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DJ4HEALTH's Photo DJ4HEALTH Posts: 39,750
8/27/11 11:16 P

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Hi and welcome to the team.

Dorothy





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CINDYTW Posts: 5,783
8/27/11 10:20 P

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emoticon The testing really isn't worth it if you are not concerned about an "official" diagnosis. You know what you have to do and diet is all that there is for Celiac disease anyway. I had a broken glass feeling in there, probably quite similar! I had a positive blood test while on gluten but refused the endoscopy because I wouldn't go back on. Let us know if you have questions and do read through old discussion topics!

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ILLINITEACHER52 Posts: 7,256
8/27/11 9:59 P

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Welcome to the team! I can't eat spelt either and do better if I avoid most grains. I can eat quinoa and make a trip to Whole Foods once a month or every other month to stock up on things not sold in stores in my town. (The local stores are starting to offer more gluten free foods. Some will special order if you make a specific request.)

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LOSINGIT23 SparkPoints: (3,104)
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8/27/11 7:16 P

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Dot my heart goes out to you. I can relate to that awful grappling hook in the intestines thing it's so rough. So how is your lifestyle going? I hope you are able to avoid gluten and heal and stay healthy. If you ever want some advice or just some encouragement spark mail me.

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DOTCHILATHAM's Photo DOTCHILATHAM Posts: 198
8/27/11 7:10 P

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I went to a dietitian last year and they ran a bunch of tests and figured out I am allergic to 47 different foods. I was really bummed to lose wheat but it said I didn't react to spelt. I spent a month making sure I stuck to only what I could eat but living rural means no "fancy foods". So I didn't have ANY bread for quite a while.

Eventually, on one of my trips, I bought some spelt bread that I found and made a sandwich. I was so happy... until awhile later. I was in so much pain and I swear I stopped at every rest area on the way home. It felt like someone was running a grappling hook through my intestines. I told my dietitian about this and she said I might be gluten intolerant or have celiac disease.

So I went down the list of foods I can have (not allergic to) and highlighted all the ones with gluten and for the next couple months I would try one or two every couple weeks. I always have the same reaction.

The GI Specialist wanted to run a test for celiac disease and I told the dietitian this. She told me that if I avoid gluten in my diet (like I've done since then) that I could end up with a false negative test.

She suggested that I eat something with gluten before the test OR I could skip the test and forgo eating any gluten since it's obvious that I am gluten intolerant at the least. I told her I was not doing that to my body again. It hurts too bad! So for now on, I am on a gluten free diet.

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