porphyria and foods

I always have reacted to these foods.

Acute Intermittent Porphyriai and Nutrition


EAT THE FOLLOWING:


To help ward of attacks and reduce their severity:


  • Consume at least 300mg of carbohydrates daily.

  • Eat some carbohydrates every three hours. The largest amount of carbohydrate intake should occur upon waking after overnight sleep.

  • Fiber intake should be about 40 grams per day. Foods high in soluble fiber are varied. Such foods include rice bran, oat bran, oatmeal, beans, peas, barley, citrus fruits, strawberries and apple pulp.

  • On a daily basis, most of your diet should consist of carbohydrates (50% or more), some protein (about 15-20%) and fat (less than 30%).


AVOID THE FOLLOWING:
  • Limit dietary cholesteroli. To accomplish this goal, limit or avoid concentrated sources such as organ meats, egg yolks and whole-milk products (cheese, butter.) Of course, for porphyria patients, it is best to avoid such products because often these products contain triggering elements such as steroids, sulfur, and chemical toxins.

  • Be sure to keep the saturated fats to a minimum. The fats from meat, egg yolks, milk, and milk products (butter and cheese) are the main sources of saturated fats in most diets.

  • Avoid processed grain products, such as cookies, cakes, muffins, and pastries, because these usually contain saturated fats.

  • Avoid chamomile containing foods. Acute porphyria patients are known to have sensitive reactions to chamomile.

  • Avoid Porphyrenogenic foods, which contain chemicals that stimulate hemei synthesis. These include: cabbage, red plums, red grapes, red/purple grape juice, and purple prunes.

  • Tomatoes contain sulphur and should be avoided since sulphur is a trigger.

  • Acute porphyria patients should avoid soy products. Soy contains phytoestrogens. Soy is a natural estrogen and therefore considered a trigger of heme synthesis.

  • High fructose corn syrup is often used in soda pop and sports drinks and should be avoided by porphyria patients. Ingestion of high fructose corn syrup causes a close down of normal metabolism function which needs to be avoided by acute porphyria patients. When fructose reaches the liver,the liver goes bananas and stops everything else to metabolize the fructose.



Table of Food Guidelines for Porphyria Patients

High-Fiber, High Glucose Foods

Avoid These Foods

apples

Saturated Fats & Cholesterol:

applesauce

cheese

baby food (fruit varieties)

cookies, cakes, muffins

bagels

eggs, particularly egg yolks

bananas

whole milk, cream, butter

blueberries

Foods that Stimulate Heme Synthesis:

cucumbers

cabbage

dates

chamomile tea

honey

char-broiled meats

Jell-o

red/purple grape juice

Kool-Aid (made with sugar)

red/purple grapes

low-fat milk

red plums

oat meal, oat bran

prunes

orange juice

soybeans, soybean oil, soy protein

pasta

Foods containing Sulphur/Sulphites

peaches

broccoli

pears

catsup, tomato sauce, tomato paste

Pedialyte

dried fruit

pineapple juice

lemon and lime juice

raisin bran cereal

molasses

potatoes

mustard

rice

raw onion

squash, zucchini

tomatoes

strawberries

turnips

sweet potatoes


watermelon


whole wheat bread


Very interesting! Some surprises there, too (Jello, red plums). At least chocolate's not on either list, yay!

Could you give a source for the data, please?

Ron

On Stratton protocol for CFSi starting 01/06 (NE Ohio, USA).

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Interesting, thanks for posting this.  I would observe it's similiarities to the BBD (best bet diet) though there are differences.  The BBD tries to eliminate foods that are the most common foods people develop allergies towards, as well as others such as red meat due to the saturated fat content.  Some on the BBD eat red meat if it's grass-fed rather than grain-fed.  I do not however.

A brief summary of the BBD can be boiled down to this:  Avoid red meat and eggs, no dairy, no glutenous grains, no beans or legumes, and no refined sugar.  I may have missed something, but that's the gist of it, which as you can see from comparing what's posted above, are in line mostly, though not entirely.  I think the BBD works for people with MSi because it mitigates porphyriai in many who follow it, as it has for me, though not entirely.   If interested, read my last blog entry for links to sites where you can find more info on the BBD.

all my best

John

RRMSi/EDSSi 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazolei) since 04/12/2006

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John it is an interesting parallel you draw there with the porphyrins and the BBD. I did it for some time long ago (I've had MSi since 91) but eventually realized I was getting worse and not enjoying my food at the same time.

the BBBi was clearly started by the Macdougall experience (but I think he had Gluten Ataxia which was unknown at the time and of course did much much better gluten free just as people with GA today would be given a gf diet).
The later BBD advocates, most notably A. Embry and his son with MS, who noted a difference on a gluten free diet began to look for explanations as to why that was so and thus created several interesting and only anecdotally supported theories for MS development .
My favorite one of these is noting that in epidemiological studies inland people have higher incidences of MS than coastal people, then concluding from that scant statistical data that it is because they live in the heart of milk and grain country thus their milk and wheat heavy diets are to blame.
Ummmm wait a minute. I live on the coast and I also grew up on an inland farm. You do not go out in the field and pick wheat grain and eat it every day if you live inland. You go to the grocery and buy wonder bread and Darigold milk just like people on the coast do. In what modern world is it true that food does not migrate from inland areas to coastal areas? The diets of inland people do not vary much from coastal diets with one exception: fish in coastal communities is fresh and reasonable and often nasty and "fishy" inland. I do believe it is possible that coastal people eat more fish and therefore may get more vitamin d, but it could also maybe more plausibly be that inland people have more MS because they are exposed to more toxins (farms are very toxic ever see a crop duster? how'd you like to live where they do that?)or it may possibly be that the air at the coast is cleaner and less allergenic thus less sensitizing the person's immune system, or any factor at all since mere number of people diagnosed in an area does not suggest any kind of specific causality.
Furthermore in the nurses study researchers took time to evaluate diets of MS people predevelopment to see what was a risk factor. Gluten ? Nope. Whole grains were associated with a reduced incidence, not more (there goes the paleolithic angle too) BUT
refined sugar and processed foods were associated with higher risk though-porphyrins again there.

I have noted that many of these "other MS angles" when investigated from the paradigm here begin to fit...more smoking guns so to speak. Thank you for showing the anti porphyric angle to the BBD approach.
marie

On CAPi since Sept '05 for MS, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Can I just say something completely anecdotal here, whilst taking a break from writing a letter in French?  When I had only recently met David, we went on a trip to Devon and Cornwall, partly for DW to meet my mother, who at the time lived down there.  We drove up to Dartmoor to stay for a couple of days and stopped in Moretonhampstead to buy supplies.  We thought a small town right on top of Dartmoor was sure to have a good supply of local produce.  Not a bit of it.  White wodge bread, long life milk and not a free range egg in sight.  The butchers was the most appallingly smelly place I have ever come across and all the vegetables were frozen.  Fruit was a few brown bananas and some equally past their best apples.  Most people there must surely buy their food from the local hypermarket, as they do in the coastal towns.  Crop dusting must surely be a major culprit more so than variation of diet these days, which is why songbirds are in such steep decline.  Earlier today I posted this abstract from PubMed about the incidence of MSi in Japan: http://tinyurl.com/hsrrg< Things have changed a lot there since 1960......Sarah

 

Started the Wheldon regime in August 2003, due to very aggressive SPMSi.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSSi was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Like Marie, Ella followed the BBD for over a year and it did nothing to improve her condition and made her feel miserable for having to cut out so many of the foods she liked to eat.    We have always followed a sensible diet, low on junk food, high on homecooked wholefood, fish, fruit and vegetables, so it is difficult for me to see food as a culprit in her condition.

The reasons why she and not others in our small family have MSi still has to be explained, and I suppose that diet/gut health may have a role to play in such an explanations, but also maybe some genetic disposition towards it.   I'll wait and see what those cleverer than I in this area of expertise come up with, in the mean time we are doing something about treating a causative agent and making a difference without having to deprive her of some pleasure of good food.

She now follows a sensible diet which cuts dairy down to a minimum, because it makes her feel better... 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMSi<

Sussex, UK

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

First, I want to make it clear that I'm not proposing the BBD approach as the solution to MSi.  That was a theory that I followed for the five years immediately before I found out about the research on Cpni and it's tie to MS, and other conditions.

However, I do want to respond to one thing in your post Marie.  You wrote "Furthermore in the nurses study researchers took time to evaluate diets of MS people predevelopment to see what was a risk factor. Gluten ? Nope. Whole grains were associated with a reduced incidence, not more (there goes the paleolithic angle too)" which may be true of the Nurse's study; however, it isn't true of the general epidemiology of MS which shows that intake of glutenous grains correlates with a higher incidence of MS, not lower.  I would theorize that the epidemiology would be based on a much larger population than the nurse's study as it's worldwide.  So aside from that, it is also one of the groups of commonly eaten food that people develop food allergies towards, e.g. Celiac's disease for instance.  Just not something I choose to ask my body to wrestle with while fighting off MS / Cpn., there are plenty of alternative grains.

Before I had an EL1SA test done, I had no idea what food allergies I have.  I was a BIG consumer of dairy and it turned out that I am massively allergic to dairy.  My body somehow was compensating for the allergy, so I didn't even know.  Avoiding foods that promote food allergy is just one of those areas that I can manage which help my general health.  It's completely coincidental that BBD and an anti-porphyriai diet are very much in line with one another, and probably the reason why some people with MS benefit from following it.

all my best

John

RRMSi/EDSSi 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazolei) since 04/12/2006

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

HIGH FIBRE is difficult to acheive but important (especially for MSi people who often have slow guts).  I use Golden Linseed (50g with OJ for breakfast) this gives lots of fibre and it keeps me moving. 

Mark Walker - Oxford, England.
RRMSi since 91, Dxi 97, CFSi Jan03.  Patient of David Wheldoni Feb06, started CAPi Mar06. Pharmaceutical Consultant (until I stopped working in Jan03).

Mark Walker - Oxford, England.

RRMSi Nov 91, Dxi 97. CFSi Jan03. Copaxone + continuous CAPi (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.

Opinion:  I don't think gluten, dairy, and other foods cause MSi.  I think those allergies develop as part of the larger picture of many things that happen to a person who also gets MS or some other inflammatory illness.  I believe they certainly exacerbate and add to MS progression, but I think they are incidental to the gut becoming permeable and the immunei system going off kilter.  Could this state of affairs be initiated by infectionsi that never quite go away leading to glutathione depletion leading to more infections and many other problems?  I think so!

Cypriane~~~MS and GA caregiver and care advocate - Dallas

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

John
I did not mean to imply that it was bad to use the BBD or that it could not help. Please know that I too have had allergy tests on the food I eat (I've had MSi for many years) and am allergic to many things. Like you, dairy is bad for me on many levels. I also did the BBD for about 5 years, but one of the very few foods I am not allergic to is beans; doesn't work well with BBD and it did not actually help me to eat that way. I know some who swear by it and some who found it not to be helpful as I did. I personaly think some people on that site actually had gluten ataxia and were misdiagnosed as having MS. They were of course profoundly positively impacted by eating gluten free and were cured by eating gluten free.

John said
however, it isn't true of the general epidemiology of MS which shows that intake of glutenous grains correlates with a higher incidence of MS, not lower." please do reference this, I'd like to read it.
I have never seen a study that correlates glutenous grain to MS but could certainly have missed it.
blessings!
marie

On CAPi since Sept '05 for MS, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

 Just to add more fuel to the fire, I thought it would be interesting to mention that 70% of people who are allergic to COW milk have no reaction at all to goat milk.  Probably the other 30% are lactose intolerant.  As for "long-life", I love my fresh, raw goat milk, which is comparable to standing in the garden eating fresh, raw veggies.

Rica        EDSSi 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Marie                                

First, I didn't say that there was a study that correlates glutenous grain to MSi, but that the epidemiology of MS is such that incidence of MS is higher in populations that are glutenous grain consuming.  Maybe my omission of the word "populations" was misleading but in general, the more glutenous grain a population consumes, the higher the incidence of MS.  This may or may not be a coincidence, I don't know, it's just what the epidemiology states.  This would be in line with MS being more prevalent in the northern hemisphere, western cultures than elsewhere in the world.

However, I think what you want to see is the actual epidemiological data.  I've been looking for one of the documents that's quoted by other's who have written about this but while it's listed on PubMed, it isn't available there and I haven't been able to find it available online.  The researcher who I find most often quoted is Shatin R.  There are others who have published data about the same subject but again, they aren't availble through PubMed, though listed.

On a tangent note.  Why would glutenous grains have any role, if any, in the occurrence of MS?  Well, there has been some research work into the affect gluten has on vitamin Di absorbtion.  From the work that has been done, it has been shown that consumption of gluten from wheat interferes with vitamin D absorbtion.  That work I can post a link on if you want to read it and I can find it.  Does it have significance?  I don't know, but a shortage of vitamin D might be part of the conditions that allow Cpni to get in and infect someone to begin with due to the cellular resistance to infection being thrown off without proper levels of vitamin D.  Vitamin D is an immunomodulator and has impact on the immunei system.

You can likely find many articles related to vitamin D and gluten on PubMed.  I did a quick search and found four pages, mostly in reference to Celiacs disease.  I read a few and it does show conclusively in those studies that when patients were taken off of glutenous grains, their levels of vitamin D went up, as did bone density.  But again, those aren't the study I was referencing and I will try to find and post a link to it. 

all my best

John

RRMSi/EDSSi 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazolei) since 04/12/2006

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Hi Rica                          

I think the factor in cows milk that breeds allergy is a protein such as whey or casein or some other protein I'm not recalling off-hand, which is why Goat's milk doesn't results in allergy as often.  Different animal, different proteins.  As I recall, Goat's milk is allowed on the BBD or I don't recall a specific exclusion of it. 

all my best

John

RRMSi/EDSSi 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazolei) since 04/12/2006

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John,  The BBD bans milk from goats and other animals as well.  Joyce

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Rifaximin vs celiac?! from celiac.com "And if it proves to be true that gluten-ingesting (gut) bacteria cause celiac disease, a similar mechanism involving bacteria and peptides from other proteins may be the root cause for many other autoimmune diseasesi. A whole class of autoimmune diseases might be cured by eliminating specific species of bacteria." Another study found that some celiac patients' intestines do not heal even after months on a gluten-free diet. "The SIBO (small intestinal bacterial overgrowth) patients were treated with rifaximin 800 mg/day for one week. All of the patients were re-evaluated one month after treatment, and all were symptom-free. The researchers conclude that SIBO affects most celiacs who have persistent gastrointestinal symptoms after going gluten-free." Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai- Currently: minocycline/Zithromycin, Tinidazole pulses

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Joyce               

I stand corrected, you're right.  I don't drink any milk of any kind so I've never looked into goats milk but don't remember any discussions on the BBD discussion page or mail list in the past about it, but I probably dismissed it since it's not something I'm going to undertake.  I double checked the msi-diet.org site and found it listing all animal milk.  Thanks for the correction! 

all my best

John

RRMSi/EDSSi 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazolei) since 04/12/2006

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Thanks John, but I wish I weren't right. 

Wow! Janice C,  That's fascinating information...looking into it.  Joyce

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

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