Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Any life tips for newly diagnosed?

Gluten free is a start. But it could also be another food allergy / sensitivity (or not)

For me, one of my big problems is the casein protein in milk. I need to be further tested to see if its also the whey protein. Also, it could just be cow dairy, but some have problems with goat and sheep; I need to see if that's the case for me.

It is one piece of my puzzle. Going dairy free alone has not been enough, but as part of my treatment plan, it has been useful.

Casein allergies are just as common as gluten allergies; just not in the news as much.

I actually have never been told anything about casein proteins by my doctor. I shall bring it up. Thank you. We live in Connecticut where it is legal to purchase raw milk. There is a farm that sells milk from Jersey cows which has the A2 casein, which is much healthier. We also purchase our cheese and yogurt from them.

My big concern is for my younger brother and sister. After my diagnosis, I asked them to be treated for the HLA-B27 gene as well. They both tested positive. I hope they don't develop AS as the get older.

Hello there,

The advice I give to anyone new that comes here is learn all you can about AS... treatments such as different medications, diet and alternatives.

You should be the biggest advocate and also care provider in your treatment... doctors can help, but often no less about AS than many here and also have very tight schedules that they can devote a half hour/hour at most once in a while when they see you. You live with this condition 24/7.

Knowledge of AS and preparing for your doctors visits should help long term.

This is great site to come back to ask questions and also receive support.

Best to you,

Tim

I love my TENS unit. Gives me pretty good relief when sciatica or other nerve pain kicks into high gear. I wear it 24hrs a day, if needed. Even to work, though pain was too great once and I had to go home after half a shift. Like Tim says, know the disease and the treatments.

My dad was positive and had lots of back issues. He's been gone far longer than I've had symptoms, so I never knew if he was diagnosed with a spondy-type disease or not. He had 4 back surgeries that gave him a lot of nerve damage in legs. He was diabetic with neuropathy, too. My brother is also positive, but other than having some mild to moderate PF, has no other symptoms. (And I know their B27 status due to a family member being treated with bone marrow transplant and all the family on both sides were tested )

Good luck with your new ideas for handling this disease. And this website is awesome! My pain mgmt doc is awesome and keeps me pretty comfortable between meds, procedures, modalities like TENS, and getting me on FMLP. You don't mention (or I missed it) if you are still working. If so, and it's for a company with more than 50 (I think) employees, you can sign up for FMLP which will protect your job if you need to be off for an extended amount of time under 3 months. In my case, I take it intermittently for procedures or acute exacerbation of symptoms, like the sciatica mentioned above--took 3 days. Google it if you want to know more.