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

Hi Jingabee, everything on your list of foods is on my 'generally safe' list, so I'd say you've done a great job at coming up with a plan! I've been slowly adding all of the fruits you listed over the last few months and have done really well.

I've had to give away the odd pineapple or bag of cherries because they were too underripe and tested starchy, but not often enough to stop me from buying them. I eat both fruits almost everyday. Of your list, pineapple and raspberries are both good sources of vitamin C, which is something I struggled to get enough of in the early days of NSD.

I'm so sorry your son hasn't shown any improvement yet. Tough to stick with a program without positive results, especially for someone so young. Hopefully he can get some relief soon.

Hey Jingabee,

Just wondering how your son is doing now. It is very unusual in my opinion that he feels best in the morning and worst after activity - morning pain and stiffness, as well as decrease in pain with activity are key symptoms of inflammatory arthritis and are usually always present with AS. Have you tried giving him any NSAIDS (Ibuprofen, Diclofenac...not Acetaminophen) and if yes, how does he react to them? Do they help with the pain significantly?

Hope you guys are doing better, it is not fair for him to suffer at such young age

Update: My son is doing better. Usual pain level from .5 to 1 these days. We are mostly on a no starch diet and it really took a month for improvements. We are still in denial that it is the diet that is making the improvements as it could be other changes we are making. We don't want it to be the diet but it looks as if it may well be. We have tried rice twice and both times his pain shot up to 3 within 2-3 days of eating the rice and lasted about 8 hours. Still not definitive proof as activity also can make him flair. We tried rice again yesterday and will avoid it, if the flair up happens again in 2-3 days. We are going to a functional medicine dr. in 2 weeks and getting tested for allergies, parasites and possibly other tests. Any advice on that front? What would you do if it were your kid?

Just to update my son is doing better and it appears to be related to the NSD. It really took a month to notice improvements from a second hand perspective. Most days he is at a pain level .5-1 and once in a while at a zero. We have tried rice three times and every time after trying it, he has three days after pain level 3-3.5. Does it take others this long to see a flare after consuming starch? The first two times I was thinking it might not be related but now after the third time it just seems like too much of a coincidence.

Hi JayTeee,
Yes, I think it's strange he feels best in the morning too. I emailed his rheumatologist at Stanford children's hospital and she says that sometimes happens. She also says his MRIs show signs of back arthritis (I think they don't want to say AS, though there are other types of back arthritis) We have another MRI in about a month and she said we will know more then. I read that AS progresses differently in kids than in adults. I feel like they are doing absolutely nothing for him except waiting for him to deteriorate so they can get a diagnosis. Some activities really seem to make it flare especially stairs and high impact activities. We just got a new PT and he is awesome. When my son finishes a session with him he is at zero pain and one day he was at a three walking in the door. So maybe the wrong kinds of activity are bad but the right kinds help. He was on naproxen for about 6 weeks and I don't think it helped that much. It did take the edge off. He still had some really bad days while on naproxen. He is better now on the NSD than he was on naproxen. I wish I wouldn't have put him on that for so long. Still holding out hope it isn't AS but his positive response to the NSD isn't comforting, also it must be inflamitory if diet is working.

Thanks Kellybells,
It's good to know we're on the right track. We are able to add many more foods now. Blanched almonds are great, also onion, garlic, lemon, shrimp, cauliflower, broccoli, apples, dates, soy milk and avocado. Soy milk helped so much!

Success on the NSD is both good news and bad news, right? It's life changing to have control over the pain and not have to take harmful meds. But it's sooooooooo restrictive.

On the bright side, I have been finding lately that my starch tolerance has improved, so there is hope. Since Feb I have been following a protocol of taking alternating a probiotic for 6-8 weeks with an herbal antibiotic (e.g. berberine, caprylic acid, oil of oregano, etc.) for 1-2 weeks. After several rounds of this, along with a very strict NSD, I now find I'm able to regularly eat some of the very low starch foods that used to cause problems, like carrots, mushrooms, winter squash and grapes. I am also finding that my occasional big cheats (bread, popcorn) are not as severe, though still painful.

Speaking of which: I had white rice a few days ago. Pain and stiffness kicked in 1.5 days later. Took me a moment to think back to the likely trigger. And it still hurts now.

I didn't do well with blanched almonds or dates a few months ago but I'm curious to try again now that I seem to have better tolerance. Glad that your son seems to do fine with them, that's very good news!

With your son being so young, strict food rules are not much fun. If you're inclined towards baking at all, you can do alot with ground blanched almonds. I used to bake quite a bit with almond flour: crackers, pie crusts, muffins, cakes, etc. If you're interested, you can Google Elana's Pantry for some great recipes (I even bought her cookbook!)

My son had a donut a couple of weeks ago at my daughter's b-day party and that messed him up for two weeks. We went to a functional medicine Dr. last week and sent in stool samples today. Also have blood work scheduled, the typical tests plus vitamin/mineral testing. He put us on a strict diet for detox. Basically only grass fed beef, skinless chicken, lean meats, wild caught salmon, sardines, leafy greens, most veggies except nightshades, all coconut products, avocado, olive, avocado and coconut oil, berries and cherries are the only fruits allowed, nuts and seeds, tofu, non-dairy unsweetened "milks" We'll see how that goes. Seems good so far. I am eliminating the starchy foods on the list for now. He had an awesome week last week 0-.5 then I gave him some rice for a few days to try to inflame him a bit for the stool test but the rice didn't affect him much. Normally he would have come home from school in 3-3.5 pain on Tuesday but he was totally fine. Later that night he was inflamed after a long concert with a lot of standing and stairs but it only lasted a few hours. Maybe he wouldn't have become inflamed from the activity if not for the rice. He seems able to do a lot more physically without a reaction lately. He was running around at a park on Saturday and didn't pay for it later. His OMD was able to get him from a .5 to a zero pain level yesterday. We decided to go to a functional medicine Dr. for the gut healing because I feel concerned about using the correct dosage of oregano oil or other supplements for a kid. The functional medicine Dr. we chose is an actual MD so I feel better about that. It feels like we are on the right track. He has an MRI in a couple of weeks.

Great news on the MRI. There are no longer signs of sacroiliitis. He is healing and we are on the right track. There is still a long way to go as it is evident that he has something that is causing leaky gut. It's something that feeds on starch, so could be klebsiella. Hopefully we'll be able to resolve that with our functional medicine Dr. for a full recovery. His rheumatologist was oddly curt with us. Her assistant, however, spent a lot of time with us asking what we were doing and taking notes. At the time I didn't know the positive MRI results. Then the rheumatologist came in with the positive result delivered in a monotone voice. She was also really short with us and didn't seem open to questions. Still, great to know there is physical evidence that we are on the right track.

Just watched a documentary The Connection that our functional medicine doctor recommended. https://theconnection.tv/ He also recommends Mindspace. It’s a meditation app. I think think we are going to start doing yoga daily.