I found out I have porphyria, I could use a bit of help with diet!

[jaqie]

OK... I have been disabled for a very long time, but my primary problem has finally been identified as porphyria, and I have begun a diet rich in carbs and sports drinks as is the standard treatment for such and have had an amazing recovery so far, but I want advice from folks used to health diets to help me further refine my diet.

http://www.porphyriafoundation...ut_por/diet/index.html
Here is more information on the diet-related aspects of it, but the short simple version is with the version of porphyria I have, I need to eat massive amounts of complex and simple carbs and drink lots of sports drinks (for electrolytes in them along with the simple carbs{sugars} et al), and a higher protien content is a good idea for the kind I have as well.

I found out about three weeks ago, so I made a massive change in my diet. So far, i have been eating (mainly) pork sausage sandwiches (with extra bread), chicken stir-fry (instant rice, chicken, soy sauce), spaghetti that I make from scratch including sauce (very low fat method I use, literally pressing the fat out of the meat before it goes in the sauce), pb&j sandwiches, and the like, and drinking lots of gatorade - and having apples and banannas and the like once in a while... I have had a flat-out amazing recovery from the symptoms that have plagued me since I have been 16 or so, and I want it to continue and possibly optimize the diet even more by talking to folks here about getting even better nutrients.

I am a 30 year old female that is 270 pounds, my optimum weight (calculated by me and a health professional) is 190-200 pounds (I am quite large framed), though I would like to get down to that, my primary concern is getting back into shape now that I can actually DO THINGS for the first time in over ten years and get into school this fall and then into the working world. My reproductive system was removed at a very early age due to an unrelated birth defect, and I take HRT as a matter of course to compensate.

As my diet has changed, my old diet doesn't really matter and this is totally new ground to me, I would like to know what the health-centric folks here use/eat/etc to get lots of carbs and protien so I will have more ways to get it into my system. I have read various threads here, and googled, but nothing specific really makes a lot of sense to me right now. My budget for food is quite low as I am still on disability ($650 a month, $400 of which goes to rent and utilities and $150 goes towards medicine and other needs, so I have ~$100 monthly budget for food). I have access to harris-teeter, CVS, and food lion right now.

And yes, I have talked to a dietician but they are less then useful IME telling me to buy things that would rocket my food budget to $300+ per month...

Thanks tons for reading this and thanks tons for helping!

 

[bobsmith1492]

Pasta pasta and fruit juice! That's what live on and what it sounds like you need. You can get Pasta Roni for about 2 bucks a pop and they make for a great, easy, cheap meal with lots of good carbs. Follow up with some juice (apple is always cheap but not very nutritious; orange and grape are better, just mix it up and get some of each). These juices have lots of potassium which is the main electrolyte your body needs (other than salt) plus simple fructose (plant sugars).

 

[jaqie]

Yeah, that's a good idea... I could definitely use some hamburger helper and such... that is pretty cheap when on sale esp if I buy the beef in bulk and fry/freeze ground beef ahead of time, and noodles&sauce (pasta roni and other brands) would work quite well too...I forgot about those and used to eat them a lot, some store brands barely cost over $1 a package... even with tuna this would be great! Buying some canned peas to put into some noodle and sauce packets, along with a bit of tuna, would make a more balanced diet too.

As for juice, that's too expensive... I have to drink more of that to get the same effect as a smaller amount of gatorade, but I love fruit juice (especially juicy juice) so I get that as a treat when I can afford it.

You gave me some really good ideas, thanks!

~edit~
I need to get a bread maker... and possibly start buying crescent roll packets to make them, always loved those, and bread has a lot of what I need, too...hm.

 

[SociallyChallenged]

Some good complex carb sources:

Oatmeal (Old fashioned, Quick oats, Irish steal cut)
Sweet Potatoes, Yams
Beans (Black eyed, Pinto, Red, Kidney, Black)
Oat Bran Cereal, Grape nuts, Rye cereal, Multi grain hot cereal
Farin (Cream of wheat)
Whole Wheat frozen Bagels, Pitas
Whole wheat or Spinach Pasta, Whey Pasta
Rice (Brown, white, jasmin, basmiti, arborio, wild)
Potatoes (red, white, baking).

I took this as part of a list from a different thread. In eating these though, make sure you're not above 50g a day in fiber as the website says unless you're taking in a higher amount of vitamins. I don't know why, but that's what the website says so I'm going by that to give you advice Good simple carbs consists of fruits and fruit juices mainly. I understand you need a lot of electrolytes, but isn't there a better source than sports drinks? Sports drinks, unless you are active, aren't very healthy for you because they contain a ton of processed sugar or high fructose corn syrup. You should ask your doctor about that. Other than that, I'm glad to hear that you're feeling better now that you found out and are dealing with the porphyria.

 

[jaqie]

Thanks for the list
No, the low fiber reco was for a different version of porphyria then I have, that issue does not effect me.
Actually, to get around the whole heme problem, taking in extra sugars is a *GOOD* thing for me, as the very issue with porphyria is that most protien is just passed through my body without being processed into sugars for the direct usage in cells. The reason for the extremely high complex carbs is that that reduces the extreme overproduction of heme precursors causing the painful symptoms and attacks - the sugars and electrolytes are for my body to use directly as fuel since I cannot get most of it from protien... the reason to increase protien intake is to give the heme that does work properly (very small percentage) more to work on and thus more proper nutrients for my body.

Thanks a lot for the advice and the "glad to hear you're doing better"

 

[SociallyChallenged]

Originally posted by: jaqie
Thanks for the list
No, the low fiber reco was for a different version of porphyria then I have, that issue does not effect me.
Actually, to get around the whole heme problem, taking in extra sugars is a *GOOD* thing for me, as the very issue with porphyria is that most protien is just passed through my body without being processed into sugars for the direct usage in cells. The reason for the extremely high complex carbs is that that reduces the extreme overproduction of heme precursors causing the painful symptoms and attacks - the sugars and electrolytes are for my body to use directly as fuel since I cannot get most of it from protien... the reason to increase protien intake is to give the heme that does work properly (very small percentage) more to work on and thus more proper nutrients for my body.

Thanks a lot for the advice and the "glad to hear you're doing better"

Really? Protein isn't exactly supposed to be processed into sugar for cell use. It's supposed to be used directly to rebuild enzymes/muscles/etc in the body. It's only converted to sugar if there's too much or it doesn't have any other use. Hm, this is an interesting condition. I've never had much experience with it. So, in essence, your body can't process protein efficiently. Why doesn't the treatment for porphyria utilize both carbs and good fats? Good fats won't damage anything and will actually supply a more constant food source while it's being digested. The simple carbs will actually promote fat storage if they're not all used. Interesting. I'll try to read up on it a little bit more.

 

[jaqie]

I'll be completely honest: I have *NO* clue.
I just know what I was told and what I read about it, and what makes me feel better.

Basically, as I understand it, the whole problem is the heme precursors are made in superhigh toxic levels and don't hardly ever self-assemble into the protien-eating heme, and that is the heart of the whole problem.

~edit~
check out lauren warren's story for a good starting point / view from the inside. she describes it much better then I ever could.

 

[Matilda]

hi - i don't know too much about your problem, but i am a member of these health forums (http://communities.healia.com) where you can join communities with people who have similar issues as you, or where you can ask doctors for advice. thought it might help. good luck.. i wish i could eat all those carbs!

 

[bobsmith1492]

Honestly apple juice is much cheaper than Gatorade, around here anyway (in Michigan the state supermarket chain gets local not-from-concentrate apple juice for super cheap, some 1.50 per half-gallon). I'd agree with SC to try for fruit juice as opposed to sports drinks. If you're closer to Florida or Cali maybe orange juice would be cheap, or grape juice.

Make sure you go for REAL juice (straight-up grape, orange, or apple, from concentrate is fine) as opposed to Juicy-Juice and similar. Check the ingredients; you'd be surprised but a lot of juice drinks have just a small amount of concentrated something-juice to give it its name and then concentrated apple or pear juice for sugar - or just lots of corn syrup. I'd avoid those.

 

[jaqie]

juicy juice is 100% juice, that's one of the reasons I like it, and yes, it's all juice, I checked. that's one of their selling points, as well "100% juice for 100% kids". I like thier punch best, though it is mostly apple juice, it has some others in it, and it's so good! (I found out I always tended to crave the things that I needed to treat porphyria, but thought too much of it was bad for me so I tried to avoid excess carbs and such, odd how it turns out I was doing more harm then good)
I live on the east coast, near raleigh, NC.
Thanks tons to everyone for all the helpful advice and all
And yes, Matilda, I love being able to eat so much food I love, LOL!

 

[jaqie]

Whew, I got my junkyard-built bike out and took it to the bike shop, bought a bike pump, and rode the bike for about a mile today. Not near as much as the 20-40 miles a day I used to ride before this hit me, but I'm definitely on the way to recovery! I am so excited! and so tired and sore...LOL!

 

[SociallyChallenged]

Originally posted by: jaqie
Whew, I got my junkyard-built bike out and took it to the bike shop, bought a bike pump, and rode the bike for about a mile today. Not near as much as the 20-40 miles a day I used to ride before this hit me, but I'm definitely on the way to recovery! I am so excited! and so tired and sore...LOL!

That is awesome - a great start for the journey ahead of ya. Don't let it get your worn down though. If you start to feel like you need a random day off, take it off; but be sure to be honest with yourself Don't take days off for no reason and such. Again, way to get back on the road.

 

[jaqie]

Thanks!
Yeah, I have been taking the rests I need when I need them. I am not about to risk losing this incredible break over doing something stupid. The reason I waited so long for fixing the bike is simple, a tire was losing air and I didn't have the money to buy a good, reliable pump and new tube till today, or I would actually have had it done about three weeks ago.

You mentioned my disorder piquing your interest, and wanting to do more homework on it. Did you find anything interesting?

 

[SociallyChallenged]

Originally posted by: jaqie
Thanks!
Yeah, I have been taking the rests I need when I need them. I am not about to risk losing this incredible break over doing something stupid. The reason I waited so long for fixing the bike is simple, a tire was losing air and I didn't have the money to buy a good, reliable pump and new tube till today, or I would actually have had it done about three weeks ago.

You mentioned my disorder piquing your interest, and wanting to do more homework on it. Did you find anything interesting?

Well, I discovered that heme is a molecule/protein that has several functions. The one that jumped out at me is that it is involved in electron transfer. In your body, something called the electron transport chain (ETC) is utilized to create energy (ATP). The process of the ETC occurs in the mitochondria of the cells. These are the "power houses" or energy producing units of the body. With a deficiency in heme, I believe the electron transport chain is hindered, which reduces the output of energy from the mitochondria. The ETC is part of the processes that yields most of the usable energy in your body. This is why you have to take in so many carbs for near-instant energy. That's interesting to me. The question I don't understand is why it causes such extreme pain. I will try to research it a bit better, but I thought I'd update you with what I learned since you asked

 

[jaqie]

thank you, very interesting and something I did not know personally.

I saw a mystery diagnosis episode on it recently, and in that they said the pain is due to the toxic levels of heme precursors in the body directly causing pain from its overpopulous presence and also from it causing havoc in the nervous system - which makes much more sense with the information you just supplied.

 

[IceBergSLiM]

Any health professional that advised that 190 was a healthy weight for any woman under 6'2" should have their liscence revoked.

On topic....good luck with your issues.

 

[irishScott]

http://www.nutritiondata.com/f...00000000000000-1w.html
You'll probably want to use the categories at the top to narrow the search to actual food (as opposed to pure sugar )

The site in general is awesome, lots of details on lots of different (and a lot of obscure) foods.

Glad to hear you're recovering well. Hope the streak continues!

 

[jaqie]

Originally posted by: IcebergSlim
Any health professional that advised that 190 was a healthy weight for any woman under 6'2" should have their liscence revoked.

um dude... I *AM* 6'2".

 

[jaqie]

Originally posted by: irishScott
http://www.nutritiondata.com/f...00000000000000-1w.html

That site looks good, thanks!
Holy crow. Back when I was little I ate tons of the very top cold cereals listed in that... no wonder this didn't hit me till I turned 16 or so, I stopped eating tons of carbs daily.

 

[IceBergSLiM]

Originally posted by: jaqie

Originally posted by: IcebergSlim
Any health professional that advised that 190 was a healthy weight for any woman under 6'2" should have their liscence revoked.

um dude... I *AM* 6'2".

well thats really uncommon. :shocked:

 

[jaqie]

I know. I don't really like it but there's nothing to do about it. I used to know a woman where I grew up that was 7'1", worked at Hardee's with her a few months back when I was 18 or so (before this hit me so hard I couldn't work at all), she was thin as a stick but she had to hunker down over everything I was so sure she would end up with a permanent hunch-back, poor woman... She was nice and didn't seem to let her height bother her, so Ive tried to mimic that.

Ive been out in the sun so much that I actually had to buy some sunscreen, Ive already got a half a farmer's tan. That's something I hadn't thought of until I went out Monday and noticed my itchy red arms...been years since I could be out and about enough to get that. All sorts of things when I am out remind me of over ten years ago when I actually could go out and do things... feels odd, but very good, feels in a way like I was thrown into a time machine back to when I was ~16.