Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Need advice for 11 year old son

Hi everyone,
My 11 year old son has been diagnosed with Sacroiliitis which is sometimes the first sign of AS. My grandpa had Ankylosing Spondylitis. My son is HLA-B27 negative. I am wondering if his Sacrolitis is going to develop into AS and am confused by his negative result since AS runs in our family.
His symptoms
Hip and SI joint pain
He feels best in the morning
He flares after activity, especially stairs
He has had pain from 1-7 since December usually in the 1-3 range.
His pain goes from hip to hip. It started in the right then went to left and now is back in the right.
We go to PT and accupuncture/massage with ok minimal results.
He takes tumeric for inflamation.
Can you have leaky gut if there are no other symptoms than arthritis type pain?
I started him on the NSD 5 days ago. How long does it usually take to get results? He hasn't shown any improvement. I am wondering if I need to have him go on the AIP, or the AIP with NSD. I really want to get his inflammation down asap so he doesn't get permanent damage.
Thanks for your feedback,
LeAnn

We and the doctors are rather apt to put everything and anything down to A.S. especially with your family history. Alright it may well be A.S. but now is not the time to panic.
I assume you can have bowel problems with or without A.S. but best check this with the professionals.
I have several different NSAIDs. over the years and found that most took about a week to start working.
You are very right to try to get the inflammation down A.S.A.P.
I take it your boy is to attend regular rheumatology out patient appointments. It is important that he does as the A.S. may well go in to remission only to return latter so you don't want to loose touch with the rheumatologists.

Hi jingabee and welcome!

I'm about 7 months into NSD now, also HLAB27-, and my only symptoms are arthritic (no bowel issues).

It took about 2 weeks for me to see steady improvement with NSD, but mostly because I was eating starche without realizing it and I was really, really sensitive to even tiny amounts. Even now I need to keep my starch intake under 2g/day to remain symptom free.

"Hidden" starches for me included turmeric and ginger and really all of the hard spices (cinnamon, pepper, etc.) Also: carrots, winter squash, mushrooms, grapes, cabbage (sometimes), apples, apple juice, strawberries (sometimes), chocolate, nuts, seeds. Others here are ok with some of these foods but not me,and I struggled til I cut these foods out.

Eventually I landed on a diet of eggs, meat and greens until I could figure out what did or didn't have affect me, and have slowly been adding foods back in (red peppers! asparagus! fennel!) ever since. Testing with iodine is super helpful, since some foods can be starchy when underripeand fine other times. If your son doesn't improve you may want to try a similar approach. My pain is now a 0 or 1 most days,which has been life changing.

One more thing: dairy isn't starchy but lots of people on here can't tolerate it. Even yogurt and hard cheeses, which are low in lactose, give me terrible pain and stiffness.Another thing to look at for your son.

Good luck!

Thank you for you response Fredrick. Yes we see out rheumatologist regularly.

Thank you Kellybells, It is helpful to hear from you since you are also HLAB27- and still have positive results from the NSD. We've been on a combo of NSD plus we cut out all nightshades, dairy and eggs for a week. I am diligent about testing with iodine. I'm on the diet too to support my son. We might have to try your approach as there haven't been any changes yet. I think we will carry on for a few more days and then adjust. I tested our Tumeric supplement and it tested fine but we may try cutting it out.
Best,
LeAnn

I should mention that by the time I started NSD I had already been dairy and grains free for years. While I was still eating lots of starchy foods, my starch intake was likely far, far lower than the average person's.

All of this is to say that my fairly quickly response may not be typical. I also likely had less healing to do before noticing improvement. I recall that when I first cut out dairy I was in a significantly worse state, very debilitated. It took a month before I started to notice improvement and several more months for my joints to heal. Your son may just need more time.

Thank you again. We commuted to doing a month of the diet so we will do that one hope for changes. I may alter a few things. My son went to an OMD today and they did an adjustment by pulling his leg to correct the fact that ihis hips weren't aligned. At first it was fine and he seemed better but a couple hours later the pain went to his ankles then he seemed ok again but just now he showed me a subtle itchy rash above his lip that was keeping him awake

We have about 10 days to complete our 30 day diet. I don't think it's helping so far. Last week I was super strict and was down to just Beef, Chicken, shrimp, homemade chicken broth, cucumbers, spinach, olive oil, lemon, salt, honeydew, cantaloupe, watermelon, cherries, pineapple and raspberries and still didn't see improvement. We use mostly organic. It's near impossible to get a kid to eat only meat and greens so I don't think I'll be able to restrict all fruit. Are any of the foods I listed above red flag foods?

We also used unsweetened coconut and coconut milk, savory leaves, basil leaves, tarragon and bay leaves

I just want to say that I am sorry that you have such a youngster dealing with this disease. The NSD has markedly improved my quality of life, but it took time and a lot of discipline.

I imagine it is difficult for an 11 year old to internalize and hang in there.