I HAVE to eat carbs!! Great!
 

hey all,

I have kind of a strange dilemma. The time I lost weight I did a high protein, moderate carb, low fat diet and it worked well. I recently found out I may have Acute Intermittent Porphyria. Because of this, I can not limit carbs at all. The dr. actually wants me to eat a lot more carbs. On top of that, I'm not supposed to cut calories more than 250 calories below maintenance. I didn't take it seriously at first, but I ended up in the hospital for 2 weeks, semi-psychotic, unable to eat or drink anything, with horrible stomach pains. Ended up getting a clot and dropped 15 pounds in that 2 week period. i was SICK!

Since then, I've been listening to the Dr. The problem is, I can not lose weight! It takes me a month just to lose one pound. I dont have time to exercise 4 to 5 hours like I used to so I'm barely crawling along. It's making me crazy! I was just curious as to whether or not anyone had any tips on losing weight that aren't diet related, like maybe exercise at a certain time, etc. Thanks so much in advance.

Wow, this must be so challenging. I might try to stick to the whole foods based lifestyle. Just because you must eat more carb, make sure they are the nutritious, filling carbs. I'm sure that is better for your body anyways. Make sure you do a minimal amount of processed food. (I don't know if you already were doing this before, though).

As far as exercise, maybe increase your cardio to compensate for having to intake more calories?

I don't have any other advice to give you, good luck and hang in there!

PS: I'd give my left ovary to weigh 177lbs right now...:)

Building muscle may help - it does help burn fat. With you having to intake such high levels of glucose (those with AIP often need an infusion on top of diet) may make it take longer for you to lose. But if you keep at it, I think you'll see results.

You said you MAY have AIP. Will you get a definitive diagnosis soon? If not AIP, what else could it be?

I'd get a second opinion. Not because you're hoping the second Dr will tell you what you want to hear but because you want to have more than one opinion when dealing with something so life altering.

I agree.

There are usually multiple ways to deal with any situation. One doctor's method, may be different from anothers.

Medicine is not perfect, that's why it's called practicing medicine. ;)

Yeah, I got a 4 day glucose infusion when I had what they assumed to be an attack along with hematin. As far as a definitive diagnosis, I have no idea. I've seen 3 different doctors already. The first said I have it as tested by a blood test. The other doctor did a urine test and said I don't have it. The third doctor said he can't test for it until I get an acute attack and is meanwhile testing me for lupus, mixed connective tissue disease, etc. I guess I have to wait until I get another attack to get more testing done, which of course I'm not keen on. That being said, the third doctor said I probably do have it based on symptoms, the blood test, and my positive reaction to the glucose/hematin treatment. He said urine tests are more unreliable and I could've had a false negative. There's a definitive genetic test that can be done but it's 1850 dollars and its a research lab so they don't take insurance.

As for the carbs, I eat mostly whole foods, but the Dr. wants me to eat simple sugars as well. I'm not exactly sure why. I think I may try and find an AIP specialist and see what they think. Thanks for all the help and suggestions.

How about asking your doctor for a referral to a registered dietitian who can help you work out an appropriate food plan? None of us here are professionals and we can't give you advice on what to do given your medical condition.

Jay