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Coping with Celiac Disease
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Recent Activity
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- Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications2Malt vinegar
Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction becau... -
- Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease55
Supplements for those Diagnosed with Celiac Disease
A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination wit... -
- Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders2
Celiac Disease, Lymphocytic colitis and Bowel rupture
I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 m... -
- KelleyJo replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications2Malt vinegar
Yes, I've reacted to malt anything . . . it does come from barley. I'm super careful to avoid anything containing malt or even maltodextrin unless it's labeled from corn. -
- HelenH posted a topic in Gluten-Free Foods, Products, Shopping & Medications2Malt vinegar
Having avoided gluten well for many years I think I may have had a salad with Malt Vinegar and it was one of the worst 'attacks' I have experienced. I just want to know if anyone else has been so badly affected by malt vinegar.
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Posts
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By Scott Adams · Posted
Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used. -
By Scott Adams · Posted
A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach. -
By Scott Adams · Posted
I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences. -
Yes, I've reacted to malt anything . . . it does come from barley. I'm super careful to avoid anything containing malt or even maltodextrin unless it's labeled from corn.
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Having avoided gluten well for many years I think I may have had a salad with Malt Vinegar and it was one of the worst 'attacks' I have experienced. I just want to know if anyone else has been so badly affected by malt vinegar.
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