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About icelandgirl

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  1. Hi Lisa, I completely understand why you didn't do a biopsy on your daughter. I went through the appendix thing myself...not fun! I was diagnosed with just bloodwork and no biopsy, but did have the full panel. I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests. Since she was already willing to test you, I'm sure she would be willing to order these. Good luck!
  2. Big ((((hugs)))) to you sweetie. I'm glad the surgery is behind you...that's always tough. I'm so sorry that you are facing this, but you sound ready to taking it on. Please do keep us updated. As Gemini said, we really do care. I will be praying for you.
  3. Oh boys mom, I'm so sorry. (((((Hugs))))) I have not been through this either. I would follow Geminis advice on a nutritionist. I wish I could offer something more. Hopefully your boys are surrounding you with love right now. Do whatever you can to take care of yourself now. Be good to yourself. Pray, meditate, yoga, etc. I hope that someone with more experience chimes in with advice. We are all here for you. (((((((Hugs))))))
  4. That's so wonderful cyclinglady! I'm so happy for you...this makes me want to head to Europe!
  5. Everything Gemini said!! I'm just wondering about ordering your own tests online? I have not done this, if anyone has please chime in. I found this website where you order and pay for it, they send you a lab req, you go get it done and get results. It might be worth a try? I know that you're getting discouraged. Hang in there. (((HUGS)))
  6. Hi Mom...I take Florajen 3. It has worked really well for me. It is kept refrigerated. I have a hard time finding it where I live so I usually have to order it.
  7. Totally agree Cristiana!
  8. Hi Matt, Since celiac impacts the whole body...I think kidneys are affected. I have kidney stones and they are super fun(not) and my urologist says that it's fairly common with celiac and malabsorption. I don't know specifically about kidney disease, but when I was in the hospital passing my stones...prior to passing, my GFR was around 60. A few weeks later when my doctor did bloodwork it was 87. Here is some info that may help.
  9. Hang in there is hard and frustrating. Good job getting that appointment moved up. I've done too...I've called daily looking for cancellations. I can also remember counting down the days until my appointment. ((((Hugs)))) and please let us know how it goes.
  10. I get so frustrated! My friend's mom is 67...there has to be a reason for this. And all she says is, they have no idea how she can be in end stage liver disease! Anyway, I'm doing ok. I got cc'd on vacation which stunk. I had forgotten how terrible it feels. Ugh! The good news is that my vitamin D level is finally moving up...not inching. It increased by 3 points in the last 6 months. Previously, it was inching with increases of .5 or .6. So I'm pleased that I'm absorbing better. Bartie's passing really shook me up. This disease is a scary thing as so many people go undiagnosed for so long. Then other people have disappeared from the board(nvsmom), who were huge contributors and I worry that they aren't doing well. But I am a worrier. How are you?
  11. Gemini...I'm so sorry about your brother. (((Hugs))) It's just awful...I too have relatives that I believe have celiac. One uncle is deteriorating...and in and out of the hospital. He hasn't been tested for celiac and no one wants to hear it. I also have a friend whose mom has been diagnosed with early onset alzheimers and end stage kidney disease. She's not a drinker at all. This is after surviving breast and lung cancer and she's never smoked. Last year she was in the hospital with severe diarrhea and dehydration. Has she been tested? No. I've talked to my friend and she says she doesn't think she'd go gluten free anyway. makes me so sad.
  12. Hi RMJ...I'm so glad that your spine is fine...that's great news! Think abouthat trying magnesium? It has helped my super annoying tingling so much. Thanks for letting us know.
  13. Oh goodness...I'm sorry. ((((((HUGS)))))) I really feel for you and hope that you feel better soon. It is dreadful having it happen and so hard when you don't know what got you. I second Gemini in saying do keep taking a probiotic...I really do think it helps. Take good care of when you can. Hope you are back to feeling good soon.
  14. Hi RMJ...I'm glad you've gotten some results and are closer to an answer. Please do let us know what comes out of your MRI!
  15. Hi RMJ, I too have had peripheral neuropathy...particularly bad in my feet, but in my fingers at times too. And I had high-ish B12, so it wasn't that. I do have Hashimotos so was going to suggest thyroid first...let us know how those tests come out. Hopefully your Dr did a full thyroid panel. I have noticed that mine gets worse when I'm hypo. Even getting my thyroid in a good spot didn't completely take care of the tingling though. I asked my GP about it last year as it was really driving me crazy. He suggested magnesium...I started that and it has helped so much! He suggested 200-400mg a day. I'm super sensitive to everything, so I started off slow with 100 and slowly worked my way to 300 and have stayed there. This has made a huge difference for could try it and see? I hope you get some answers and this stops for you...I know how annoying it can be.