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About HeatherR

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  1. Caryn, I have fibroid tumors and an enlarged uterus. Also some pain that gets pretty fierce at times. HeatherR Ravenwoodglass, I have many of the same symptoms as you wrote about yourself. I was curious about the nerve damage, whether it stays or not. I am on year 13 of misdiagnosis, and am concerned that much of my problems will stay. When you say residual nerve damage, how much do you consider "residual"? Thanks, HeatherR
  2. Well, I talked to my primary doctor today, who filled out the lab work for me at my son's pediatrician's request. But he doesn't know what it means!!! He said I have one of the genes: HLADQ2? He is sending the lab work to my son's GI, so I will get more information on Oct. 5. I've been staying on gluten until I know whether I have to have a biopsy. Will a full celiac panel show if I am celiac, or are there more tests besides the biopsy? Just curious as I'm having a hysterectomy soon, and don't know which to do first! Thanks, HeatherR
  3. Thanks so much for your replies! Yes, my son is off all gluten, and has been for years. He is also off all dairy. If we had to give up rice and potatoes we'd be sunk! We see the g.i. specialist next week and I am going to ask her about the biopsy. I know that six weeks of eating gluten will not show anything on the biopsy. I just feel so bad for him and since I have the same pain, ( I can take the other meds) I want to find out what's going on. Thanks for your help. It is much appreciated! HeatherR
  4. Joint Pain

    My son has severe joint pain. Does anyone else deal with this? He is 12, and is allergic to ibuprofin, Naproxin, basically the meds they use to help with this. I give him acetomenephin (sp?) but it only helps so much. Right now both of his heels are hurting him, and it makes it difficult to walk. Any suggestions? Is this something that will stay forever? He has had the celiac panel, and has the gene. He's been put back on wheat so they can do the biopsy. He'd been off wheat for 2 1/2 years before this, but still had the joint pain. I'm waiting for my results, but I'm afraid that with all the symptoms I've had forever, I have celiac also. I've been going to neurologists for years, and was diagnosed with ms, then undiagnosed. I'm just worried that some of the problems will be forever. Anyone dealing with joint pain? Thanks HeatherR
  5. I get the metallic taste too! I have at one point or another had everything you've mentioned except weight loss (I Wish!!). When I told my doctor that my tongue feels swollen, she rolled her eyes. I'm just waiting for my bloodwork to come back. I've been tested for lupus, but it was negative. I'm not ruling it out, since it can take a few times of testing before anything shows up, but I'm counting on alot of this being gluten related. HeatherR
  6. Thanks guys. I have been eating gluten, always. Is there a different test than the one I did? It just said celiac profile. I guess I'll find out soon enough. I really want to get started just to get some of this weight off. I'm having surgery soon, and I'd like to have a little headstart, ya know? HeatherR
  7. Walmart's brand of soy sauce is gluten free and very good. HeatherR
  8. Thanks for the input. I am still eating gluten at the moment in case I need to be tested. I have gained almost 60 pounds due to new meds for pain and such, and feeling increasingly desperate. As soon as I get the test results back, I'm going on low carb again. I feel much better and maybe I can get some of this weight off, or at least stabilize. I am really curious to see the results. HeatherR
  9. Hello all, This is my first post, but I've been reading through your posts. I don't even know where to start. My son has the celiac gene and has been BACK ON wheat for the last month or so to have his biopsy. He is 12. We've been dealing with this problem since he was five and the doctors would just give him a laxative and tell him he needs to try harder to go. Yep, why didn't we think of that? Anyway, he's been off wheat and dairy for 2 1/2 years now, and is sure enjoying himself ( As long as he takes his laxative twice a day!) Okay, after we found out that my son had the gene, and my husband (who is allergic to wheat) does not have the marker, I had to be tested. I'm still waiting for the results. But I had bought a book on celiac earlier so that my son and I could go over the things he could and could not have when he's reading labels. I decided to read the entire book since my son has the gene, and I wanted to know everything about it. I was floored!!! I have been ill since my youngest son was born! And I was absolutely shocked at some of the symptoms that come from celiac. I have been on disability for 6 years diagnosed with ms. I have a new neurologist, and he says I don't have ms, but I have something. My symptoms are so many, and on and off, but the absolute worst one is fatigue. I sleep all night long, and will be so tired when I get up that I will sleep for another four hours or so, almost daily. I have balance issues, dizziness, vertigo, shooting pains, nerve pain, swelling of my hands, feet, ankles, and calves, numbness, tingling, brain fog, problems using the right words, cognitive problems, memory loss, joint pain. There's more, but I can't think of it right now. My question is, has anyone else had these symptoms and have it be celiac? I know this is long, but I appreciate all who take the time to read it. HeatherR
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