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Cross Contamination?


heather Goble

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heather Goble Rookie

I recently stopped eating gluten. I have dealt with annoying symptoms all my life that I just brushed off as just annoying stuff that happens. It wasn't until I was finally completely frustrated by them that I looked into what may be causing them. Extreme fatigue (from as far back as I can remember), horrible memory and lack of focus, bad coordination, stomach aches, gas, bloating, small weird things like tingling in my arms, numb fingers and toes and those are the ones I can remember for now. Anyway, upon looking all of these up I kept coming to the same conclusion- that they are all symptoms of gluten intolerance. So I ran all of them by my doctor and he did a basic blood work. I asked him to add a celiac test too, to which he replied, well you most likely don't have that. The blood work all came back fine, leaving me frustrated. A year passed and I am even more tired of being tired all the time, tired of the constant headaches and other symptoms. I found this forum and was surprised at the amount of people who test negative but still have legitimate gluten intolerances, so I decided to eliminate gluten. That was a month ago.

The first week was great. No headaches, no falling asleep on the couch after dinner, or nodding off after lunch, no more tingling in my arms or numb toes. Then I had a small piece of cake, which led to itching all over and shortness of breath. The following week I ate out avoiding obvious foods, but knowing there was most likely cross contamination- miserable with migraine headache. Drank a couple of vodka and tonics the next night (since I read that vodka was ok) ended up puking my brains out the next day, nauseous all day and arm tingling (didn't drink enough to have a hangover as this is not an uncommon drink and they were spaced out over hours). Turns out Grey Goose doesn't claim to be gluten free.... I work at an elementary school and we are doing standardized testing and offer the students those red and white round mints while they are testing, didn't really think about it and popped one in my mouth. Within 30 minutes I was itching all over and and had diarrhea. No one else in my house is gluten free which probably makes it hard to avoid cc. I am guessing this is what is happening? It seems like every reaction I have is worse than the one before.... I am getting so frustrated! I haven't been back to the doctor since going gluten free, but am considering contacting him about further testing or advice. Any advice would be greatly appreciated.

As for last years test results, this is what came back in the report. Am I wrong in thinking that this isn't the full test for celiac?

deamidated Gliadin Abs, IgA, which was 2.2

deamidated Gliadin Abs, IgG, which was 0.7

Thanks for any advice


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iamsarar Rookie

I was having a problem with CC in my kitchen. I finally made one cupboard for my husband and one for me did they same thing with our freezers one has gluten, one is gluten free. counters too, He uses one, I use the other. Any food I prepare for us is always gluten free. We had 4 friends over for dinner, 6 people total and I fixed a gluten free meal for everyone including dessert. Everyone loved it and were surprised it was gluten free....and vegan! Cook for your health. others will like it too. Also don't forget to check your pills, lipstick/gloss, shampoo and so on. I found gluten in my makeup and lip gloss as well as my shampoo and some of my vitamins. It was also in my generic nasal spray, the very thing I was taking for congestion was making it worse!!

I decided anything that was by my month (makeup) or on my hands (hand soap and lotion) had to be gluten free. After changing my pills, makeup, lip gloss, lip balm and shampoo I feel so much better. Look at everything in your life from head to toe!

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    • mermaidluver22
      @Scott Adams Thank you so much for this thoughtful and encouraging reply 💛 It really helps me feel less alone navigating all of this! I’ve definitely been strict gluten-free, but I’ll admit — in the beginning, I honestly knew nothing about cross-contamination 😅 so it’s very possible my gut is still healing from that. I feel very abnormal because I am not a typical celiac or a typical Crohn's, so it makes me feel very stuck. 
    • mermaidluver22
      Thank you so much for this thoughtful and encouraging reply 💛 It really helps me feel less alone navigating all of this! I’ve definitely been strict gluten-free, but I’ll admit — in the beginning, I honestly knew nothing about cross-contamination 😅 so it’s very possible my gut is still healing from that. I feel very abnormal because I am not a typical celiac or a typical Crohn's, so it makes me feel very stuck. 
    • nanny marley
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    • Scott Adams
      It sounds like you're navigating a complex situation with your celiac disease, and it’s understandable to feel confused by the GI world! While celiac disease typically affects the duodenum and proximal small intestine, it’s possible for inflammation to extend to the ileum, especially in cases of more severe or longstanding damage. Since your tTG-IgA remains elevated despite a strict gluten-free diet, this could indicate ongoing healing or subtle gluten exposure. The ileal inflammation might still be related to celiac, though it’s good your doctor is ruling out other conditions like Crohn’s, given the nonspecific biopsy findings. Some people with celiac do report ileal involvement, particularly if they have refractory disease or delayed healing. Keeping close follow-up with your GI and possibly revisiting your diet for hidden gluten sources could help. Hang in there—it’s a journey, and you’re doing great by staying proactive!
    • mermaidluver22
      hi, how are u now? any answers?
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