Well this would explain things! Lupus and CIDP

    • Anonymous
      December 27, 2008 at 1:26 am

      Hey family! Well the Christmas Holiday’s certainly was a good one. We really enjoyed ourselves. And still having a nice time with my family around. I am also feeling a bit better! My sister came over on Christmas Eve Day and had to tell us some really unusual news. I could not talk to good but did hear what she had to say! And this would certainly explain why I have gotten so sick over the years with my Lupus and getting other problems. The bad thing is over the years I have felt like a hypochondriac telling people about all the things I have been diagnosed with.

      Funny thing is my one daughter is starting to get sick but too was diagnosed with Lupus. Her’s has been mild. My son gets bad headaches. My mom stays sick and I have a nephew too that also has been sick. I have been the worst and my nephew too has been about as sick as myself. He is only 18. My sister had to pull him out of school and let him get his GED because he missed 47 days from school. The poor boy has been following my path of illness and most of our symptoms have been the same on alot of things. He can’t even function. I thought he had Lupus because of me.

      I know Lupus too can be genetic and kept telling my sister and mom that I thought they too had Lupus. Well we got ourselves a shocker! My nephew had a biopsy and endoscopy a few weeks back and he tested positive for Celiac Disease. And because of so many of us having problems we all now have to get tested because of the genetic factor. When I see my doctor in January I have to request the lab test and endoscopy to see if I too have Celiac. A food allergy to Gluten. A Wheat, Barley and Rye allergy that makes a person get very sick.

      I have been so sick these past few years. But I started getting sick even in my childhood. And as the years progressed I just kept getting sicker. Everyday has been a new experience for me. My sister found an article online and it stated that there was a link between Lupus and Celiac. Wow! What I read about Celiac. It certainly would explain why I am not getting better with my illness.
      Ever since I was a child I had problems with Irritable Bowel Syndrome. I thought I was in Labor. It would hurt so bad. So it all started with Bowel Problems. Terrible upset stomachs with vomiting. Had upper GI and nothing showed up. Got checked out with a Gastrologist and he said IBS. Never did any labs and never did an Endoscopy. I too had a rash that would come and go.

      Then I got diagnosed years later with Lupus. I was in the ER with IBS several times knowing there was something wrong. But nothing was ever found. Since my Lupus diagnoses and all the symptoms I have I wonder if Celiac is my problem?
      Kind of strange how when I read the symptoms of Celiac they sounded just like me!
      Lupus, Neuropathy that turned into CIDP, Osteosporsis at the age of 35 and the doctor claimed I had it a while. Iron deficiency, B-12 defiency, Thyroid problems, High Cholesterol, Migraines, Upset Stomachs, Vomiting, Itchy Rash, Vitamin D defiency, Fatigue that feels like cancer. And the list goes on! Heartburn all the time that never goes away. Hiatial Hernia, Diverticulitis, Asthma, Cough that never goes away.

      I might not even have it but I am going to get tested since we have a family member with it now. It would be strange if all the symptoms above were being caused by a Gluten Allergy. And I eat alot of pasta and breads. Went into my food pantry and I had a ton of foods that had glutens. They say when you stop eating the Glutens you end up getting better.
      But if you have had it a long time the damage might not all be reversible but you can get better. Might be my case along with my mother of not getting 100 percent better.

      Wouldn’t this be something if Celiac was most of my problems and that is why my Lupus is not being controlled? I really don’t want to tack on another disease to my list of growing problems. But heck! If this is what is causing all my problems making me so sick, then I hope they do find Celiac! LOL! That would certainly explain why I have been terribly sick and totally non functional. But it would also be a miracle for me too! For if I stop all the gluten eating I would start getting better instead of worse. Maybe then I would get my life back! My old life back! But I won’t be 20 years old with alot of spunk. Just will be feeling better and able to function some again!
      Will keep you posted. I read in the article that if those with Lupus stopped eating Glutens that they improved and actually got better.
      I know we have a few in here with Lupus and thought you might want to research the Lupus with Celiac Disease. Especially those with Bowel or Intestinal Problems. Who knows? We all that have it might see ourselves getting better if we stopped the Gluten.

    • Anonymous
      December 27, 2008 at 1:50 am

      I just had surgery for having adhesions around the lower bowels because of a C-Section. The doctor seemed to think that was why I was having pain in my lower abdomin. Hmm! If I don’t get IBS again after having this surgery, then they fixed my problem. But what if they really didn’t fix my problem? Maybe this was Celiac causing the pain and not the adhesions.
      So now I am wondering if I had a surgery that really was totally useless! Now I have a fear of getting IBS again for I don’t know if that adhesion problem was really my problem at all.
      And after reading what I read about Celiac, it really is rather scary but is a more treatable disease that can be reversed. Maybe I might get lucky here and have something that can reverse all these bad symptoms I have had. Getting better and much more healthy again!
      OHHH! Would I love to see that word Healthy! I’m so sick of taking pills! Not to mention seeing doctors all the time. This specialist and that specialist to another specialist. I hope 2009 I will see less doctors and a better life! So tired of seeing doctors and not seeing real people. Meaning me visiting family and friends again and not having to take my huge bag of medicines with me everywhere I go!

      You know what is so annoying! Going to the doctors and they want you to brings all medicines with you when you go. So before I go I have to get a Walmart Grocery bag and when I get done, the bag is full of grocery pills! Not some small bag! A large bag full!
      Then I go in to see my doctor and there is a 90 year old lady with a tiny little bag of her medicines. I get embarrassed loading all those pills.
      And then going to the ER at times lugging that bag. Feel like a drug addict taking her pills with her and wanting more! Not true but boy do people stare at me when I am at the ER holding a huge bag of pills.
      I just hate being sick! But I am not the only one that is sick! I am pretty sure many of us have the same sized bags!

    • Anonymous
      December 27, 2008 at 7:31 am

      I just graduated to a grocery bag. When Dr. put in all my meds to be filled, the pharmist gave them to me in a grocery bag. It is not a good feeling!
      Hope 2009 is a lot better for you.

    • Anonymous
      December 27, 2008 at 9:55 pm

      Hey Shirley! LOL! Maybe we should start a website and call it the Grocery Pill Club! ๐Ÿ˜€ After my surgery the doctor tacked on 3 more RX’s. With all the pills they have me on! I am surprised I have not overdosed! I hate taking all these pills! I remember when they first started me on treatment years ago. The pills would knock me flat on the floor. Now it’s like they don’t even phase me.
      My body has developed a tolerance to them all but I wished I didn’t have a daily regimen of taking so many pills.
      But I better be fortunate that I don’t have more to take. I have a feeling there are many more much worse than I that have to take pills like me and probably more! I just hope I never end up having to take a suitcase to my doctor’s office! ROFL! Hugs

    • Anonymous
      December 28, 2008 at 5:08 am

      Hi, Linda.

      You’ve got a lot on your plate (and in your bag).

      I’ve had CIDP for ten years, but four years before the CIDP symptoms started I had problems with breathing and swallowing that went undiagnosed until last year, when it was discovered that I have another autoimmune disorder — sarcoidosis. This year it was noted that I probably also have a third autoimmune disorder — vasculitis.

      After two years of spiralling downhill, with IVIg no longer working and questions as to which of the disorders is doing what, my neuro decided to take an aggressive attack which would — we hoped — deal with all three. So I’m getting monthly three-day courses of high dose IV steroids (my next course starts dull and early tomorrow morning), along with daily azathioprine.

      Regrettably, autoimmune disorders tend to run in families (and usually different disorders: one with CIDP, another with RA, another with MS or Lupus, etc.), and a person with one has a greater chance of getting another. And it’s not unusual for families to have odd symptoms which go undiagnosed. Some doctors recommend genetics work-ups for entire families when one member is diagnosed with an autoimmune disorder — my family have all mentioned to their doctors about my problems.

      AAR, there’s very good information about autoimmunity at [url]www.aarda.org[/url].

      Best wishes in the battle,


    • Anonymous
      December 28, 2008 at 11:30 am

      Hi Linda, read your posts and read up on Celiac. many of the symptoms you are discribing seem to fit. If there is any suspicion wouldn’t it be a good idea to make an experiment. For the next few months avoid anything that contains gluten. There are lists of what they are. It may be a hassle but be consistent.

      Take care

    • Anonymous
      December 28, 2008 at 11:05 pm

      Hi Linda,
      I worked with a guy who had celiac disease. He thought he was going to die. He was very sick for such a long time until they finally figured out the cause. He did very well once he got a diagnosis and started the diet. Also there are studies regarding the possibility of a link between celiac disease and MGUS/multiple myeloma. Celiac disease can make you very sick and can affect many things. The gluten-free diet is quite difficult to follow as gluten and wheat products are hidden in so many foods. There is a blood test which can be a good indicator for/against celiac disease, but endoscopy and biopsy are recommended if you have a family member with the disease and you have symptoms, which you clearly do!! Good luck, Linda!

      BTW — regarding autoimmune issues: In our family, RA, MS, Crohn’s disease, GBS and MGUS.

    • Anonymous
      December 29, 2008 at 7:16 pm

      Hi Norb! I called my doctor today and told the nurse about it and she called me right back. Has me coming in on January 5th and they want to take the blood test and then scheduled an Endoscopy. January 9th. After looking at my records he too seemed to think that would not be a bad idea to test me and see what happens. In the meantime, I looked up a few things again today and Andy is going to get some groceries tomorrow with a food list I made up.

      Deb! Sorry to hear you have Sarcoidosis. Not fun having. I have asthma and is gets pretty severe at times. The breathing stuff is no fun! I learned real fast about having more than one auto immune problem. I never knew this until I got on this board and talked to Kitt! I too have had Vasculitis but that has been controlled a while now. But I had CNS Vasculitis many years back. That was a horrible experience! My hubby came home from work and I had a 105 fever with horrible head pain and was seeing frogs crawling on the walls. They rushed me by ambulance and it turned out to be CNS Vasculitis. I was in the hospital 2 months. High doses of pulse steroids back then. I survived that and survived lupus that was very nasty back then.

      BTW and Norb! This is strange! For years my husband has enjoyed cooking on the grill. And he gets spells where he will want to cook dinner. The summer time on the grill he is constantly cooking. Well everytime he cooks, I would end up getting terribly sick. For years! I have watched him cooking my food because I found it strange me getting sick and did not want to think my husband was giving me poison. LOL! But the thought did enter my mind! ROFL! He used Soy Sauce and certain Sauces on the foods and after checking them out today. They have Gluten in them. So technically he has been feeding me poison but didn’t mean too! ๐Ÿ˜€ ๐Ÿ˜€ I just couldn’t figure out why the man would want me dead! We get along great! But then I thought about the Black Widow movie I saw where she was all lovey dovey and was killing her husbands.
      I have seen myself get so sick after I ate from his cooking that I even asked a doctor to check me for poison. Oops! His cooking tasted great! So it wasn’t his cooking but what he has been putting on the food that is making me sick. That is if I do have Celiac. Never told my husband I did that! But it did cross my mind. After looking up Celiac Disease and the foods that can cause problems.. maybe that is why I am not getting better! I have felt so bad that it does make you feel like you are dying. Ended up in the ER several times too!
      But now that I look back the foods I have been eating has been like eating arsenic poisoning. Starting tomorrow I plan on going Gluten free and seeing what happens. Going to take a while to remove the toxins but if this is the problem, I need to start now and maybe I will get better! We shall see what happens.
      I really felt bad thinking my husband was poisoning me! LOL! But when you get sick everytime he cooks you do get a bit worried. I have watched him cooking too and would pick the one he had for himself and still got sick. Then I figured out it was the spices he was using on some things. So I bought the spices an they made me sick!
      I might not even have the Celiac but to now have a family member with it and my symptoms are simular maybe that is why I am not getting better.
      My New Years Resolution! Quit eating Gluten, loose the Prednisone pounds and hopefully stop seeing doctors every two weeks and pray I get back to every 3 months and it would be really fantastic if I get to 6 months seeing them. One step at a time!
      Have a great evening
      Linda H