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Help needed not being taken seriously

Digestive Health | Last Active: Jun 4 9:15am | Replies (49)

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@gussie

I have been gluten free for over thirteen years. I do not have Celiac but I have a rare disease that mimics celiac. If I eat gluten I have to spend the day in the toilet. It was really hard when I started eating this way but now there are so many good bakeries and restaurants that cater to gf eating. I will say I am in California where it's not so hard but a few years ago took a family vacation to Cape Cod and all I could find were lobster rolls. Over the years I have learned where the best bread is, the best bagels are and a lot do ship. Bakery goods are the hardest but I know where the best ones are. Some foods are much harder than others. For instance Chinese food is difficult because of all the soy sauce and frying, but Thai and Vietnamese are great because almost all dishes are made with rice instead of wheat.

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Replies to "I have been gluten free for over thirteen years. I do not have Celiac but I..."

Unfortunately, with Celiac if I get exposed I get severe gastroenteritis pain and diarrhea for a couple of weeks. We avoid going out to eat and mainly eat at home. For me, Celiac is not the issue.

I went gluten-free in February after my second relapse while trying to taper off Budesonide (I was diagnosed with Collagenous Colitis last November). It was tough at first and I seriously mourned being unable to eat my homemade sourdough bread, but like you I've found many excellent gluten-free substitutes. We have an excellent small bakery near our house that offers all kinds of gluten-free treats, and I have found an outstanding recipe for gluten-free bread from King Arthur Flours using their gluten-free bread flour. It does contain deglutenized wheat starch which gives it a much more typical taste than most gf breads, but may not be suitable for those with wheat allergies. And, I feel much better being gluten-free so will very likely continue to avoid or at least minimize gluten intake. Will be starting the taper to 3 mg of Budesonide next week and fingers are crossed that I don't relapse this time!