Food and Flare-Ups, Clinical Significance of ANA

Hi everyone,

I am curious about certain foods and their connection to flare-ups. I have found that gluten, soy, dairy, and refined sugars cause a lot of problems for me. Is it common for certain foods to make symptoms worse? What foods do you find help with symptoms?

My second question is about ANA. I have been spending time researching the past couple of weeks, and have read several articles on Google saying that a positive ANA often doesn’t turn into an autoimmune disease, but rather the diagnosis ends up being something like fibromyalgia as a positive ANA can occur with that disease. My ANAs (homogeneous) have been the following: 1:640, 1:1280, 1:1280, 1:640. I am currently on low dose naltrexone and am newly started on hydroxychloroquine. No other blood tests have come back abnormal except an antibody for Sjogren’s barley positive once and I believe protein has shown in urine before. Symptoms include hand tremors, fatigue, neurological pain in limbs and face (numbness, tingling, pins and needles, etc), headaches, a sensation of itchiness with no skin changes, joint pain, insomnia (made worse by achy legs and nerve pain), dry eyes, occasional poor balance, morning stiffness, poor fine motor skills, always feeling too hot or too cold, intermittent fevers (low grade), arms and legs feel heavy, poor physical stamina, and a heart rate that can often be too slow. My joints often feel stiff but when they have been tested through passive range of motion in the past I have been told a few of them of them are “too loose”. My flare-up patterns are most likely to last a few hours at a time but can last a few weeks; however symptoms are always present at a mild level. I’m not sure I would describe them as debilitating due to pain levels, but they do make it hard to think and function due to never truly going away. Triggers include certain foods, weather changes, sitting for too long, being too active (it’s always a balance), stress, menstrual cycle etc. Mom is diagnosed with Hashimotos, thyroid issues are strong on both sides of the family, aunt on Mom’s side diagnosed with Lupus, first cousin type 1 diabetes, another aunt fibromyalgia etc (not sure how much that matters). I do have a history of severe anxiety and depression, however, all medications to “help” with that were making me extremely sick and I was pulled off all. I have a long history of physical problems being blamed on psychiatric factors. All of those diagnoses were ultimately removed but I am autistic. I’m trying to understand as much as possible, and these are my questions:

1. How often does someone like me, even with a high positive ANA, ultimately get diagnosed with a condition like fibromyalgia or ME/CFS due to no other blood tests presenting positive? (ANA first tested December of 2020).

2. I’ve heard people talk about autoimmune diseases “simmering” under the surface, perhaps in the beginning stages. Is there a good way for me to try and tell now if it’s something like or something more like Fibro?

3. I would like to talk to my primary care doctor soon about our next steps. Would it be best to continue to wait to see if changes in symptoms occur, or do what has been suggested to me in the past and look into a research hospital?

4. If you relate to any part of my story, can you share that with me so I don’t feel so alone?

5. Am I still new in the process of getting a diagnosis or not?

Thank you all for your patience with me and guiding me through this. I know sometimes my questions are sometimes a bit repetitive, but it’s how how I learn best. Each time I go to my doctor with things I have learned here we always have really productive visits.

[Treetop33]

Hiya. On your second question, a good rheumy will diagnose by symptoms and response to treatment, not just blood tests. It's often trial and error until you get the right meds. On your first question, yes people with autoimmunity can react to foods, and everyone is different. For example, I can't have gluten, sugar and nightshades (maddening, as I love spicy food), but can tolerate grains, some beans, goats cheese. I've often found, however, that my imagination can play a part too, so I found I could eat more foods when I wasn't anticipating/scared of a reaction (it's like mind training, really, a bit like some aspects of pain).

Having an autoimmune condition is an opportunity to get to know your body and what it needs, and it's finding a balance between taking actions to be healthy and being able to push boundaries a little. At least, that's where I am six years in. Take care x

[dg70]

I agree with Treetop a good Rheumatologist will diagnose on symptoms and bloods. I am negative on all bloods except I had a positive double stranded dna blood test which is not unusual. I was diagnosed with Sjogrens from negative bloods but just on symptoms and Lupus from the DSDNA and very few symptoms. If you can get a DSDNA blood test this might help. Write down every symptom and a timeline as best you can before you go as you never get long even when paying privately. Also you forget once in the room. Maybe give a copy to the Rheumatologist to keep as well and any medical notes you have get copied too for them. Bloods are so fickle, one minute high the next normal. It's catching them in the act!😆

[SurferGuy]

Regarding foods - I have feeling I flare when I have mushrooms. I was just about to go down to 5mg prednisolone as I was feeling great, but then had a dish which had mushrooms and within a couple of days I went completely down with a flare. Had to increase preds to get it back under control but still haven't fully recovered.

[Beakybird58]

it’s very hard going. I’ve had a ANA result of 1:400 at my Gp’s ( higher previously with rheum) but he wouldn’t treat me as he didn’t ‘understand enough about sjorgrens etc’ - that’s after I’d asked him for steroids,as at the time I felt desperately ill. Severe continuous nausea,dry eyes and a mouth that felt like I’d rinsed in it in bleach!

He tried to ring the local( university) hospital and emailed to ask. Was told I’d get an urgent referral asap…. Still awaiting. That was 4-5 months ago.

A good friend of mine has RA and loads o f steroids at her disposal. She’s offered me some. I don’t want to go down that route but it seems DIY medical care is the only way forward atm.

And before anyone starts jumping up& down about it- I won’t take anything until I’ve tried and pursued all avenues( except paying privately as I’m having to do that for my crumbling spine🤦🏽) I just wish I could get some help& treatment. We shall see, if I fall so sick again I shall consider a low dose of steroids for a week, then half. If I feel better then at least I can see/ prove it’s autoimmune…. All very hard going..

Good luck! X

[MrsMarigold]

Hi BrooklynneDeanne. Your entire post resonated with me. I’ve discovered that a correct diagnosis is clinical symptoms and blood tests. You mention joint pain but I’m not sure I read fatigue or hairloss; both common symptoms of lupus. Debilitating fatigue is common with most lupus patients as well as eventual other AI diseases.

Food is directly connected to my lupus. Gluten and sugar are highly inflammatory for me. Alcohol as well. Thankfully there are some gluten free foods made very well compared to just 5 years ago. Hope this helps. MrsMarigold