Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Thanks for this site! 13 year old diagnosed.

Hi! We are sorta new...been researching a LOT and really appreciate this site. I was disappointed in the facebook AS "support" group, someone was upset that I said "juvenile onset" AS, and they do a lot of attacking of one another so I unjoined. I understand that it starts out differently. He has had pain since he was 8. Uveitis helped us figure out what's really going on with him. He does happen to be hlab27 positive also (ducking...that was another hot topic on the facebook site).
We have been low starch (very) for 5 days now. Also doing acv and cherry concentrate. My son has no pain today. It's early and every now and then he can have a pain free day before changing the eating so we will see if we can get a few or more good days for him this way. I'm hopeful for the first time in weeks. And *i* feel better eating this way in support of him- nice side effect.
Our first rhuem visit will be on June 22nd, at the U of MN which i am very hopeful about. I love them there. I'm hopeful they will be supportive.
Anyway, thank you for being here!
Sorry about the bandwidth!
Nicki

Welcome Nicki:

People here are very diverse (from all over the world), are supportive and open minded. It is a great place. I am happy that you found it!

The no/low starch diet makes a huge and obvious difference in the intensity of my symptoms. I hope that it helps your son. Keep at the diet with your son.

June 22 gives you some time to prepare for the visit. How old is your son now?

Since about 70% of people with AS have a gut dysfunction have you already seen a gastrointerologist? Does your son have unusual gut complaints? I believe that a proper functioning gut is important in the treatment of AS as it may reduce the need for medicine and reduce the disease progression/damage.

Best wishes.
Kevin

Hi Nicky,
I wish you and your son all the best in following the diet. As you alluded, the diet is actually quite beneficial for people who don't have a spondylarthropathy, as well as those suffering the cursed disease.

I found the diet difficult enough when I commenced in my late forties, but for your 13 year old there's a whole lot of other considerations, such as peer pressure, etc. I hope he'll have the strength of character to stick with it, and remember not to beat yourself up over minor indiscretions. Reducing pain or being pain free is the goal - and be prepared not to just go along with the status quo but rather go with your gut feelings, if you'll pardon the pun.

Regards David

I assume you son is seeing a pediatric rheumatologist at U of MN. Don't be surprised if the doctor labels it Juvenile Spondyloarthropathy instead of AS. Full blown AS (with evidence of SI inflammation) would be highly unusual at 13. My kids were also diagnosed very early. One has progressed to full blown AS, the other has not. Please discuss the diet with your son's rheumatologist. There really is little to no clinical evidence that the low/no starch diet is beneficial in treating this disease. Additionally, there are some concerns about the wisdom of severely restricting carbohydrate consumption in a developing adolescent. (A proper mix of fat, protein and carbs play a role in brain development in adolescents.). Pediatric rheumatologists tend to want to treat this disease very aggressively in children. Both of my kids begsn treatment with anti-TNF drugs very soon after diagnosis. Both are now thriving University/Graduate School students with 10 or more years of Anti-TNF therapy under their belts. They are managing their lives well despite their chronic disease. I wish you and your son well.

If any sort of special diet actually worked in treating A.S. then all the rheumatologists in the world would have their patients on such a diet. Granted you can always find someone who claims to have benefited from some diet or other but very little actual evidence exists.

AS is complicated. There are multiple pathways to the disease and so there will be more than one treatment and some treatments wont work for everyone.

Perhaps there is a silver bullet like the alfa-TNF inhibitor that works for the majority but if there are more gentle ways that might have fewer side effects that work for some people then more power to them. I consider myself lucky that NSD keeps me drug free. Right now I am craving a bowl of 热汗面! Perhaps taking a drug to allow me to eat normally and go out socializing in restaurants would be better for my mental and hence physical health. Being unable to socialize over dinners is isolating -- I just don't know what is in the sauces.

But I do agree with Stormy that a balanced diet for someone that is still growing is important. Discussing it with the doctor is a good idea and also making sure that the gut is functioning well since so many AS sufferers have gut issues and probable nutrient malabsorption.

To food!
Kevin

I didn't start with the arthritis part of my spondyloarthropathy until I was 35, but the GI part flared very badly (severe gastritis, wasn't digesting my food (inflammation in my small intestine) when I was 30 and I had GI issues (mostly constipation since before I started school). I had a great gastroenterologist long before I found my rheumy, and his dx of inflammation in my gut helped in my finally getting a diagnosis. That and my dermatologist telling me that my "dry skin" was in fact psoriasis. I also have dry eyes, but not uveitis.

It took me 12 years for a diagnosis, but finally I'm on Humira and that made all the difference. I finally got my life back.

Because: 1) it took so long to find a rheumy who could and would diagnose and treat me, and 2) my current rheumy believes in holistic (trying everything that makes sense), I also do a lot of other things...I tried even more, but kept the things that seemed to help.

I tried the no starch diet, but that didn't seem to be what my gut needed. Yeh, maybe I didn't try it right, but I saw no effect when I did try it. I did see a naturopath, and had IgA / IgG food sensitivity testing. I'm not sensitive to gluten (also had an upper small intestine biopsy and HLA-DQ2/DQ8 come back negative), but Casein was off the charts and egg was mild. So I'm cow dairy free, and only eat a little goat or sheep cheese; mostly I eat coconut milk products like coconut milk yogurt in place of dairy milk products. My rheumy also had me get the same IgA/IgG work done for S. cerevisiae (the yeast used in beer and bread making, Bakers yeast) and I'm also sensitive to that. I already wasn't eating much starchy food including bread and I hate beer, so it was easy to be yeast free in my diet.

Thus, I do think diet and thus a leaking gut from years of food sensitivity is what led to my arthritis (inflamed joints) and other systemic symptoms. Just for me it seems to be dairy proteins (casein and maybe others such as whey, I stay away from all of them, I read labels...sodium caseinate is just another form of casein for example...and if I want a protein bar, it has to be soy protein or pea protein as whey is the common pervasive protein used in so many "protein" products), eggs (maybe), and yeast. Even on Humira, I stay on my dairy free, yeast free, eggs in moderation diet.

Getting IgA/IgG food sensitivity blood work done is certainly worth considering. It was for me. Before that, I had kind of figured out the dairy part of it from a food elimination diet, which doesn't surprise me since casein is my worst enemy.

I also do a number of supplements; started with the naturopath and an endocrinologist, and added to by the rheumatologist...I kept the ones that seemed to help / seemed necessary.

And a number of more mechanical treatments, like ice, PT over the years, etc...whatever works...I still use most of these things, even now on Humira. Just that I need them less and/or they actually are effective now and its not a constant losing battle.

Certain symptoms like Uveitis can really help with a diagnosis. Make sure you take the letter from the eye doctor to the rheumatologist as proof.

Also remember since many of us flare, it can take quite some time to determine what helps and what hurts. If we try something and feel better, we may think its what we did, but it may just be between flares. But if it happens over and over again and we see a trend, it becomes more believable. But that's why it can be frustrating trying to figure out things like diet.

Good luck with the rheumatology appointment!

Thank you, all of you!!!!
I am so learning, learning, learning. He feels like his pain in general is reduced. It's been a big enough relief for him that he is continuing to eat lots of whole foods plus dairy. He is incredibly active and we are working hard to keep enough fat going in. He also eats lots of fruit.
Yes, as a mon, the last thing I want to do is compromise him nutritionally, so we are keeping a daily log of everything he eats and any supplements he takes and any pain he has, and how big it is to bring with June 22nd. I've read lots about how there's not much evidence about diet helping but I've also heard enough people say it has....and I am aware that not one thing helps everyone.
He has no bowel issues at this time, which is great.
Thank you again for all the helpful info!!!
Nicki

IF, IF in fact AS is connected to klebsiella and/or vice versa, doesn't it worry you guys taking stuff like Humira? They tell you so definitively not to take it if you have an infection or are prone to infections. I have managed to keep my doc from bugging me about taking it just because of that fact. It scares the heck out of me. So I am interested in hearing how that works taking something like Humira if you have klebsiella?

I have been on an Anti-TNF (Enbrel) for the last ten years or so. Yes there have been times when I have had some infection or other because of it. The worst was when I ended up in hospital on a drip of antibiotic. It was soon sorted with no long term affects.

I suppose it must depend on just how bad your A.S. is. If the A.S. is anything like it was for me then you would be more than glad to take just about anything for a bit of relief. Like all medications it is a case of balancing the risk against the benefit.