Discussions By Condition: I cannot get a diagnosis.

Sjogrens Syndrome

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • March 5, 2007
  • 05:38 PM

Hi, A few years ago, I went to the doctor because I had severe joint pain. The doctor ran some blood tests and said I possible had Rheumatoid Arthritis. This was surprising since I was only 42 years old at the time. A few years before that I had been diagnosed with IBS which has since resolved itself by diet and exercise. This becomes relevent later. After a few more doctor visits and some blood tests, the doctor said I had gout because my uric acid levels were slightly elevated. He then sent me to a Rheumatologist. The Rheumatologist then said I had Sjogrens Syndrome which caused the other symptoms. This was the only thing that has made sense since. I told the Rheumatologist that I still had some urinary problems since the time I was diagnosed with IBS that haven't went away. He referred me to a Urologist. After about six visits to the urologist, his best GUESS was that I has Interstitial Cystitis with possible kidney problems. He sent me to a Nephrologist and a Immuneologist/Allergist. The Nephrologist sent me back to the Urologist and also referred me to a Endocrineologist. The Immuneoologist did several allergin tests which made me have severe cold sypmtoms for three days and a bout of polyuria.

My sypmtoms include intermittent frequent urination (every 20 minutes), urinary urgency and nocturia. They usually occur after waking up and last for about three hours. By that time, I am dehydrated and the frequency subsides to about every two hours. I then only drink small amounts of water to keep me hydrated and prevent another bout. There are times when everything runs normal and the symtoms do not present themselves. It appears my body likes to stay in a slightly dehydrated state. Since the doctors don't appear to want to help me or can't, I find myself trying to diagnose my own medical problems which I know I should be doing.

Is there anyone that can help out there? Maybe someone has Sjogrens Syndrome with similar symptoms and has already been through all of this. I have a job that I cannot be running to the bathroom all the time. It's ruining my career and it's embarrassing.

Thanks,
Steinman1

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5 Replies:

  • The allergy tests are looking for an Immunoglobulin E (IgE) reaction but the way you describe being sick for three days afterwards sounds like an IgG allergy reaction (perhaps the #1 source for misdiagnosis!) The IgG allergy reaction to wheat has been linked to Sjorgen's, IBS, and kidney/bladder problems... The IgG allergies to non-wheat food haven't really been studied, but do you think it is a huge stretch to imagine all IgG food allergies are related and result in similar effects? What dietary changes have you used to control the IBS? If you are using a low fibre diet you may have eliminated *most* of the common allergens already and this would explain why the IBS has been primarily resolved without curing 100% of the other related issues.. Residual amounts of the offending chemical, however, can cause other systematic symptoms to persist and even grow worse over time (wheat, milk, soy, corn, tomato, citrus, refined sugar are the most common sources of IgE -and- IgG allergy). If you show a "small" allergic IgE reaction according to the common allergy tests, you may have a "major" IgG intolerance to that item that isn't being seen/taken seriously.
    Azaral 152 Replies Flag this Response
  • Hi, in response to you reply. I appreciate your response. To alleviate my IBS symptoms, I quit drinking alcohol, stopped eating spicy foods, stopped eating too much at one time, began to exercise more often, cut back on products with caffiene. Although, I have recently stopped all caffeine related products because it appear to worsen my bladder symptoms. My allergy tests came back with reactions to grasses, pork, peanuts, soy, and shrimp. He put me on Allegra and told me to stop those foods for a month and see what happens. I wish it was that easy but we will see.Thanks,Mark
    Anonymous 42,789 Replies Flag this Response
  • Grasses is pretty general - that may or may not include some grain cereals. Take a look at Celiac disease - it doesn't completely apply because it sounds like soy is your primary trigger but the general auto-immune response is about the same. Like I said, IgG auto-immune disorders to non-wheat foods are not studied much beyond statistical guess-work and anecdotal evidence of people who have become healthy. The important thing is to avoid ALL trace amounts of soy including additives, preservatives, and flavorings containing it. One month may or may not be enough time to feel better - in my experience one month is barely long enough to recognize what ingredients contain the allergen (ie: hydrolized vegetable protein is a code word for soy OR wheat, modified food starch could be..well anything really.. only asking the manufacturer can give a definitive answer and often times they will just say "We use whatever is cheapest to acquire that day/week/month"). Sure, it is a nice solution in that it works to make many people healthy without drugs and/or surgery, but it is not so easy as you might imagine. You may even find yourself feeling worse for a while if your body has developed an addiction to the exorphins that can be derived from soy protein. Recovery can be an agonizing process that typically peaks 9-12 months after allergy elimination. Soy has found its way into most manufactured foods in one form or another and as you really research it you will realize taking a societal staple completely out of your diet is not such an easy task. Allergies can be triggered by extremely minor quantities, so it is not like 95% adherence is good enough. Since an IgG allergy takes 3-7 days to fully resolve, one accidental crumb of soy per week could leave you feeling about the same as you did before on a constant basis. 30% of Celiac patients are not as diet compliant as they think they are (based on follow-up blood work) and I imagine this number would be at least that high for someone trying to eliminate soy. It does not surprise me one bit that RA, Sjorgen's, and IBS are coinciding with a soy allergy! I am surprised however that your doctors managed to connect those dots. Now all you have to do is follow their advice - just be extremely watchful and things should get better!
    Azaral 152 Replies Flag this Response
  • In my case after exposure to West Nile Virus and Aseptic Meningitis, Dry Eye syndrome emerged, bladder issues, but in my case is that I was diagnosed with Neurigenic Bladder, and the Army Doctor advised me to see a Rheumatologyst for Sjogren's, so here we are let's see what happens!Grasses is pretty general - that may or may not include some grain cereals. Take a look at Celiac disease - it doesn't completely apply because it sounds like soy is your primary trigger but the general auto-immune response is about the same. Like I said, IgG auto-immune disorders to non-wheat foods are not studied much beyond statistical guess-work and anecdotal evidence of people who have become healthy. The important thing is to avoid ALL trace amounts of soy including additives, preservatives, and flavorings containing it. One month may or may not be enough time to feel better - in my experience one month is barely long enough to recognize what ingredients contain the allergen (ie: hydrolized vegetable protein is a code word for soy OR wheat, modified food starch could be..well anything really.. only asking the manufacturer can give a definitive answer and often times they will just say "We use whatever is cheapest to acquire that day/week/month"). Sure, it is a nice solution in that it works to make many people healthy without drugs and/or surgery, but it is not so easy as you might imagine. You may even find yourself feeling worse for a while if your body has developed an addiction to the exorphins that can be derived from soy protein. Recovery can be an agonizing process that typically peaks 9-12 months after allergy elimination. Soy has found its way into most manufactured foods in one form or another and as you really research it you will realize taking a societal staple completely out of your diet is not such an easy task. Allergies can be triggered by extremely minor quantities, so it is not like 95% adherence is good enough. Since an IgG allergy takes 3-7 days to fully resolve, one accidental crumb of soy per week could leave you feeling about the same as you did before on a constant basis. 30% of Celiac patients are not as diet compliant as they think they are (based on follow-up blood work) and I imagine this number would be at least that high for someone trying to eliminate soy. It does not surprise me one bit that RA, Sjorgen's, and IBS are coinciding with a soy allergy! I am surprised however that your doctors managed to connect those dots. Now all you have to do is follow their advice - just be extremely watchful and things should get better!
    Anonymous 42,789 Replies
    • November 10, 2009
    • 10:01 PM
    • 0
    Flag this Response
  • I have Sjogren's Syndrome. I was diagnosed after seven weeks of taking seven vials of blood each week. They diagnose it by finding two factors in your blood called SSA and SSB. They confirm the diagnosis by a "dry eye test".... it causes dry eyes and dry mouth (severe. I would wake up in the morning with my tongue almost stuck to the roof of my mouth because of dryness). Sjogren's can lead to Rheumatoid Arthritis, or vice-versa.It is an autoimmune disorder causing dryness and inflammation throughout the body.You have to take an immunosuppressant called Plaquenil, a wonderful drug with no side effects, to stop your body from attacking itself. I had to take mild Prednisone for three months until the Plaquenil took effect. I had all lymph nodes enlarged and spilling protein into my urine, so at first my dr. thought I had bone marrow cancer (actually a blood cancer called Multiple Myeloma),but the hematologist found the SS.I have weakened bronchials and got serious bronchitis and pneumonia for years, but since the Plaquenil, I have not had so much as a sniffle. . If you start to get Reeumatoid Arthritis, they might put you on a drug called Methytrixate?? but they have to monitor your liver every two weeks for awhile to see if it is making your liver work too hard. Don't hesitate to take the Plaquenil if you have Sjogren's... 200 mg twice a day, because it helps keep away the R.Arth.There is lots to read on line about SS - get onto the Paquenil asap.Judy G.
    Anonymous 42,789 Replies
    • February 27, 2010
    • 00:40 AM
    • 0
    Flag this Response
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