New worries

[LookingforAnswers15]

Hi all, I have been away from the forum for some time. Since I knew I could not get any more tests done or see doctors until this next week, I tried avoiding thinking about my health problems as much as possible. Since I began working, that has helped keep my mind away and it was nice not to think about it. However, I would lie if I said that I was not thinking about it, but just not as much as I used to. I know all my test results by heart so I do pay attention to how I feel. Since the last time, I gained some weight. It was my goal (although I looked ok with the weight I had) because I was hoping it would help stop my hair loss. I am losing less hair but I am not sure if this is as result of this or seasonal changes. Unfortunately, for the last month or so, I have eaten some  gluten-free rice treats with chocolate. Prior to that I was just eating meat, fruits, veggies, and rice, cooking with an olive oil. I went to get my blood test yesterday and I am scared. In august, an MRI of my neck revealed enlarged lymph nodes in my neck and one in my shoulder. I do occasionally have a pain around my armpit and I am not sure if it is from that. I went to the specialist and he said nothing to worry about but it has always been on my mind. These are the results that worry me:

lymph% 50,4 (range 20-46)

neut% 39,1 (range 44-72)

neut# 1,80 (range 2,06-6,49)

They also found bacteria in my urine. My cholesterol is 5,2 (0,0-5,2). Proteins 81,0 (range 66,0-81,0).

WBC RBC -ok

It has been cold in my office but it seems that it is much colder there to me than to other people who come there. 

Not sure what to think but Dr. Google freaked me out yesterday. Please offer any advice you might have. I am hoping to see a rheumatologist next week since I had to weight over 2 months for this appointment. Thank you.

Lab just called me. They originally forgot to run Rheumatoid Factor test so they did later. It came back POSITIVE. I am just crying now because all of these results can be related to Rheumatoid arthritis, lupus, and other scary diseases. It seems like I have something else apart from celiac. As much as I try to calm myself all I see is more tests, more hospital, questionable or insufficient treatment if needed. The country I am in has a horrible health care and God forbid it is RA, I am screwed because I read in the newspapers how they do not provide good care/treatment to these patients.  

[DebbieAnnC]

All of these other diseases can be related to food intolerances. Give the diet time to work. Will they check you for deficiencies?

[LookingforAnswers15]

It has been almost 2 years since I have been gluten-free. I think it has to be something else at this point. No one would be happier than me to be wrong. I really do not know what they will do on Monday. I will ask them to check Vitamin B and D at least. Most of the tests that have been done were done because i kept requesting them or because I went to a private lab and paid for them out of pocket. No one is looking at me carefully. One immunologist that I thought would help me in the end did not. I got the referral for a rheumatologist because I insisted I had joint pain and was still not feeling well. I am just so scared what the future holds in store for me. I cannot believe how much life has changed in last few years. Thank you for responding.

[ironictruth]

This breaks my heart for you. I know how awful it is to have symptoms and no answers. I find I need to take breaks to alleviate my anxiety for a bit because it can produce more unrelated symptoms. 

Please do nice things for yourself. A bath with a glass of wine, book or candle. Save up some cash and spend it on yourself. Go feed some ducks with a friend. 

Plug away, one test at a time until you get your answer.

[Gemini]

I have and always have had positive rheumatoid factor and it is related to the fact I have Sjogren's.  I don't even give it a second thought. I think I told you once before that you will never have normal blood results with autoimmune disease. If you have multiples, even more so.  It can also be difficult to figure out what you may have as many of the symptoms overlap.  Is your health getting worse or are you worried because of the test results alone?  If you are continuing to improve on the gluten-free diet and have not developed any new symptoms that have not gone away, then there is no reason to be this worried.  Even if you have new symptoms, worrying will only make you crazy. You have to find a balance where you can live your life without always worrying about what might happen. I don't mean to downplay your worries but stress will make things worse so you have to learn to chill a bit.  Please enjoy your occasional gluten-free treats also without all that guilt!

I hope the Rheumy can answer your questions and help you find a little peace!

[cyclinglady]

26 minutes ago, Gemini said:

I have and always have had positive rheumatoid factor and it is related to the fact I have Sjogren's.  I don't even give it a second thought. I think I told you once before that you will never have normal blood results with autoimmune disease. If you have multiples, even more so.  It can also be difficult to figure out what you may have as many of the symptoms overlap.  Is your health getting worse or are you worried because of the test results alone?  If you are continuing to improve on the gluten-free diet and have not developed any new symptoms that have not gone away, then there is no reason to be this worried.  Even if you have new symptoms, worrying will only make you crazy. You have to find a balance where you can live your life without always worrying about what might happen. I don't mean to downplay your worries but stress will make things worse so you have to learn to chill a bit.  Please enjoy your occasional gluten-free treats also without all that guilt!

I hope the Rheumy can answer your questions and help you find a little peace!

I love Gemini's no nonsense advice!  As usual, it is excellent.

Here's my two cents.  My grandma had RA and Lupus, my mom has Fibromyalgia and Graves, my MIL had Multiple Sclerosis.  Mom is still alive and kicking in her seventies.  Grandma and my MIL lived into their seventies too and that was long before any good medical support.  If I had known about celiac disease, I would have had them tested.  I'm sure that might have extended their lives.  

In keeping with family tradition, I have Hashi's and celiac disease and Diabetes to boot (suspect Type 2).  Will I get another AI disorder?  Who knows?  I just have to take each day as it comes and enjoy it to the fullest.  

Listen to Gemini and find ways to reduce your stress.  I spend a nice morning walking on trails with my old dog.  I shopped with my daughter who bought her first pair of platform sandals.  Memories of my old platforms back in the 70's came rushing back.  Guess what?  I bought a pair (not so high).  They'll look sweet with boot cut jeans (I can not and will not wear skinny jeans like my kid), and I'll get to be a little taller.  I promised my kid not to wear them with individual toe,  multi-color, socks like I did when I was in Jr. High!  

Hugs!

[LookingforAnswers15]

Thank you all for your support. I agree that getting stressed out can just cause more symptoms. I am hoping to see a rheumatologist tomorrow. Any specific questions or tests to ask for? 

[cristiana]

Great words of advice there.  I have had my own fair share of weird blood test results but now try to keep in mind Gemini's wise words about autoimmune diseases affecting the figures, advice she has given me before too.   I had elevated protein for a while and worried myself sick.  It wasn't until I was bold enough to raise this matter direct with my gastroenteroligist that he said, 'Oh, we see this with celiac disease from time to time, it isn't that common, but it happens'.   So I would say one question is could celiac disease account for any of these blood results? 

Also, remember sometimes these weird blood results can be temporary.  A relative of mine had a whole raft of tests with a rheumatologist  for at times debilitating joint pain and after months of blood tests which showed inflammation, and scans -  and goodness knows what - the pain has gone and the medics think it might have been a virus.    We were all terribly concerned but it came to nothing in the end.   

 

[Gemini]

You are so right, Christiana!  That stress buggar can make things worse temporarily.  My protein level was ever so slightly elevated again when tested in January and it had been behaving itself for awhile.  But with 2 deaths in the family in the past couple of years and additional family members diagnosed with diabetes and celiac, am I surprised?  No..........annoyed but not surprised.  Everyone has their low moments but you just have to soldier on and try not to let it derail you.  You just do the best that you can.

 

[Gemini]

3 hours ago, LookingforAnswers15 said:

Thank you all for your support. I agree that getting stressed out can just cause more symptoms. I am hoping to see a rheumatologist tomorrow. Any specific questions or tests to ask for? 

I would ask for testing for related conditions that occur most frequently with Celiac.  I think Rheumy's usually have a standard battery of blood work they might do and then they go from there.  Good luck!

[LookingforAnswers15]

Thanks Gemini. The doctor ordered some rheum. tests.