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LCM

788d

I’m so frustrated. I don’t understand my body. I had a blood test off the charts for celiac and a biopsy showing mild damage consistent with celiac. I’m 32 and had symptoms for 9 years without a diagnosis until recently. After months of being strict about gluten and redoing my whole kitchen and skin/haircare routine, my symptoms remain unchanged. I have no idea what I’m doing wrong. I feel like a failure. I am so mad at my body. No doctors can figure it out. Has anyone else had this experience? What did you do to get it all to stop? I hate being this medical mystery all the time. I just want to feel better.

Top reply
    • Parade

      730d

      Also not sure if you are someone who goes to church or not but communion wafers have gluten in them

    • Parade

      730d

      Also not sure if you are someone who goes to church or not but communion wafers have gluten in them

    • Parade

      732d

      I had to cut out dairy and gluten and also focus on gut healing, lots of bone broth, collagen, natural gluten free foods like meat and veggies that don’t have gluten. Once I did this and removed other food sensitivities my numbers got a lot better

    • Cortnie

      736d

      I would cut out dairy too if you can because lactose and celiac go hand and hand… also check for hidden ingredients with maltodextrin, celery powder, dextrose, you can be irritable to corn because it’s sometimes grown in adjoined Fields to gluten. Also check to make sure nothing is processed in a facility with gluten or wheat. Good luck in your journey I hope this can help!

    • Prismatic

      780d

      It can unfortunately take months to years for the intestinal lining to recover and allow you to properly absorb nutrients :( it sucks, and I hope it gets better for you Also, I have personally never heard of gluten being stored in fat -- it's a protein, I can't imagine how it would be fat soluble. It also can't be absorbed directly through the skin because it's a very large molecule. (if it gets on your skin and THEN into your mouth, that's a different story)

    • Peej

      780d

      Try using Nerva to get those stomach issues to settle quickly. It is a hypnotherapy App and it helped me SOO much! I totally feel you on feeling like a medical mystery. It sucks. So sorry.

    • thembeaux

      780d

      i had to be strictly gluten and dairy free for 2 years to get better, and now i can have dairy again. there’s a light at the end of the tunnel!

    • Sanzita

      784d

      Hi! I have studied in detail Celiac disease, and I can tell you that it is related to more commorbidities , so, lactose intolerance can also cause GI symptoms or other allergens.. try one by one each week to see…

    • HeyReese

      786d

      This happened to me. For me, I found gluten in unexpected places. And I kept getting glutened, which makes recovery take longer. It took 2 years before those symptoms started getting better, but I still get cross-contaminated most places here (I’m in a rural community). Also, I found out I had other food intolerances (dairy, eggs, rice, red wine). I’m a little out of it today, but search dairy and gluten sensitivity/celiac disease & you’ll see it’s a common issue. The eggs I figured out on my own. The rice & red wine was a specific muscular test that a functional medicine doctor did. The rice & eggs seem to be the most problematic for my GI tract

      • LCM

        786d

        @HeyReese Thanks for the intel. Rice and eggs are such a big part of my diet right now. Sigh. I guess I’ll ask for more tests 😕

    • LCM

      786d

      It just… makes me want to eat gluten and move on. I don’t want to have to worry about what air I’m breathing and if I can ever eat out again. I know I’m sounding dramatic right now but it feels like I can be “healthy” and quarantined forever or “unhealthy” and live my life again. I lived with this for 10 years already. Sigh.

      • Pidgeon

        763d

        @LCM I understand how you feel, when I was first diagnosed with celiac I felt so overwhelmed and like I could eat none of my favorite foods. I can say now after being gluten free for about four years now that I can still enjoy stuff and I don’t have to suffer because of it. Things will get better, I promise you. And there’s way more gluten free options now that there’s awareness being brought to it :)

    • Kim156

      787d

      I agree with PandaGirl621. Months seems like a long time but it really can take a long time to completely purge your body and heal. I’m definitely not a doctor though so you could be experiencing more. One of my friends can’t even be in a room with gluten- she gets that affected. For me, I have similar symptoms when I have soy and milk too so I had to cut out a lot more. I also didn’t realize that wine was affecting me. I also had to completely stop eating at restaurants recently and can’t eat at others’ houses anymore because I’d get glutened even if I asked for gluten free. The smallest bit of contamination can really ruin it all. It’s so easy to get discouraged but I hope you at least don’t feel alone in this. 💙

    • PandaGirl621

      787d

      It took almost two years for my body to completely purge the gluten because it gets stored in fat and so burning the fat can re release it into your body and cause flares

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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