Does this sound like Sjorgens? I do NOT have dry eyes nor a dry mouth. Is that common?

[WK1010]

Hello everyone. I'm a 19 year old male. Not too long ago my blood test showed RF latex test > 450, which I have read indicates advanced disease. I've read a bit about rheumatoid arthritis and diseases associated with rheumatoid factor, but none, I think, match how I'm feeling. I don't think I have RA, as I don't really complain of joint pain. IgM was also 2.8, slightly elevated. What's going on? What disease could cause this? Celiac disease blood tests were negative and the doctor think celiac is unlikely. I was referred to a gastrologist and now have to wait months for the appointment while suffering from:

- Fatigue

- Daytime sleepiness

- Memory issues

- Concentration issues

- Never feeling awake, can't think straight (brain fog)

- General muscle aches and weakness

- Excessive flatulence (near constant!)

- Changes in bowel movement (bowel movement every other three days, or once each day but incomplete, much straining. Stools are very fatty / shiny and hard to flush)

- Moderate numbness and tingling in hands and feet that I feel all the time.

- Difficulty swallowing (mucus stuck in throat, food getting stuck in throat, need water to flush down. I do have acid reflux, but am being treated with pantoprazol.

- Loss of appetite. I only eat because I know I have to. I eat quite alot, but don't really feel like eating.

Main bothersome symptomes are: Fatigue, daytime sleepiness and flatulence, because I've had them for about 5 years, and these symptoms are getting worse each year.

[HollyHeski]

Hi, it takes a long time to get a diagnoses of Ss. For me dry eyes, mouth & joint pain was what led me to a Rhemy.

You can have wheat intolerance & not the full blown celiac desease. Your symptoms to me seem to relate to your diet-try going wheat free & possible lactose free, maybe just for 2-4 weeks to see if your symptoms improve. For the reflux, try small meals little & often.

It can be trial & error for ages until we feel better

See if you can get your thyroid, B12, Vit D tested aswell.

Hope you do get some answers soon.

[WK1010 in reply to HollyHeski]

I've been tested for wheat allergy. But if you mean I could have non celiac gluten sensitivity, then I believe this is not the cause because the blood tests clearly indicate some autoimmune reaction. I've had B12, thyroid and vitamins and mineral tested multiple times. All values are normal and within good range (neither low nor high normal).

[HollyHeski in reply to WK1010]

Hi, I had many of the same symptons. Wheat & lactose intollerance does not show on any blood tests. Like you all my bloods came back normal - it was not until I removed items from my diet that I found what I was intollerant to. This also does not mean life time intollerance just at that time. Now every now and then I have a flare up so I go thru removing wheat & lactose from my diet. It may not apply to you but worth trying? They also say there is a link between leaking inflammatory gut & autoimmune problems. If after trying no change you can still tell your consultant youve done this, may save time in long run, as they usually get you do this test first anyway.

Hopefully you will get a diagnoses soon.

[WK1010 in reply to HollyHeski]

Thanks for your reply. My doctor told me to go off wheat and dairy for 2 months. I'm over one week into it and at first it helped a bit, but the symptoms are now the same as before, which is confusing. I think I might stop before two months if there doesn't seem to be an effect anymore.

[Hidden]

Your symptoms could relate to many autoimmune diseases and conditions - that's the problem. I had similar issues at your age but thought it was just life - I have had a lot of non specific health problems all through my life.

Now I'm 54 and last year was diagnosed with Sjogrens having previously been misdiagnosed with RA five years earlier. It's just so hard to know where all this will go. Do you know if you have raised inflammation in your blood - CRP and ESR? Have you had your thyroid and vitamin / minerals checked - especially Vit D and B12?

[WK1010 in reply to Hidden]

I have not CRP and ESR I think (what are those tests?). I know these symptoms aren't very specific, but I hoped my age, my gender and my test results could give a clue. Thyroid hormones, vitamins and minerals are normal and within good range.

[Hidden in reply to WK1010]

They are both non-specific markers that detect inflammation in the blood. If they are high you are much more likely to have autoimmunity - unless they are taken when you have an infection. They are usually very high for people with Sjogrens although there are always exceptions of course.

[WK1010 in reply to Hidden]

I had CRP and ESR taken yesterday, and they're both fine. This is really strange because everything is fine except RF and IgM. CRP was <5 and ESR < 3. This is also really confusing because on one hand it seems like an immune thing because of RF and IgM, but on the other hand everything else is normal. I have retested RF and IgM and am waiting for the result of those.

[Hidden in reply to WK1010]

Some people have a high RF but no RA or other connective tissue diseases but 450 is quite high if your lab normal is 0-20. And some people also have normal inflammation markers despite having RA or Lupus etc. I'm not sure about Sjögren's as on the Arthritis Research UK page it says that many with this disease will have very high ESR/PV and CRP because of high antibodies and thicker blood. I think you should ask for the more specific antibodies to be tested for Lupus, RA and Sjögren's - but you may have to see a rheumatolgist for this I'm not sure.

[Miamigirl305]

I have sjorgens and had the same symptoms you did. I went to my primary care doctor and he said it was just stress. I eventually ended up in the hospital where they did an ANA test which was positive, however, the anitbodies for SJ were negative. After that, I pushed my doctor to order a lip biopsy which confirmed sjorgens. Your eyes might be more dry than you realize, the same could be true of your mouth. Sometimes we get so used to our bodies, things start to feel normal. I think it's worth checking it out. Wish you all the best.

[Miamigirl305]

P.S. Sjorgens is related to neuropathy which may be why you feel numbness and tingling in your hands. You may want to see a neurologist and ask them to conduct a nerve test or a skin biopsy to investigate whether you have neuropathy. Eating an alkaline diet and Phosphatidylcholine helped me with my brain fog, you may want to try that.