Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Daughter's diagnosed w/HLA-B27

Both my daughter's have recently tested positive for the HLA-B27 gene, they are 18 and 19 years of age. They both have lower and mid back problems but show no signs of fusing yet. We stay away from anti-inflammatory drugs using only Acetaminophen for pain. They are both taking a pro-biotic. I'm hoping this will help with gut health. If they where your daughters what would you do next?

Hello there,

Problem with being a parent is all the worrying we have with our children. I hope I do not have to cross this bridge with my son one day (now 6), but you never know.

I already emphasize healthy eating with him... but he still does get his share of chocolate, popcorn and cookies, but he cannot eat "treats" until he has eaten what is on his plate which is healthy and most often homemade food. I do not allow soda in the house and fortunately he does not like it, I think that is a huge plus. He also loves organic yogurt that has probiotics, that I consider another plus.

If my son presents AS symptoms one day... I would discuss with him following:
- Probiotic foods (sauerkraut, yogurt etc..)
- No soda (if he starts drinking)
- No junk food
- Little processed foods
- Whole grains if symptoms not that bad
- Limited alcohol

I think there are "smarter" treats he could enjoy.. and I would emphasize these (chocolate, ice cream, flan, popcorn...) for him to try at first.

I have been NSD since March 2002... so my son has only known his whole life that dad has a "special diet"... so maybe if needed it would not be as difficult choice for him.

Of course, if he is full grown and out of the house, he will need to make his own choices.

Best to you,

Tim

I'd tell them to stay active, have some fun, and don't spend time worrying about it now (I have two daughters, both +). Very few people HLA-B27+ will ever get AS, so it doesn't do much good to fret over the possibility. If they do develop problems later, then deal with it then. I take OTC naproxen as needed; I firmly believe you should reduce inflammation. Naproxen in low doses (such as OTC) has shown very little negative effects.

--Greg

I wonder if I had "taken care of my gut" sooner, if it wouldn't have progressed to the joints?

For me, I found out I was allergic /sensitive to dairy, so wonder if I had known that sooner and eliminated that from my diet sooner, if it would not have progressed so far?

If they were my daughters, I'd have them tested for food sensitivities and then cut those from the diet.

I'd have them do the probiotics.

I'd make sure they weren't struggling with bowel issues like I was.

I'd make sure they stayed active as much as possible.

and I'd have them find a rheumatologist now before things get bad, to have for if things get bad, instead of trying to find a rheumatologist then.

I am 18 I have no fusing but do have enthesis in shoulders and damage present in SI joint as well as other things that pointed to AS. MRI as well as muscle skeletal ultra sounds both showed inflamation in back and hips. I have been diagnosed with AS.

I would not have made it without my mom and the number one thing she did for me was believe in me. That is huge with AS no one sees why you are feeling bad.

If they are having a great deal of pain or even some pain most days and morning stiffness then get to a rheumatologist if you have not seen one. He can do more tests to get a clearer picture. It is better to treat before the damage occurs. The meds can be scary but it is better than joint damage.

18 and 19 may seem young but it not too young to have AS.

Great advice! I'm going to schedule a rheumy appt. so we know exactly what we are dealing with. Thank you so much.

WARNING: Acetaminophen is very very toxic if taken on a regular basis. It will shred your liver. I personally know of two people I work with that took Tylenol for every headache they had and they both ended up in the hospital from its toxicity. Chronic systemic inflammation damages systems throughout your body and causes long term damage like heart disease for one. You need to control inflammation any way you can, NSAID's, Anti-TNF's, diets, etc.