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mm&j

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About mm&j

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    Female
  • Location
    Pennsylvania
  1. Just found out how :) There is a button labled "add me as a friend" under the persons avitar/picture when you visit their profile.

  2. I have no idea how to do friends list on this site. I am extremely gluten savy but not so technology savy. Sorry I couldn't really help.

  3. By the way, what does GERD stand for? I am assuming Gastro-something... I had absolutely no Gastro symptoms by the time I was diagnosed. My intestines were as smooth as glass by then. mm&j
  4. God Bless you, I feel your discouragement. It is probably true that you are super sensitive to even the most minute amounts of gluten or perhaps have refractory sprue or unresponsive Celiac. There are forms of medication that people are put on to help with these conditions and promote healing. I think they start with prednisone, but I am not sure. I am just writing without researching , but I will look up a few things and get back to you. In the meantime, ask your Dr. friend for a recommendation of a specialist. I think that it is crazt to think that Drs. only know about this in Europe or the East coast. You definitely need someone more knoledgeable than him (and not a nutritionalist) I will write back if I can think or find out anything more to help. I am 52 and was diagnosed at 50 years old...probably have had Celiac for 20-30 years. If that is the case with you then it can take a long time to recover...so please don't give up hope. Susie (mm&j)
  5. That's funny, I was just headed up for a nap before I read your post and it is only 9:45am! It does get better and everyone is different depending on many factors, especially how long you may have been suffering with the disease before being diagnosed and how much damage to your entire body has been done. Before I was diagnosed, I litterally slept round the clock, except for getting kids ready and off to school etc. I would get up to do one chore, then back to bed all through the day. I wasn't diagnosed until age 50. You didn't say how old you are, but I probably had Celiac for 20-30 years I expect. Hopefully your recovery won't be as long as mine. AS I've read in the posts, some people feel better in weeks, not months or years. The biggest key is the gluten. Be very careful not to get ANY and you will recover faster. Welcome and good luck! Susie (mm&j)
  6. I was looking up another medication and I saw that Calciferol drops by Schwartz was listed on the gluten suspected list. I was horrified. My pharmacy told me that they looked up all of my medications and they were all gluten-free. I have been taking these drops for Vitamin D for 2 years, ever since my Celiac diagnosis. Does anyone have any information that they know about this product? I just want to cry if this is true. Help!!! Thanks, Susie (MM&J)
  7. Nancym- thanks for the information. I actually had googled and found that kiskas.org and signed up. I also just had a big piece of steak and salad for lunch and am going to limit starches even more than I have. It can't hurt I'm sure until I am actually being diagnosed. mamaw-I am in Wexford. I am Celiac-diagnosed in 2007. My thyroid is fine, no fibromyalga and I am taking Vitamin D and a multiple B vitamin. I know that depression slows the immune system even more but with this constant pain and fatique, I am having trouble at the moment. Thanks for your responses. I really appreciate it. Susie (mm&j)
  8. I need some help. I have been gluten-free for over a year. My severe bone pain and fatigue is not subsiding. It is torture to get through the day. My husband wants me to get my 'Joy" back. I can't even comprehend what joy is anymore I am in so much pain and depression. I am suspecting that there are other autoimmune diseases in play along with the Celiac. I have been to a new Dr. who seems eager to "figure me out" but I just was reasearching it myself and AS or Reiter's Syndrome sounded like a lot of my symptoms like spine "fusion", plantar faciitis and just about every other symptom listed. I know I shouldn't "self-diagnose" but I have been suffering for over 2 years and the Celiac diagnoses and subsequent gluten-free diet hasn't significantly helped my bone, joint, muscle and fatique problems OR my worsening depression. I would appreciate anything related to the subject especially if there is some HOPE involved. THANKS SO MUCH, Susie (MM&J)
  9. I was reading over posts and haven't been on lately. I have been gluten-free for over a year and my joint, bone pain and fatique haven't gotten any better. I went to a new Dr. and he is going to "research" my complicated case. He seems like he thinks another autoimmune disease my be in play alo and I agree. Could anyone give me anymore information on AS or reiter's syndrome that may have it along with Celiac? I'd appreciate any words of hope and encouragement at all. By the end of the day, actually late afternoon or early evening, I can hardly move...I feel like my spine is fused together. Anothe problem is that I can sleep for 10-11 hours at night and wake up feeling worse than when I went to bed. HELP! I am also in a HOPELESS depression at the moment. Thanks, Susie (MM&J)
  10. Can I add that I am so depressed and feel so hopeless that I am in tears every day?
  11. I just wrote another post about being extremely discouraged and then I saw yours and wanted to say that yes from the beginning, extreme fatique and sleepiness have been some of my biggest issues. I feel like I have been drugged or perhaps had 5 margaritas and then am trying to function. It lasts long after I injest some gluten. I really don't know what to do anymore. I am so careful and then perhaps I get a crumb or some cross contamination and I am sick and TIRED for a month or more. mm&j (Susie)
  12. It is Sept. 9th. I know I got some gluten, (very little) at the middle to end of July so that is over 6 weeks ago and I am still experiencing numerous symptoms. There seem to be a string of things that happen to me. I'll try to put it briefly...first intestinal problems, then the skin rash on elbows and behind knees, followed by extreme fatique, almost like I have been drugged, flu-like symptoms, cold sores all over my mouth and tonque, now I am experiencing extreme bone pain and achiness and so depressed after more than a month of this that I am so irritable that I can't stand myself and don't know how my family can. Each symptom lasts at least a week, some overlap, but it is always this seemingly never-ending chain of symptoms. Does anyone else experience anything else like this. I was diagnosed a year and 1/2 ago and probably been gluten-free for over a year with the exception of the accidental times that cause so much distress. Thanks for your time. mm&j (Susie)
  13. Thanks Elaine for your response. I just logged on after a few days and noticed yours and other replies to some of my questions. I appreciate the information and insight on the heart beat/palpatations and blood pressure. I will check with my doctor as I have an appointment tomorrow. Thanks again. mm&j (Susie)
  14. I forgot to add that I always get those blisters in my mouth and throat, too.
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