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    Old 01-26-2009, 04:45 AM   #1
    Babs659
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    Looking for someone with a similar story

    I'm trying to find out what's wrong with me. I'm a 49 year old marathon runner (but I'm by no means fanatical) so it's not normal for me to be weak and lightheaded.
    I've been ill since Thanksgiving---just not normal. But I have periods where I'll feel pretty good---just a little fatigued. I have had Hashimoto's for years and was just diagnosed with Sjogren's and was put on Plaquenil. But still not feeling well. Bloodwork then revealed low thyroid (my meds had to be upped), low ferritin and low Vit D. Could be an absorption problem. I'm having an upper endoscopy and colonoscopy tomorrow. My celiac antibody test was negative, but I do have a lot of symptoms.

    Anyone else have lightheaded and fatigue as the main symptom and had negative celiac antibodies, but it turned out to be Celiac? Was a gluten-free diet the "magic pill"? Is Celiac common among Sjogren's sufferers?

    I just want the old me back!

     
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    Old 01-26-2009, 10:19 AM   #2
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    Re: Looking for someone with a similar story

    I don't have Sjogren's but sicca fom scleroderma. Although I had some antibodies, my test wasn't particularly definitive, according to Dr. However, I was diagnosed with Celiac and have been gluten free for a few years. While I wouldn't call the diet a "magic pill" (more like a pain in the patootie) I do feel better. In any event, not eating gluten will not effect a non-gluten sensitive person for better or worse. I do not know if celiac is associated w/ Sjogren's but I am pretty sure that it is associated with Hashimoto's. Of course, I am only a patient and not a doctor. Call your doctor for a discussion?

     
    Old 01-26-2009, 01:10 PM   #3
    Babs659
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    Re: Looking for someone with a similar story

    Thanks, GD. And was lightheaded-ness your main symptom? Did that resolve?

     
    Old 01-26-2009, 07:45 PM   #4
    watoozie
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    Re: Looking for someone with a similar story

    If you was recently put on Plaquenil give it a chance - It took me 4 to 5 months before I really felt the benefits. I take 200mg twice a day. Take it with food, it can be hard on your stomach. I have Lupus and Sjogrens, I have my flare once in awhile, but I do not feel near as bad as before the Plaquenil. Hope you get to feeling better.

     
    Old 01-26-2009, 10:10 PM   #5
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    Re: Looking for someone with a similar story

    I tested negative for celiac antibodies twice before being diagnosed thru biopsy. I've taken immunosuppressant medication for years for my juvenile arthritis - and I do mean years, like 30 - I don't know if that had some effect on the blood tests.

    It took four months for Plaquenil to start working for me. I haven't been on it in ages but since my current meds are doing squat, I've been thinking about trying it again.


    There is a connection between Sjogren's and Celiac. Having one means you have a slightly higher chance (than the general population) to get the other.

    I know if you have Celiac there's a number of other illnesses you're more likely to get: Sjogren's (as high as 15%), Juvenile Arthritis (6-9%), Type 1 Diabetes (3-8%), autoimmune thyroid disease (5%), Vitiligo (no data), autoimmune hepatitis (6%), other autoimmune liver diseases (6-8%).**

    Research has shown a 3% prevalence of primary biliary cirrhosis in people with celiac disease. In single cases, celiac disease has also been found to be associated with autoimmune cholangitis and primary sclerosing cholangitis.

    **numbers and fancy spelling are from the National Foundation for Celiac Awareness

     
    Old 01-27-2009, 05:50 AM   #6
    Babs659
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    Re: Looking for someone with a similar story

    Thanks, Auntie. I'm hopeful that it's just a dietary thing and I can control it. The light headedness and weakness are wrecking my life.

     
    Old 01-27-2009, 11:08 AM   #7
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    Re: Looking for someone with a similar story

    Quote:
    Originally Posted by Babs659 View Post
    Thanks, Auntie. I'm hopeful that it's just a dietary thing and I can control it. The light headedness and weakness are wrecking my life.
    I'm not sure if I would call it light headed - more like fuzziness or slowness, and very, very fatigued. But I'm not sure if that was the Celiac or the CREST. I too am on Plaquenil (and Methotrexate, too) and needed to give it a while before the fuzz and fatigue went away. I have to be very careful as I'm sure AuntieLeela can attest to, about not consuming gluten, but that reaction is more of an intestinal issue, to use a euphemism . Hope you feel better soon

     
    Old 02-08-2009, 07:35 PM   #8
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    Re: Looking for someone with a similar story

    I have a very similar story. I have Lyme Disease.

    Severe fatigue is the number one symptom for me. And developing new food allergies (not necessarily celiac but wheat intolerance) and gastrointestinal problems is very common with Lyme as well.

    I just recently developed Sjogren's. I think the Lyme making my body flip out.

     
    Old 02-16-2009, 10:44 PM   #9
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    Re: Looking for someone with a similar story

    I was diagnosed with sjogrens about a year ago. The only thing that seems to work for me is 10 mg of prednisone and a series of vitamins daily. Before this regime I was pretty much bed bound. I had to quit my job of 11 years cause I could barely walk. Because of the steroids I've developed diabetes. I have also been diagnosed with uveitis, petichea, rheumatoid arthiritis, and fatigue. Besides the dryness in the eyes and mouth, the worst part is the pressure in my head and eyes. Does anyone have this same problem and can advise?

     
    Old 04-29-2009, 07:18 PM   #10
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    Re: Looking for someone with a similar story

    I have pain and pressure in my head and my right eye. My eye also twitches some. My biggest problem is facial pain and salivary stones.....have you had any stones? I am taking Salogen twice a day...(cant sleep if I take the third dose)

    Last edited by MiaP; 04-29-2009 at 07:19 PM.

     
    Old 04-29-2009, 08:50 PM   #11
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    Re: Looking for someone with a similar story

    Quote:
    Originally Posted by mink11722 View Post
    I was diagnosed with sjogrens about a year ago. The only thing that seems to work for me is 10 mg of prednisone and a series of vitamins daily. Before this regime I was pretty much bed bound. I had to quit my job of 11 years cause I could barely walk. Because of the steroids I've developed diabetes. I have also been diagnosed with uveitis, petichea, rheumatoid arthiritis, and fatigue. Besides the dryness in the eyes and mouth, the worst part is the pressure in my head and eyes. Does anyone have this same problem and can advise?
    Hi There:
    I get head pressure, too. It's definitely worse when the barometer falls. One more reason for me to love sunshine!
    I'm so sorry you've been swacked down so badly with it. I'm having a rough run right now too. Like you, I've been trying various nutritional supplements (why not!) and I'm getting some relief from taking Vitamin D as well as Bromelein. (The latter is an enzyme found in raw pineapple that reduces inflammation. I learned that this seems to really work. I ate an entire pineapple (I don't moderation--that's so dull!) the day before I had my wisdom teeth extracted and I had zero pain and swelling following. This shocked me because EVERYTHING is typically a very big deal with me!)
    The petticheae, etc. sounds like vasculitis. I have that too. Besides the pineapple enzyme, you might be interested in trying these foods/supplements: garlic, sweet peppers, onions, etc. They are all supposed to have healing as well as anti-inflammatory properties. And, they taste good!
    Take good care and I wish you well.

     
    Old 06-13-2009, 07:08 PM   #12
    vocalist1945
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    Re: Looking for someone with a similar story

    For those trying to find anti-inflammatory spices, etc, try good old Cinnamon. Tastes
    great on that morning oatmeal.
    Also try a tbsp. of Apple Cider Vinegar in a glass of cold water. This helps with
    arthritis pain and swelling. Also add garlic tablet to your regimen for inflammation.

     
    Old 07-09-2009, 04:44 AM   #13
    Babs659
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    Re: Looking for someone with a similar story

    Quote:
    Originally Posted by MiaP View Post
    I have pain and pressure in my head and my right eye. My eye also twitches some. My biggest problem is facial pain and salivary stones.....have you had any stones? I am taking Salogen twice a day...(cant sleep if I take the third dose)
    I don't know if I have stones but I do have (on CT scan) "chronic parotid sialadenitis" I get pain in that area now and then, but not too bad. My eye twitches for a few weeks at a time, several times a day, about four or five times a year. Is that what you mean? I am on Evoxac 3x day.

    To update...I am still on Plaquenil and 4 mg Medrol, which has eased the wooziness. I still feel it but it is less severe, and I can function. Is this as good as it gets??

     
    Old 07-14-2009, 05:35 PM   #14
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    Re: Looking for someone with a similar story

    Hi There:
    I have SS too and I am very strict about my diet as I find this makes a HUGE difference. I will talk more about that in a minute, but I also take some nutritional supplements that I believe help me, too. I take 1000 mg of Vitamin D, a B-complex vitamin supplement, a garlic capsule and 2 Bromelain capsules each day. The Bromelain is an enzyme found in fresh pineapple so you can eat it that way too (but I find that hurts my lips and mouth). I did eat a whole pineapple the day prior to having my wisdom teeth out 2 years ago and I had zero pain and zero swelling from my tooth extractions, even though my teeth were impacted. In fact, I had to keep reminding myself for the few days following my extractions that I needed to be careful about what I ate, because my mouth felt fine (I took no pain killers, either). That sold me on the Bromelain. It is an anti-inflammatory, and I think it must really work. The garlic is an anti-viral/anti-bacterial that is supposed to make one's immune system function properly--neither too high or too low (I used to eat raw garlic but I'm a single gal once again and this is a bit daunting to male prospects!). The B supplements are because I don't eat alot of bread--it's too binding--not good for a little girl with hydration issues!
    My diet is also focussed on optimal health. Fat causes the body to release prostaglandins, which irritate nerves. I have peripheral nerve and central nervous system dysfunction from SS, so I don't want inflamed nerves. Consequently, I eat a very low fat diet, vegetarian with the exception of I will eat fish too. Even low fat meats seem to cause problems for me, so I just don't eat them anymore and I've found that this, over time, vastly improved how I felt.
    Some veggies are also good for anti-inflammatory properties. Did you know bell peppers are reputed to do this? I eat a great many of these.
    I rarely have pain anywhere in my body.
    I also exercise pretty much every day. I walk or ride my bicycle to work, and I cycle for recreation as much as possible. I go to my local gym only once per week, (I should get there more I know, but due to time constraints, it just doesn't happen) and this helps keep my muscles strong, which in turn supports the other systems of my body.
    I also am hypersensitive to almost everything, so I don't consume alcohol (I can get drunk on 3 sips of wine!) nor do I take drugs or smoke.
    I am on no medication for SS--no Plaquenil or anything else.
    This is all lifestyle, I know. And, it took a while to get results. But, I do believe they came in time, and so I just keep doing these things.
    I don't know if this lifestyle would work for anyone else, but it worked for me. I can easily ride my bicycle 100 kilometers in a day, and go home and do housework afterwards, and rarely not feel okay after. I was so sick at one point a few years ago that I lost use of my legs and I was wrongly diagnosed with multiple sclerosis. So, I'll take my current abilities now and be much happier, thank-you!
    This is just my story. I hope by sharing it with you, I have offered you some ideas and hope. Take good care of yourself and I wish you well.

     
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