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I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days.
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Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
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The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative. I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions: 1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten? When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
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By Serena Rodriguez · Posted
You've already identified the issue. You cannot have ANY gluten in your home EVER. It's not optional for everyone who lives with you to have a dedicated gluten free diet! And anyone who comes to visit you cannot bring anything gluten-containing into your home. All gluten containing items need to be thrown away, beauty/bath products included. All pots/pans, dishes, utensils need to go through the dishwasher. Anything too porous or delicate for the dishwasher needs to be thrown away and replaced. Your toaster needs to be thrown away and replaced. Your oven, stovetop, and all surfaces throughout your home (bedrooms and bookshelves too) need to be thoroughly washed. All of this needs to happen in the same day because you risk contaminating other parts of your home if you do only part of the job. There's no such thing as a "safe" amount of gluten in your home. Not putting your foot down means greater risks into the future for vitamin deficiencies, diabetes, damage to your thyroid, cancer, rheumatoid arthritis, and more.
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