Worried. Protienase-3. pANCA: Positive.

[spencerk]

Hi folks,

I initially got my bloods done and my eGRF was at 56 (45 year old male, fairly muscular). I went to see a specialist who said it was only because of my muscle mass, I was not happy about, this so he referred me to another colleague who did some more indepth tests.

Basically over the past 10 years I've gone eGFR 72, 61, 63, 57, 61 and 60. I've always been low. For my age it should be 80. My toilet test has come back fine. There is never any protien in it. My creatinine levels are high, but not major. 120, 115 and now 110.

Anyway, the specialist today was, erm, concerned - he said he's seen people with muscle before without such a low eGFR.

He did have a test result that he showed me,

Protienase-3. pANCA: Positive.

Protienase-3 (Phadia) 5.10 iu/aL

He said this result was something he could not leave. He was a lovely man, but spoke really fast and I couldn't understand a lot of what he said. Does anyone have an idea what this means?

Hes going to do a biopsy, as he said this is extremely strange, none of my other tests - apart from eGFR - came back bad, my blood pressure is fine.

He mentioned something about an autoimmune issue, but then said I had no markers for inflammation.

Anyone has this result before,

Thanks loads

Spence

[Sarah_402]

Hi spencerk, I think that test is used for inflammation of the blood vessels or autoimmune vasculitis. Is he trying to confirm if you really have this by doing a kidney biopsy or another kind of biopsy ? I really don’t know much about it but if you end up having that maybe prednisone could help you.

I had to have a kidney biopsy to understand my decreasing eGFR, so even though I didn’t really want a biopsy it got me the answer I needed and treatment. Good luck!!

[spencerk in reply to Sarah_402]

Hey Sarah, firstly I have to say.... Woohoo, congratulations on your diagnosis. It must be very good you got things sorted.

Yes, I think he mentioned an autoimmune disease. I have a separate issue (well, they actually might be exclusive now) of a low white blood count, which I am going to see a specialist.

We have talked about food allergies, well.. I'm seriously allergic to wheat. Seriously. When I eat wheat, within 10 minutes my heart rate goes up and my blood and brain feels as if its on fire for weeks. One doughnut can makes feel like I'm going to explode for 5 days. 😣🙂

I have had wheat recently.. (all through Christmas, then carried on at weekends) My normal daily diet consists of about 7 different foods only, and none of them taste good. As I weight train, sometimes my body just craves food and I say fk it!! 🤣.

I don't think I've gone more than 5 or 6 weeks without wheat. So, I'm hoping this inflammation is down to Autoimmune issues because of wheat... maybe.. I'm also allergic to dairy, soy, most fruit, onions and all vitamins.. ugh. To look at me, you'd think I was fit, I have a good frame of muscle and look very young for my age. I have no wrinkles at all at 46.

I have realise that i eat waaay to my protien and always have. Probably 200g plus for 10 years, this could have damaged my kidneys, I will bring it back to 140g per day.

My worst fear is that I won't be able to train and lift heavy, training is my life...

Also, the reason why my Neph is so confused is that my kidneys are not leaking protien, urine is perect, BP is around 125/75 (as long as I have a special veg drink, which brings it down 10, 15 points naturally). My resting heart rate is 52, my heart rate drops 25 points within 30 seconds ds of stopping cardio (which meant to be a good indicator of health) So, I'm hoping it's not full blown autoimmune issues.

Will update when I know more,

Take care and train hard?😉🙃🙂

[Sarah_402 in reply to spencerk]

I stopped eating wheat, dairy, egg whites, preservatives, dyes, and other foods that gave me allergic symptoms. I don't test positive on food allergy testing because I have mast cell reactions which is a rare and different way of being allergic, but still allergic. It seems like more and more people are intolerant or sensitive to wheat and dairy and just have to give it up. The symptoms are real!! It took me so long to give up wheat and dairy but I have been able to give them up for 6 years now. I still want bread, donuts, pizza with gluten....ect.

In the US, wheat and dairy are in so much food. They are like our staple foods.

When I started to weight train, I learned about paleo diets, and I guess that is kind of what I do now, but low meat. Like you, at one point, I was so symptomatic I ate only 5 foods, now my body tolerates more but I don't push it. I know how bad it all is.

My doctor said I could weight train as long as I lowered the protein to 45 grams a day. Now I'm wondering if I can even keep my lean muscle mass on 45 grams?? Seems pretty unlikely. I am 45 and 125 pounds. Weight training became a passion for me when my health was so bad 6 years ago, before I knew my kidneys were a problem. I know its possible weight training could be bad for kidneys, but the gym is a big part of my life. You understand. Good luck spencerk, if you have the kidney biopsy please let us know how your doing.

[ICE187]

You should post this in the Vasculitis forum. Vasculitis will often target the kidneys.

[spencerk]

Hey friend. I have been eating 1.5g per lb of body weight, for years - I'm around 202lb. So. That's way too much. I'm limiting myself to 140g now and upping my carbs and fats.

I know my eGFR should be 80+, but alas its 60. Although it's been around 60 for the past 8 or more years, surely if there was any kind of progressive kidney disease it would have gradually gone down. 😕.

I think this is why the specialist is confused a bit, apart from the rest result above and low eGFR, everything is fine. My BMI is about 20, 21. I'm 202lb, 5, 10f.

And yes. I need to be stronger in regards toy nutrition. 🙂. No more wheat for me or refined sugars. I'm done. With that, extra cardio and less protien, I will do a private test in a month. 🤞. Oh and thanks for the book suggestions friend,

Spence