? ANA test and SED RATE

Well the tests were done because of some symtoms of CREST.

Right.  Mostly the esophagus and swallowing symptoms?  It does sound concerning. Has your doctor said anything yet?  Localized schleroderma?  Do you have any other signs of CREST?  How are you healing from the biopsy? The high SED rate is concerning especially since this would mean that there is active inflammation occurring right now. Do you have any arthritis or other body signs of inflammation?

Sorry--I meant Scleroderma.  

I haven't talked to her yet, she was going to set up a referral to a rheumatologist to go over it.  My sister thinks the A may just stant for antibodies.

I do have some joint pain and tenderness similar to fibromyalgia and also carpal tunnel and hives.

I just read the biopsy results that you posted a few hours ago--sorry that I seem to be reading these all out of order. Glad that you are now getting to a more healed place. I am really glad that you insisted on the bloodwork.  I think that they will have more answers for you to explain what's been happening with your joint and muscle pain, hives, and throat symptoms, and 

diarrhea.  They may need to do further testing to narrow it down.  There are more specific tests for some of the other autoimmune disorders, like lupus and chronic urticaria. My understanding of CREST is that it takes positive anticentrome antibodies and the symptoms related to CREST.  Do you have any other CREST symptoms besides the throat (I think that you mentioned before no Raynaud's)?  

Definitely sounds like you are on the right path diagnostically--so glad because I don't think that delays are good.  So sorry that this seems to confirm your suspicions.  

Thanks, yes biopsies are doing better now.

I dont know how long ill have to wait to have other testing done for specific dx.

I have some issues in my hands but no white or blue discoloring. And the gurd. But who knows if any of it is related. 

My chronic urticaria is brought on by contact and preasure to the skin. Never had blood work for that.

I hope I dont have lupus or scleroderma. There are so many other things that cause positive ANA results. I wish she did a specific test for CREST. She is just going ti leave the rest up to the rheumatologist.

I hope that you don't have some of the more serious autoimmune issues either!  I think the trip to the rheumatologist definitely will tell more--hopefully the doctor will run a number of tests to try and pin it down.

 The frustrating thing about these autoimmune disorders that I've found is that the testing is scattered all around different specialties.  There needs to be ONE autoimmune specialist. For example, the rheumatologist won't usually test for thyroid antibodies (other specialists will) or for chronic urticaria (an allergist will), for example.  Those problems and a lot of others are not part of that specialty. So, that's important to keep in mind if they haven't discovered what's causing the hives or any other symptoms that aren't the "part of the elephant" that a rheumatologist looks at.   

There are a lot of things that can cause high ANA, as you indicate.  It is nonspecific and even thyroid antibodies can elevate it.  More concerning is the high SED rate--I can guess from a high SED rate that you aren't feeling well.  Neither result is specific and additional testing is needed (and soon, I hope!).  

Will you have to wait very long for the rheumatologist appointment?  

 

 

So far I have been lucky to get apts quickly so lets hope thats the case this time. 

Your right, they need autoimmune specialists.

I definately have felt better in my days but could also be worse. Ive dealt with body pain and fatigue for so ling its become normal. But like today the fatigue and muscle pain is worse and a reminder that its not normal.

So sad that you've dealt with this for so long!  Makes me a little mad too that they didn't investigate this sooner!  I hope that they pin it down soon.  Meanwhile, anything that you can do to make sure that you are taking the best possible care of your self would be good (e.g., diet, lowered stress, comfortable exercise, pampering, etc.)!  

Well I do blame myself a bit. I was referred years ago but didn't have insurance or money to pay. I also got tired of bringing up pain issues because it always came down to them telling me to get better excersize and lose weight. I stopped bringing up fibromyalgia because it was always brushed aside. Eventually I stopped bringing up anything that was not visible due to frustration.

Well, it sounds like they weren't tracking the potential seriousness of this with you and urging you to follow-up on the referral.  Getting better exercise and losing weight sound like standard advice, so how could you have known  what the possiblities were?  It seems like it was their job to make the more serious possibilities clear and not to underplay it by giving standard advice!  We can't know what it all means--that's why we see doctors!

Hi Shari--I was just reading about CREST and scleroderma on wiki. It is scary, although at least the limited scleroderma (CREST) is significantly less severe than the diffuse. There was one quote that I noted though and wondered if you've had your vitamin D levels checked.  

"Vitamin D is also implicated in the pathophysiology of the disease, for one an inverse correlation between plasma levels of vitamin D and scleroderma severity has been noted and vitamin D is known to play a crucial role in regulating (usually suppressing) the actions of the immune system.[19]"

Since I have the predictive antibodies for CREST, I am going to be taking extra D.  I just had it tested and my blood levels were at 60, I think (I haven't got a copy yet of the results, but the practitioner told me).  With autoimmune disease, it's sometimes recommended to get it up higher to 70 or 80. 

Do you know your levels?  Sounds like it might be important.  --Suzanne 

Oh it sounds aweful. Really hoping thats not what is going on. I have not had my D levels checked but my whole familys is low and a dr told me I should be taking it. I have a hard time remembering to take my vitamins. I have an alarm set for my husbands pills I really should take mine then too . I really need to get on track with my eating. Its still been hard to completely give up certain things. I read about being gluten free being good for autoimmune but trying to do that with picky eaters in the house. I need to learn to eat separate food I guess.

I know it's hard to change our diets, especially under stress when it might be one of the few comforts that we have!  

I have seen charts that track autoimmune illnesses and cancer based on latitude, with Vitamin D being the presumed mediator.  The less sunlight people get, the higher the rates of a lot of diseases!  If you do nothing else, that might be the most important one!  Lots of info out there on this.  Second, would be to consider food as medicine at this point.  I would do almost anything not to keep developing autoimmune illnesses--and I have a number of them.  Because of regular testing, I also have seen a number of antibodies actually disappear with my diet changes (most recently the Smith antibodies associated with lupus went away--yay!).  I still have the CREST antibodies though, which tell me that I need to figure out even better how to change course!  I'm considering what else I need to do.  

I know that you must be feeling scared because looking at the problems associated with CREST scares me big time!  I would encourage you to take that fear and put it into action to do whatever you can to be proactive and resist that fate.  

The first steps that I would take would be to take my vitamins, especially enough vitamin D--and get tested after taking for a few months to make sure it's in a good range.  Then I would add fermented foods and or probiotics to help heal my gut (a part of autoimmunity). Also I would clean up diet by eating only whole, unprocessed foods (and maybe adding healing foods like salmon, liver, and bone broth).  Finally, I'd look at exercise, and stress levels.  I am currently looking at how self-critical I can be and considering what that might be doing for my body's attack on itself.  

I hope that I am not being too advisory here, Shari--but now might be the time to take action to give your body every chance you can.  

All my best,

Suzanne

Oh you are so right, I have all of that on my mind. I know I'm just at the beginning of eating healthier and need to kick myself into high gear. I have managed to lower my cholesterol a bit so I know I have done a bit better.  But now with this whole autoimmune thing and learning about the foods to get rid of im going to need a lot bigger changes.

I'm doing the autoimmune paleo diet, and I know that's a lot of foods to cut out.  What are you thinking about trying?  That's great that you've already seen improvements with the changes you've made.  I think that our body often tells us in many ways when it's not happy.  I've seen a lot of changes in my bloodwork too, like my inflammation marker C-reactive protein is in a good range now after years of being somewhat elevated.  

I looked at that Paleo diet and im not sure if I could stick to it 100 percent but im hoping I can at least cut more sugar and gluten out. I need to work on my stress too. Its hard for me having kids still in school and one son health issues along with my husbands. Getting things figured out for them has always come first. I need to out more priority on my self.

Sugar and gluten is a great place to start.  I just listened to a podcast on Hashimoto's and the expert recommended starting by removing sugar, gluten, and also dairy (hard, I know!) and soy.  I've been single parenting and raising two boys (now 18 and 22), and struggling with the stresses of family life as well.  It's sure not easy to take care of ourselves and our family's, too!  Also, have to keep remembering that it won't do them any good for us to be sick, right?