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Recent Activity
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- CJF replied to CJF's topic in Traveling with Celiac Disease4European travel with Celiac Disease
Safely home from my recent trip to the UK. I had zero gut issues while traveling around this pretty country. Our tour leader was very good at making sure the 2 of us with gluten issues on our tour were well taken care of. We often got our meals before the rest of the group and adaptations to the menu for us were well thought out and very tasty... -
- Oldturdle replied to CeliacPI's topic in Related Issues & Disorders7Lymphocytic Colitis with Celiac
I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago. This past spring, I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy. I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis. I was asked at that time if I was still... -
- Scott Adams replied to maryannlove's topic in Gluten-Free Foods, Products, Shopping & Medications1Yasso frozen yogurt bars - be careful
Thanks for sharing this! Talk about frustrating! It is complicated enough to try to keep track of which products are safe, but the concept of the same product sold at 2 different stores--one that is certified gluten-free and one that isn't--that is exactly why having celiac disease is still so difficult, and it is so easy to make mistakes! -
- Scott Adams replied to cristiana's topic in Traveling with Celiac Disease1
UK Visitors: Award Winning Flapjackery in the West Country (and Chichester, West Sussex)
It's great that this business has celiac disease awareness and uses gluten-free oats! I wish more restaurants would make such simple changes, for example if Asian restaurants switched to using gluten-free soy sauce, many (but not all!) risks would be eliminated for lots of their dishes. My daughter works at a Vietnamese restaurant where the owner is keenly... -
- Scott Adams replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1
Frustrated
It sounds like you’ve been doing everything right—strictly avoiding gluten, managing food allergies, and advocating for yourself—yet you’re still dealing with severe pain, exhaustion, and other debilitating symptoms. The fact that your colonoscopy came back clear after 31 years gluten-free is a testament to your diligence, but it doesn’t erase the very real...
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I am 73 years old and was diagnosed with Celiac disease, and started the gluten free diet 4 years ago. This past spring, I experienced sudden onset diarrhea, which was persistent for several weeks, before I had a colonoscopy. I was told my colon looked normal, but the biopsy showed microscopic lymphocytic colitis. I was asked at that time if I was still experiencing the diarrhea, and when I said yes, I was prescribed an 8 week course of Budesonide, which included the weaning off phase. Budesonide is a steroid, but it is allegedly specific for the bowel, and has very few systemic side effects. I must say, I experienced no side effects, except a couple little spots of persistent psoriasis went away. I have one week of treatment left, and other than one loose stool very early in treatment, I have had no further bowel issues. I was told that 80 percent of people go into an extensive, or even permanent, remission after taking Budesonide. During the colonoscopy, two polyps were removed, and one was precancerous. I know that colon cancer risks are higher in people with Celiac disease, so it was recommended that I have another coloscopy in five years. Like your husband, I probably had untreated Celiac disease for years. It makes one wonder if the chronic irritation and inflammation could lead to the development of microscopic lymphocytic colitis. This disease is usually diagnosed in people over 50 years old, and occurs approximately in one out of every 1,000 people. Incidentally, If your husband is prescribed Budesonide, it can be purchased significantly cheaper by using GoodRX. -
By Scott Adams · Posted
Thanks for sharing this! Talk about frustrating! It is complicated enough to try to keep track of which products are safe, but the concept of the same product sold at 2 different stores--one that is certified gluten-free and one that isn't--that is exactly why having celiac disease is still so difficult, and it is so easy to make mistakes! -
By Scott Adams · Posted
It's great that this business has celiac disease awareness and uses gluten-free oats! I wish more restaurants would make such simple changes, for example if Asian restaurants switched to using gluten-free soy sauce, many (but not all!) risks would be eliminated for lots of their dishes. My daughter works at a Vietnamese restaurant where the owner is keenly aware of celiacs, and he has made the switch to gluten-free soy and fish sauces. -
By Scott Adams · Posted
It sounds like you’ve been doing everything right—strictly avoiding gluten, managing food allergies, and advocating for yourself—yet you’re still dealing with severe pain, exhaustion, and other debilitating symptoms. The fact that your colonoscopy came back clear after 31 years gluten-free is a testament to your diligence, but it doesn’t erase the very real struggles you’re facing daily. It’s concerning that previous doctors dismissed your celiac diagnosis, and now you’re left fighting for validation while dealing with unexplained symptoms like eye pressure, skin issues, and relentless pain. Menopause and long COVID may be complicating things further, making it even harder to pinpoint the root cause. Are you sure your diet is 100% gluten-free? Do you eat in restaurants...if so, this can be a source of contamination. Trace amounts of gluten over time could explain your symptoms. Many people with celiac disease have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
Could you be having acid reflux? I used to get it soooo bad before I was diagnosed, now very rarely. I didnt have stomach upset, aka silent reflux, but pain in chest (thought I was having a heart attack) and food would get stuck from the esophagus irritation. The things here really helped, especially raising head of bed, sip of apple cider vinegar before meals with protein, heel thumping, and until it healed, taking DGL after meals to coat...do NOT take antacids https://drjockers.com/acid-reflux/ DGL https://www.amazon.com/Integrative-Therapeutics-Rhizinate-Deglycyrrhizinated-Licorice/dp/B001WUC406/
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