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.
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.
Hi Jingabee16, sorry to hear about your son I was in a similar situation when I was around his age with pain on my hips which alternated.
At one stage I was walking to the toilet pushing an office chair since I could not stand up and eventually spent a month in bed,
Long story short I went to the hospital and I got steroid injections directly into my hip joints. Till this day I never suffered with my hips again. However the disease later moved up my spine after many years.
I am telling you this because if things get out of control, there's something you can try.
Good to hear that diet makes a difference.
All the best to you and your son.
Thank you L33, It's helpful to hear from people who have had back/hip issues from a young age. It's difficult trying to figure this all out on my own and I don't feel like his rheumatologist is very informative. She pretty much didn't leave time for questions and dismissed his case as being a mechanical problem since it improved. This is after she wrote me an email stating he was showing signs of back arthritis. Granted we do PT and go to an OMD but those therapies work best with diet. I switched him to another dr. after the last appt. Hopefully, she will be a better fit.
I had a similar experience with a rheumatologist. When all of my tests came back negative, she became curt and dismissive. Told me the pain was in my head, even though she had seen my puffy, swollen fingers at previous appointments.
By then I had found this site and was already improving. Since all I wanted was to be pain free, I didn't see the need to pursue a diagnosis. I had also come to realize that rheumatology doesn't have much to offer....just medications that are expensive and potentially harmful in the long term.
In the end, the only good thing that came from meeting with a rheumatologist was that it led me to learn about AS....which led me straight here and the NSD.
I hope you have better luck with the next one. (No 11 year old gets arthritis from wear and tear.) But if not, it sounds like you already have a treatment plan that is working.
The remarks about doctors can really get me going and so I'll stop already since it isn't productive. Yes, just find a different doctor and in my estimation it could easily take more than ten different doctors before you find a competent and empathetic one!!! Sadly most must be in the business for the status, money and their over-inflated fragile ego.
But I know a case of a woman that spent 15 years going from doctor to doctor being diagnosed with bulimia. Finally the last one she met decided to ignore the history file and opinions of other doctors and listen to the patient. He discovered that she actually had Chron's disease and she improved after all those years of suffering.
My mother broke her arm and an incompetent surgeon decided that she didn't need surgery. After a year of monthly visits with him telling her that she's getting better according to the monthly "rigged" X-Rays despite her telling him that the pain is not going away. I finally got frustrated with the situation and I took her to a different doctor at a non-government run clinic that did a thorough evaluation. Upon the next visit you could see his fear regarding her case and he told us that he can not get involved since she is the responsibility of another surgeon. We immediately called the original surgeon for a visit. Upon walking into his office (I was already about to take his head off before ever seeing him) he spun around on his chair stating that surgery was planned and that the best surgeon would be taking care of her. Obviously the doctor at the private clinic called the surgeon lacking enough sympathy for he suffering. The surgery worked. I don't know why that doctor would let her suffer for over a year with a broken arm that was never going to heal. He deliberately had her arm positioned in the X-ray to hide the break and I can only imagine that the technician was involved in the fiasco as well.
I have at least a dozen stories like this and it has given me a very biased perspective of the whole medical establishment -- there is ample incompetence and they definitely cover each other's arses! It is a sad fact that doctors score lower on medical school entry exams in comparison to physics majors, engineering majors, and many others. Perhaps it is a good idea to interview the doctor regarding what their undergraduate major was and their GPA. "Just 51 percent of students who enrolled in medical school in 2012 graduated with degrees in biology, according to the Association of American Medical Colleges data." --
https://www.discover.com/student-loans/college-planning/majors/become-a-doctor.html So, on a positive note, don't fight with any doctors. Get a different one and try rating your MD
http://ratemd.com/
Thanks for all the support and advice Kellybells and Robin H. It's comforting hearing your stories and helps me figure out a plan. I agree that being pain free is more important than a diagnosis. Keeping the inflammation down to prevent damage also equally important and go hand in hand. It sounds like it's tough finding a good Dr. I will ask around for recommendations. Many Doctor's don't have reviews.
I have another general question for everyone. My son was doing better up until last week when his PT went overboard. He had him do a bunch of lunges at a time when he still avoiding stairs. I knew at the time it was too much for him but didn't speak up because he was doing so well, like he was riding his bike 4 times a week for 30 minutes and able to participate in a little more PE. So I thought maybe I was being overprotective, and maybe the PT knew better. Apparently not, next time I will speak out.
It took a week to recover and he was out of commission all of last week. He felt better on Sunday but then went to a bday party and overdid it again. This morning he said he is feeling better.
Do you find that physical exertion can also flare up the joints or are flare ups mostly diet related? His flare up was at the top of the femur and to a lesser extent in the si joints. It was not muscle pain.
Just wanted to add he went from a pain level of 0-1.5 to pain level 2-3, so it wasn't a major flare just an irritation. But it was enough to keep him from wanting to exert himself. He still did his stretches and plenty of walking.
I am also considering having him switch to yoga or pilates instead of PT. What do you think?
Hello Jingabee16:
Exercise:I think knowing basic yoga is a must. I am not familiar with Pilates but it's also probably good. Swimming is another excellent low impact physical activity. There are many threads about how exercise is important (it's a no brainer!) The stretching is essential but some resistance training is important too because it reduces inflammation, promotes growth hormone which is essential to healing, and many other positive benefits. There seems to be some benefit from high impact too for AS people but perhaps AS people should limit it -- at least find their own limits. I often ran and still can. The impact seems to do the spine good for me and improve rest.
Get your son to learn to listen to what his body tells him it needs; i.e experiment and push but learn his personal boundaries. Mind you, our instincts can be counter-intuitive. Pain usually tells us to stop moving but sometimes the pain is usually from not moving enough. So experiment an learn.
If your son has learned all that he could from PT then perhaps it is time to move on. It could be a hard decision for both of you. As they say "people can remember all the wonderful things that you do but fart just once!..."
As to stretching. There is debate and research about what kind is best -- slow steady holds or fast jerking movements. Old wisdom, based on I don't know what, said that the method of jerking stretches caused injury, and I would agree it is true when the muscles are cold. But modern studies are proving that rapid stretching is best. You will see sprinters doing such warm ups just before a run. They will be swinging their legs at maximum range and doing it fast while standing; they are seldom seen sitting on the ground and holding their toes in a stretch. I suggest that you dig up articles and decide for yourself what is best or even talk to the PT about the pros and cons of the different stretching methods. Since AS people's bodies don't respond to injury normally then perhaps slow and gentle stretching is best since we probably are not looking to become sports stars.
New and Old Injuries:Old soft tissue injuries or recently strained soft tissue are strongly attacked by my immune system now creating symptoms of burning in enthesis and tendons, spasm in associated muscle, and these symptoms do not go away. They worsen with muscle overuse resulting in micro-injury, fatigue, lack of sleep, being dehydrated, consuming too much coffee, and starch. I am not on any medicines and avoid pain killers like the plague since they damage the gut and make me more sensitive to foods.
Gut Healing:John, the webmaster, I think has good advice on using fats/oils in gut healing. It is a step in a sound protocol that I have been negligent on. I have been overly focused on rotating the use of natural antibiotics and then using probiotics along with nutraceuticals, hence I may have a decent microbiome (containing a few nasties) but the integrity of of my gut is still poor. John has a number of articles which include gut healing that I need to revisit. They include using dietary supplements (borage seed oil, etc) and fasting.
https://www.dropbox.com/s/mh3lrsm8208glge/ASonlineGUIDE1112.pdfand he briefly discusses the use of borage seed oil and many other nutrients at the following URL
:
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=516907#Post516907Also, every month some people do a three day apple fast on the weekend to eliminate parasites, allow some microbes to die off and give the gut a rest. The theory is that it will heal if it isn't busy. I do have a concern about fasting and how it creates ketones. Ketones can be a food to promote some parasites and also encourage them to morph into an aggressive state. But believe that John states that those parasites (Candida Albicans in particular) should have been eliminated before doing the fast. Someone please correct me if I am wrong.
I hope this helps. It helps me revise and fix the many things that I am doing wrong to myself. HAHA!
Just one more note:
People need to respect a person's limits:
AS should teach him to learn to be kindly assertive in a mature way (no wining or long winded explanations unless he feels it is necessary or the other party needs an explanation) and not allow people to push him to do things he feels are not good for him: not a family member, not peers, not even evil bosses! People pleasing can make a person sick.
Hopefully when he is older and might find himself in a job that he can't afford to loose he will have the wisdom to let it go and hopefully have supportive people around him.
My symptoms are primarily mediated by diet now. But once I'm inflamed (I get a bit cheaty with NSD now and then, I confess) then exertion makes things worse.
Pre-dietary modification I was pretty much always in pain, and exertion very clearly made things worse. My knee would double in size, or my lower back would spasm, or I would get a strange pain deep in my hip joint when I overdid it (long walk, big workout at the gym, etc.) Could keep me off my feet for days.
I've only been doing NSD since January but I had been grain and dairy free for years - I think this massive reduction in my starch and dairy intake gave my joint cartilage time and space to actually start healing and improving. My joints are much better now than they were 10 years ago, even though I'm that much older and in my 40s now.
It's possible that your son's pain is triggered by exertion because his joints haven't had enough time to heal. To get to the point of visible damage on xray or MRI, there has to be significant and sustained inflammation. My guess is that takes time to really heal and recover.
One thing that I found really accelerated my joint healing was plain gelatin. I would mix it with juice and drink it down or make jello. There are lots of expensive variations on the market: type 2 collagen, collagen hydrosolate, keratin hydrosolate, etc. but I felt I got the same type of connective tissue benefits from plain old gelatin.