ANA positive for Lupus

Hi davidvictordavid,

I have been away from this support group for a few weeks and am checking back in.

For constipation on a liquid diet, consider slippery elm inner bark powder. It supports the gut mucosa and helps stool slide along. I helps me a lot. I add 1/8 teaspoon to almost everything I consume. If stool gets too lose, use less often.

If she can tolerate some chia seed powder (I can only take 1/2 teaspoon a day) that could also help with constipation. Spinach powder and other vegetable powders could help with her immune system and provide fiber. You'll have to experiment and see what could help.

Lastly, if she can eat/drink thin hot cereal, try LiveKuna Green Plantain Flour. It is easy to digest (green, so no sugar) and has some fiber. You could try some organic stevia (100%) drops for sweetener (if sugar is off limits) or the sweetness/flavor of any milk can be enough.

LiveKuna is the best brand. Others brands I have tried were icky. I also add some liquid egg whites to thicken it up and add protein. I don't know if that would work for your wife. Protein is good for healing the gut and egg white protein is easy to digest.

By the way, the B12 is take is Pure encapsulations Adenosyl/Hydroxy B12. It is gentle and I just take 2 drops in a bit of water a day with the Methlyfolate mentioned in my earlier post.

If you Google Folate (or MethylFolate, I cannot remember), there is some supposition in the research literature that it could help with lupus.

As far as Sjogrens goes, I do not have much to add other than I may be inching toward it with dry eyes and dry mouth and my eyes increasing sensitivity to lights. For the first two symptoms a specialist said to drink water (just liquid, not enough). And I wear sunglasses more often for the light sensitivity.

Hang in there. You are a loving husband looking after her as well as you are doing and I wish your wife better times ahead.

Sooo I literally feel like I just wrote that myself. I hope this thread isnt old cuz I am newly diagnosed and just mind blown at all of this. ~ Jodi

@gammelljodi74 Hi, Jodi, I’m so glad you found this site! And jumped right in! No, the discussion isn’t old. Many discussions were started months or years ago, but members have jumped right in and brought them up-to-date. So you have lupus? There are many discussions on lupus, which you may want to look at. You can get very involved on MCC so get started!

It’s best to go to a Rheumatologist to confirm Lupus. I hope you find the right answers.

I’ll tell you a bit of what I’ve been told. Which I always got mixed stories and never got a straight story. The blood test alone don’t provide a diagnosis and there is a check list of symptoms that doctors go by. Lupus doesn’t always show up on a blood test. One of my blood test was a positive once and I was also told that both had to be positive. Supposedly 4 of 5 I’ve meet and still no diagnoses. I also have a higher risk for Lupus because of my mother has lupus, I have an autoimmune gene, I have autoimmune antibodies that showed up on a thyroid test and autoimmune runs in our family.

Stay on top and make sure all your questions get answered by your doctor that has a specialty in autoimmune disorders like lupus.

Also, lupus is treatable. It’s something you’ll have for the rest of your life, but nothing to be scared about. My mother is 76 with lupus.

I have had Lupus ANA positive test at least 5 times. I was told once when the numbers go up they will never come down. The test were done many years apart and with many different readings. I had a Cleveland C. Rheumatologist tell me to forget i ever saw the results and live my life . They do not have a cure. so unless something really affected me, just keep living life. They are odd and many do not think outside the bax. . My cousin was with me one time and she said, " I couldn't believe you didn't respond back. " It gets so frustrating to have so many odd things happen to one self, and when you seek help you meet the strangest medical people. Frustration doesn't begin to cover what you feel. Keep your faith in God and remember miracles do happen .

@hunterhadley03 hello, did you end up getting answers?

I was on here looking up lupus because I think I might have a mild version of it and found your thread.

I wanted to mentioned that a lot of your symptoms are similar to what I initially had (minus the low blood count, mine was high, and the blue fingers, which is typically a symptom of a connective tissue disease from what I’ve read)

I was initially diagnosed with celiac disease. Did they run the TGA test for you? I didn’t seem to see that mentioned in your tests above.

Autoimmune diseases typically run in pairs. Which is why I think I might have a mild version of lupus and am always researching.

That being said reading what you said above my thoughts for you is you might benefit from a gluten free diet. Multiple autoimmune disease symptoms subside on a gluten free diet.

It was wild to me when I finally got a diagnosis that after three days of going gluten free I was confident they had finally figured out what my issue was.

Good luck! Don’t be scared! (It’s better to have answers and a solution than to be sick all the time). You’ll get to the bottom of it and once you do a lot of your symptoms should go away!

@binkcheeks
Living with lupus, celiac disease, psoriasis, and adrenal insufficiency means you never quite know which condition to watch out for first.
Often, they trigger one another or flare simultaneously. For this reason, I summarized the main categories of autoimmune diseases.
https://swaresearch.blogspot.com/2023/09/definition-of-autoimmune-disease.html

@hunterhadley03 Lupus diagnosis cannot be made solely with anti-nuclear antibodies. Clinical and laboratory correlation is necessary

@ercan 🙂

@ercan
You are correct.
Hematology should assess for lupus using ELISA-based testing alongside screening for antiphospholipid syndrome (APS).

Emerging evidence suggests potential underdiagnosis; see the referenced scientific paper.

Cardiovascular risk factor control in antiphospholipid syndrome, and differences between primary and systemic lupus erythematosus-related antiphospholipid syndrome (SURF-SLE and APS project): a cross-sectional study of 1003 individuals from 11 countries
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(25)00257-7/abstract