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gluten-free But Undiagnosed...help!
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My sister was diagnosed with celiac 2.5 years ago. I largely cut gluten out of my diet as well. Our house is almost completely gluten-free. When I lived away from home during college, I would eat minimal amounts of gluten (a couple pieces of toast in the morning sometimes, but typically my diet consisted of whole foods without gluten). This past fall I noticed that I was getting diarrhea/stomach aches in the mornings (after eating toast!). Then I went away for a weekend and was served lots of food with gluten in it (and remember I didn't typically eat much gluten). I didn't notice a reaction right away, but a day or two later I was experiencing lots of diarrhea and stomach pain that lasted for days. At that point, I connected the dots between my morning toast and other gluten consumption and my stomach issues and decided to cut it completely out of my diet (November 2012).

 

Anyways, I've been gluten-free since November. At home it's a non-issue because gluten-free is the norm. During the school year I lived with non-gluten-free people, but I made all my own meals and had a separate cutting board/cooking pan and always cleaned the counters, etc and really didn't have any issues. I just started a year of volunteer service (2.5 weeks ago) and am living in an intentional community with 7 other non-gluten-free people. Not only are there gluten crumbs around, but other people are preparing many of my dinner meals (and we moved into a house...so old cutting boards/pans/utensils, etc.). I also started eating oats for breakfast, which I had cut out of my diet. Anyways, I haven't been keeping track but for at least the past week I've experienced diarrhea pretty much every single morning (multiple bathroom visits for 2-3 hours but then it would clear up), which I thought might be related to my oats consumption, so I cut them out again. The diarrhea got particularly bad a couple days again, so I started making all of my meals myself (lots of rice and cooked veggies to help the diarrhea). The diarrhea has ceased, but I'm left with lots of stomach pain now.

 

Would celiac symptoms come and go like that (diarrhea for a few hours every morning?)? I'm definitely not going back to ever eating gluten, but I guess the question now is how careful do I need to be? Clearly I'm having issues that need attention, but does it sound like celiac/gluten sensitivity? It's a lot of work to get 7 other people to be careful about CC. I hate that I can't be tested for celiac unless I eat gluten, because after all the pain I've been through this week there's no way I'd play around with eating gluten! 

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It is very possible that you are getting gluten in your diet and you are reacting to it. All it takes to trigger the immune response is a small crumb, and repeated gluten ingestion will often make symptoms more severe. Is it possible to create a safer eating environment for yourself?

 

Is it possible that the water or food in the new place you are living is causing the problem? Is the water fine? If it's an old house, it could be molds or other chemicals causing a problem for you. Stress of living in a new place can throw some people off too.

 

Best wishes. I hope you figure it out and are feeling well soon.

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I think you have nailed the problem. But you have been so good about being gluten free it might not be worth trying to go all gluten to be tested. The blood tests for antigens and the biopsy tests both need you to be on gluten to be accurate.

 

However, you can get the DNA test at any time and do not need to be eating gluten. If I were in your situation, I believe I would do that first. You can order the kit on your own if you don't want to involve your doctor. If your genes come back positive for celiac, I would think you can take it to the bank. This would not prove that you actually have villous atrophy at this time, but it would prove that you COULD at any point in the future and that a gluten free lifestyle is likely a very good choice for you.

 

But even if your genes are negative for celiac/gluten sensitivity, that does not mean gluten isn't your problem. In that case you may want to pursue further testing, but I think it is very likely you connected the dots correctly.

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