (they can also occur with H. pylori, NSAID use, or even IBS), they absolutely warrant further investigation given your symptoms. Here’s what I’d recommend: First, ask your GP or gastroenterologist to run the full celiac blood panel (tTG-IgA, EMA, and total IgA to rule out deficiency) if you haven’t had them recently—these results, combined with your biopsy findings, could clarify whether gluten is the trigger. If you’ve been eating gluten consistently before testing, the bloodwork should be reliable; if not, you may need a short gluten challenge. Second, consider testing for H. pylori (via stool antigen or breath test) and reviewing any medications (like NSAIDs) that could contribute to the lymphocytosis. While IBS could explain some symptoms, it doesn’t cause these histological changes. Given your age and chronic issues, it’s worth pushing for answers—untreated celiac can develop at any age, and even mild damage can cause systemic effects. A consult with a gastroenterologist familiar with celiac’s "gray zone" cases would be ideal to connect all the dots. -
By Scott Adams · Posted
Traveling to the UK with celiac disease is actually one of the easier European destinations thanks to strong allergen labeling laws and widespread awareness. Since Road Scholar is already aware of your dietary needs, take these extra steps for peace of mind: First, pack gluten-free translation cards (even though English is spoken, these clearly explain cross-contamination risks to kitchen staff). The UK uses the "Crossed Grain" symbol for certified GF foods, and most supermarkets (like Tesco, Sainsbury’s, and Marks & Spencer) have excellent GF sections—stock up on snacks like GF biscuits or cereal bars for backup. When eating at restaurants, pubs are often surprisingly celiac-friendly (look for places displaying Coeliac UK accreditation), and don’t hesitate to ask about dedicated fryers for fish and chips. For your tour meals, politely double-check with staff at each location—hotel breakfasts can be tricky with shared toasters, so request sealed GF bread or yogurt/fruit alternatives. As for medications, there’s currently no FDA-approved treatment for gluten exposure—some find digestive enzymes (like GliadinX -- they are a sponsor here) help with minor symptoms, but they don’t prevent damage. Pack your usual remedies (peppermint oil for bloating, anti-nausea meds, etc.) and consider bringing a doctor’s note for any prescription medications. The Coeliac UK website has a fantastic restaurant guide and emergency food listings—download their app before you go. Bon voyage, and enjoy your trip with confidence!
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