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mm&j

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About mm&j

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    Female
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    Pennsylvania

  1. 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)


  2. 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) :)


  3. 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) :angry::angry:;)


  4. 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)


  5. :( 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) :(


  6. 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)


  7. 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)


  8. Has this happened to anyone else. I am not sure if this is still a reaction to eating a braut that was a beer braut (hubby didn't read the package ). This was about 2 weeks ago and since then I have been extra careful not to eat anything with gluten and we have not eaten away from home. My stomach is still a mess but the biggest problem is I can't seem to stay awake. I wil be sitting and watching a tv show and the next thing I know the next program is on.

    Now I do have other health issues and I have gone through all thoses and they are not causeing this. I don't have a fever or a cold. This is getting annoying I can't seem to get much done no matter how hard I try :angry:

    This all wouldn't be so bad if I was Sleeping Beauty looking for my Prince Charming. :D


  9. 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)


  10. Hi,

    I am a fairly new Celiac and I catch everything, and when I get sick, I get sicker than everyone else with the same thing and it lasts ten times longer. I have had a cough, and congestion since May and can't seem to get rid of it...been sick every day of the summer with it and despite feeling better as far as the gluten-free part...I feel like I have pneumonia and the doctor just thinks it is allergy related since I have had it so long. I'm calling her tomorrow for about the tenth time on this. So, it may be common for Celiacs. I just know that my experience seems similar to what you are describing.

    mm&j (Susie)


  11. Hi,

    For me, I never had any GI symptoms so my diagnosis took many years. I suffered with EXTREME fatique. If I was offered anything at all or sleep, I would choose sleep every time. I could sleep all day if I had the chance. I also had severe bone pain, joint pain, arthritis, dizziness, flu-like chills and night sweats, canker sores all over the inside of my mouth, a constant craving for salt, depression and anxiety...I know there were more symptoms but after 5 months I can hardly remember some of what I was feeling because I am doing so much better. I just wanted to ask if anyone after being diagnosed experienced an increase in their blood pressure or weird heart palpitations. Lately I feel like I can physically feel my heart beating in my chest with such pressure that it scares me. My blood counts such as white blood cells and platelets have always been low but were tested to be even lower after going gluten-free. Does anyone know of a connection between the heart/blood counts/blood pressure and celiac?

    Thanks,

    mm&j (Susie)


  12. This sounds yummy! Glad to hear it worked out well.

    This is just so amazing that I had to write. I live in Pittsburgh and my husband felt like going out to a Mexican Restaurant tonight. We have a new Mad Mex and an On The Border. I looked on both of their web sites and it didn't say much about ingredients. I then clicked on the forum and your message about Pittsburgh was the first one (or most recent one). Then you mentioned Mad Mex! out of how many possible restaurants and answered my question before I even had a chance to ask it! Thanks a lot. We are headed to Mad Mex. I am fairly new to this so haven't eaten out much since being diagnosed. Thanks again.

    mm&j (Susie)


  13. P&G Pet Care Update

    March 30, 2007

    I went to the Iams website and found this information:

    As promised, we are continuing to keep you updated on the Menu Foods recall.

    We know the Menu Foods recall has caused concern, frustration and anger among many pet lovers, including many of our own employees and their families. We want you to know that we care deeply, and we continue to take action on your behalf.

    We want to comment on the new announcement today (Friday, March 30, 2007) by the U.S. Food & Drug Administration (FDA) that they have found a substance called melamine in the wheat gluten of recalled products, and not the aminopterin, as earlier suspected by the New York Foods Laboratory.

    We can reassure you:

    First, there is no melamine or aminopterin in any of our Iams and Eukanuba dry pet foods on store shelves.

    In fact, Iams and Eukanuba dry pet foods to DO NOT contain wheat gluten. Our dry dog and cat foods are made exclusively by P&G Pet Care and not by Menu Foods.


  14. I have had low platelets and borderline low white counts for a while. My white count is finally up to normal. My platelets range anywhere from 89,000-130,000. This is called ITP. It is an autoimmune disorder which causes the spleen to attack platelets. As long as they stay above 30,000 you are usually ok. I get mine tested every six months. There are some others on here with this, hopefully they will respond. White counts will go up if there is a bacterial infection, and will go down if there is viral. Maybe you have a low level viral infection going on. When I had the flu this year mine went down to 2.5. but are now up to 6.7 - the highest in years. I read that optimal is 7.

    Thanks for responding. I didn't think anyone was going to since it isn't the most exciting of topics. I was scared that it might have something to do with the lymphoma that you hear about increased incidence of in people with Celiac disease.


  15. It has been a horrible 28 hours so far - I am told the first 48 are the most critical

    I woke up yesterday at 5:00am to my beloved weimerimer having a seizure our hallway, she is only 18 months old, and we've had her since she was only 7 weeks old. My husband and I were watching her come out of it, but my older daughter came out of her bedroom scared and she frightened the dog even more. My dog was so disoriented when she bolted outside, and she didn't even know who we were. I have never seen her run so fast and be so frightened...Our dog has never even been out of our yard. She is so kind, and loving, but afraid of her own shadow. - and followed me everywhere.

    We live in a rural area and I have lost dog on the radio, add in the newspaper, drove around handing out flyers with a picture of her, put them up on telephone poles, called the humane society, police, emergency management, our dog catcher, four footed friends, her vet, you name it, I think I have done it. Not a soul has seen her. I am exhausted, and so very, very sad. I even prayed to St Anthony, the saint of lost things....

    Our other dog died last year, he was a beautiful American Eskimo dog named Meeko.....he died from kidney failure - only ate dogfood, no table scraps - I was told the dogfood was contaminated - He was just 7 years old. I am not sure I can take this. My head feels like it is going to explode.

    Happy Happy Happy to hear you found your Emma. My boy Jake died last Friday, 2 days after his 8th Birthday. It was awful. I think not knowing would be worse in a way, so I glad you found her and your prayers were answered. My dog had Myasthenia Gravis and had lived 2 years past his diagnoses with lots of medications and even more LOVE. He died in the emergency Vet Clinic after we got back from a vacation at the Outer Banks in NC. At least he got to see the ocean and beach one more time. I think he relapsed, though, because of too much exertion and I feel really guilty about it. I am having a tough time so when I saw your post I went right to it...such a dog lover, anything with Dog gets my attention. I'm very happy for your good ending.

    mm&j (now without a J)

    I miss my Weimerimer - her name is Emma


  16. Hi, for years my platelet levels and white blood cell counts have been fluctuating low to lower to almost normal. I was diagnosed with celiac and have been gluten free for 2 months. My celiac levels have improved somewhat in that time which indicates some improvement and I am feeling much better, also, as far as fatique, bone pain, weakness, etc...I never had any GI symptoms. Anyway with my last blood test my platelet and white blood count levels have dropped even more and this concerns me. Anyone else with simalar low blood levels or any possible answers. Should I be worried?

    Thanks for any help.

    mm&j (Susie)


  17. Hi -

    I'm one of the newbies... I had an endoscopy yesterday and the Dr. won't be able to tell me the results of my biopsy for a few days. But he did note two things from the endoscopy - one is that I had a scalloped duodenum ? I think that is an indicator of celiac ? The other is that I have an indication of Gastroparesis, a disorder where the stomach takes too long to empty its contents. (My scope wasn't until 3 in the afternoon and I had not eaten since 6 pm the evening before - and there was still food present in my stomach).

    Have any of you had the same results ?

    This site has kept me sane the last few days. I've been on an emotional rollercoaster - due to a breakup of a long term relationship - but also in dealing with my health , and the tests. It's good to know that I'm not alone in dealing with these symptoms.

    thanks,

    Mary

    Hi Mary,

    I got the diagnosis of a scalloped duodenum today and had questions as you did. Did you find out anything else about it? It is confusing and a bit scary. I'd appreciate any help on knowing what this means from anyone. Is it just another marker of Celiac or something even more serious? I guess that I am in an anxious mood or state today...

    Thanks,

    mm&j (Susie)


  18. Hi,

    I was diagnosed Celiac a month ago and have seen some improvement. My MAIN symptoms were back and other bone pain and extreme fatigue along with about a dozen other lesser symptoms but NO digestive ones. I since have been diagnosed with osteopenia. I know there is no exact way of knowing, but could someone give an opinion of how long I probably had Celiac to cause a vitamin D level of 13.9 and a diagnosis of osteopenia? I am 50 years old. I have seen a bit less pain and fatigue since a month ago going gluten free. Thanks a lot.

    mm&j (Susie)


  19. I have a good one. I have always worn glasses, since second grade. My vision is so poor that without my glasses, I literally can't walk around unfamiliar places without assistance. One day I went to go look for my glasses, spent about five minutes frantically searching, AND THEY WERE ON MY FACE. Yeah. I know what you mean about the brain fog.....

    I also had some back pain issues, Susie, but I actually found that it went away the more exercise I got, so it's probably different than your 'normal' back pain. I had it in the upper back too, which is unusual. I also feel more energetic when I eat lots of eggs. If you tolerate them, organic or cage free eggs are a very good source of energy and vitamins, as long as you eat the yolk. MY favorite is scrambled eggs with cheese and diced tomato and avocado. It works if you take out any of the ingredients too, like no cheese or no avocado. It's a really nice easy dinner. I eat eggs five days a week usually and I've never felt better.

    Thanks,

    I've done the look for the glasses thing with them on my face, too.

    My entire back hurts from the neck down, including upper back. I think that pain is part of the reason I am so tired and physically exhaused. I do try to do water aerobics and swimming twice a week at least. That helps. Sometimes eggs agree with me and sometimes not.

    I truly haven't tried them since going gluten-free since my last experience with eggs wasn't the best. I will try again, though, and thanks for all the advice.

    mm&j (Susie)