Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I tested positive for Porphyria (!?)

Hey Lisa, I really can't thank you enough for all your notes of support through all of this. Once I'm settled in AZ, you know I'll be making a trip to come visit you!

Porphyria didn't stop King George III from having 15 kids. Geeez!!!!!!!!!!!!!!!!!!! How did he have time to govern?

Thanks Craig, I've been reading like a mad woman (I probably can't say things like that anymore in case people really do start to think I'm losing it)!
This jumped out at me:

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A high-carbohydrate diet is typically recommended; in severe attacks, a glucose 10% infusion is commenced, which may aid in recovery.

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And here I am doing strict NSD, and inadvertently eating an incredibly low carbohydrate diet. I get most of my calories from fats, which are a big fat ZERO on the carb count.
I'm wondering if I made myself a severe case because of how I'm doing NSD....

Tough to tell. I know very little about nutrition. Can you get glucose and other carbs without starch? Does your family doc know that you are on a nsd diet? I know a lot of people swear by and love the NSD but it does make me raise an eyebrow. Scientists are now calling starch the "fuel of human evolution".

http://news.bbc.co.uk/2/hi/health/6983330.stm

I am sorry you are going through all this. Hopefully you can get some answers soon. What a choice if you they tell you no starch and porphyria or starch and ankylosing spondylitis.

Craig

Hi Karen, Thanks very much. I still think of how you're still searching for your diagnosis.... I feel so badly for you. It's hard to know what monster to fight if you don't know which one it is.

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Is the porphyria diagnosis in addition to AS or instead of AS?

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I have both. Lucky me. I won the gene lottery in my family. I have genes for 4 genetic disorders in my family, and my sister got none of them (unless she has the gene for porphyria and has latent disease)! What are the odds???
(I keep asking my mom if my sister was switched at birth, and I just get a smack for asking that. lol)
I really, really hope you find answers soon.

P.S. I meant tough to tell if nsd played a role. Not tough to tell if you are losing that. You aren't!!

Thanks Chelsea. It really is a relief just to know it's SOMETHING. Even if it's bad, it's better than bad AND all in my head, you know? Treatment is pretty much what I'm already doing, that's the bad news. And preventing any further damage. But the good news is that I know the reason. This is a good step.

Hi again Craig - yes, my doc knows about NSD, and agrees with me doing it. At least... he did. I wonder if he'll change his tune now.

I can't go off NSD - it just works too well for me (when I stick to it)! I worked my butt off to get myself into near AS remission. I wouldn't even get an AS diagnosis right now, the way I am.

I *think* a few NDSers have had a problem wanting more carb, but without the starch. It's definitely possible, but I didn't really worry about it because I'm pretty small and don't need a whole lot of food to keep me at a healthy weight. I really wasn't keeping an eye on carb content at all. I'm really worried that I did alot of the damage to myself. Talk about guilt...

I might need to talk to Dragon, Chelsea, and Shauna about high carb - low starch diets now....

Am I right that they have starch blockers you can take with food in pill form? You can have the carbs without the starches. Sorry to dominate your post!!