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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- Dema replied to Dema's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Eating gluten before blood test
Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅- 1
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- Dema replied to Dema's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4
Eating gluten before blood test
alright thank your help! 🤍 -
- Scott Adams replied to Dema's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Eating gluten before blood test
Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day: -
- Scott Adams replied to NoriTori's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
undiagnosed Celiac symptoms but negative endoscopy and antibody test + family history of gastro problems
Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming...- auto-immune
- dismissals
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- Scott Adams replied to sillyac58's topic in Related Issues & Disorders7
Recurring flu like symptoms after being precribed immune system stimulating drug
While the initial flu-like symptoms are a known side effect of Imiquimod, it is plausible that triggering your immune system in that way could have caused a long-term shift in your autoimmune response, essentially lowering your threshold for a reaction. Your theory is very valid. Given your history, the most logical first step is to eliminate oats entirely...
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Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
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By Scott Adams · Posted
Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day: -
By Scott Adams · Posted
Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion. -
By Scott Adams · Posted
While the initial flu-like symptoms are a known side effect of Imiquimod, it is plausible that triggering your immune system in that way could have caused a long-term shift in your autoimmune response, essentially lowering your threshold for a reaction. Your theory is very valid. Given your history, the most logical first step is to eliminate oats entirely, as even certified gluten-free oats can be a trigger for some celiacs due to a protein called avenin. Treat this as strictly as you would wheat, barley, or rye for at least a few months to see if the recurring episodes subside. It's a tangible variable you can control, and many in the community have found significant relief from persistent symptoms after doing so. I'm sorry the medical professionals you've seen have been dismissive; trusting your own body's signals is so important. I truly hope that cutting out oats brings you the answers and relief you deserve.
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