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Specific Carbohydrate Diet (SCD)


AliB

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GermanMia Newbie
I have a question.

I would like to explore making my own dry curd cottage cheese from raw cow's milk. There are simple recipes on the internet for "farmer's cheese" that are similar to panir. Basically heat milk to a boil, add lemon juice, strain out the curds.

Does anyone know if this is SCD legal? How do commercial dairies make DCC?

Hi pele,

curd here in Germany is a very common diary, so I use to buy normal curd and then ferment the curd for 24 hours. I just mix it with one cup starter-yoghurt and leave it in the yoghurt maker for 24 hours. It always turns out delicious. So why shouldn't you make curd and then ferment it?

Mia

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AliB Enthusiast
Hi pele,

curd here in Germany is a very common diary, so I use to buy normal curd and then ferment the curd for 24 hours. I just mix it with one cup starter-yoghurt and leave it in the yoghurt maker for 24 hours. It always turns out delicious. So why shouldn't you make curd and then ferment it?

Mia

'Good thinking, Batman'!! (Sorry Mia, that might be lost on you - from the old 'Batman & Robin' series on UK/USA TV).

We just tend to think of fermenting the milk from the start when it is liquid, but fermenting the cheese could be an option. Hmm, wonder if you could do the same with ordinary cottage cheese? Might need to break the curds up so that the bacteria can get right through it.

I managed to pick up some DCCC a few days ago (I used to buy it years ago but it is very hard to get hold of here in the UK now). Trouble is it is in a huge tub. I was wondering if it would freeze and whether that would destroy the benefit of it in any way. It would be a lot easier if I could just get a small pot of it out as I need it. Any thoughts on that one?

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mslee Apprentice

thank you pele & ali

When I first went gluten free came here, researched, & learned so much the theories behind the paleo diet & SCD made so much sense!

As primates it makes perfect sense that a diet based heavily on grains would not be necessary or even healthy for us. That grains became a mainstream part of the human diet as a filler to satisfy our mass reproduction.

I can tell I was low in B12 not only from the blood work, the improvement from supplementation, but in the amount of meat I crave. I was vegetarian for 10 years when I was younger but it got to the point my body "told" me it needed meat. It's funny I strongly crave all those other foods you listed that have B's....I eat lots of greens at least once a day every day!

I guess the problem is I took my Mainstream Doctors advice (against my better judgment) & saw a Mainstream Dietitian (Head dietitian of the local hospital by the way) so I ended up with mainstream info...which celiac & lupus are not really understood by mainstream medicine...so there ya go.

Just wanted to get some input from people actually going through this.

I can tell I feel better not eating grains then eating them, it would have been easier just to stick with it...now I'm gonna miss my rice & buckwheat :P

Ali, I quit most sugar long ago...although have slacked a little lately...it wont be too hard to cut out again. 100% juice & honey are ok right?

I will make sure I have resources when I finally jump in...think getting out of the moldy house is a good idea first.

thanks again!

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mslee Apprentice

ooo!

is hard apple cider legal???

probably not...but the one I like contains:

fermented apple juice,apple concentrate, malic acid,sulfite

thanks!

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fig girl Rookie
Hi fig girl,

first I thought I could tolerate ripe bananas and avocados because they don't cause bloating. But then I became aware that it's not only the gastro intestinal symptoms but quite a range of other symptoms, too, which might be caused by histamine. Now I found out that I can tolerate tiny amounts of avocados at once, about 1/8 avocado per day. But no bananas. If you can tolerate carrots, asparagus and green beans, you probably have no issue with fructose. But on the other hand, fructose malabsorption also doesn't necessarily show typical gastro intestinal symptoms. If I take too much fructose (which would be more than 2 gram per day!) I am only slightly bloated but get muscle cramps and muscle pain in the legs, hypoglycemia, more fatigue than usual, dizziness and headaches.

Bananas, avocado, all citrus fruits and spinach are critical with histamine, so if you don't feel any symptoms such as gastro intestinal problems, itching, flushes (red hot face), low blood pressure, hypoglycemia, fatigue and weakness, maybe histamie is not a big problem for you.

I don't know how it is in the US, but here gastroenterologists are covered under insurance and you can have fructose malabsorption breathe test and histamine blood test there.

Thanks so much for the helpful information Mia. I really appreciate it and it was very helpful. I don't think i have a problem with histamine or have fructose intolerance since i'm able to eat carrots, bananas, avocado, asparagus and green beans. Once my stomach settles down from eating the pork tenderloin i'll try a little spinach again just to make sure but i think it hasn't bothered me in the past, cooked or raw.

Today is 6 mths. being on SCD for me and I've been very strict eating only legal foods (in the first week or so i was still eating some raw foods and peanut butter but quickly learned i had to do the intro. for a long time). I sometimes think I should be eating more SCD legal foods at 6 mths. I just wonder if there's something i'm missing that i need to be taking care of. Thanks for letting me know that gastroenterologists can perform these tests. I may ask my Gastro. when i see him this year if I'm still having problems (i'm due for my colonoscopy this year - i have to have one every 3 yrs. since my first one they found a pretty large polyp that was the kind that can turn in to cancer over time - i can't think of the name right now).

I'm sorry that you've had so many problems but I'm glad you know now a lot of what is going on. Sounds like you have great Dr's too. Thanks again! :)

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fig girl Rookie
Hi Fig Girl,

Thanks

- I'll try out the 50-60 minutes chicken breasts and see if they work better for me.

Jan

Hi Jan,

I hope that it helps you. They weren't as tender this way but I may have let them boil a little too long before turning them down to just kind of poach but they were good.

I may need some anti-fungals so if I can become brave enough i'll try the garlic and olive oil. I tried a little kiwi on Wed. and it gave me gas and a rumbly tummy so i'll hold off on that for a while.

I feel like a big dummy, on my previous post to you I mentioned I'd never heard of pine apples....i'm pretty sure you meant pineapples! :lol: I had a big brain fog moment to say the least! I for some crazy reason was thinking you were talking about a type of apple like gala, granny smith, etc. Gosh, i feel so silly! :P

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pele Rookie
As primates it makes perfect sense that a diet based heavily on grains would not be necessary or even healthy for us. That grains became a mainstream part of the human diet as a filler to satisfy our mass reproduction.

This is exactly right. We need grain for wealth, not health. Sorry if I sounded crabby yesterday, I didn't mean to.

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pele Rookie
I found the following 'homemade' recipe if it of any use.

Open Original Shared Link

Thanks, Ali. I had no idea that cottage cheese was fermented. I made yogurt last week from raw milk and had no problem with it. I bought more raw milk today and it is cooling right now to make more yogurt. I plan to drain some for SCD cream cheese. I was also wondering about freezing some because I don't really want to eat a 1/2 gallon of yogurt before it spoils. I don't see why not, they do make frozen yogurt. Maybe I'll try making curdled cheese from yogurt.

Why not try freezing a small batch of DCCC and see what happens?

I suspect the stuff glued to my floor mat contains HF corn syrup and maybe xantham gum. In any case, I am very happy to be free of processed food substitutes.

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fig girl Rookie
Hey all! It's been a while since I've posted, or at least it seems like a while.

My wedding was last weekend, so now I'm officially a Missus. It was absolutely amazing! I allowed myself a bit more freedom with foods (still all gluten-free) and I had a gluten-free brownie, some gluten-free cider, a bit of fruit, etc. over the space of a few days. I was very cautious, and kept waiting for the gas, bloating, diarrhea that was SURE to occur...yet it never happened. In fact, I felt better than ever, and actually lost weight (my wedding dress ended up being slightly too big, I should have had the next smaller size!)

We returned home on Tuesday night, and since yesterday, my bowels have NOT been agreeing with me. It's been very confusing. Why did I feel so good when I was eating foods I can't normally have? Normally I'll get D about 12 hours after eating whatever it was that was problematic, so I don't think it was "leftover" food from my trip causing these issues. Could it be something where I live that makes me sick or aggravates my system?

What are your thoughts on this?

Congratulations Juli! :) I'm sorry you're having problems. I'm no help with what it could be but i agree with Ali that maybe it's just the baddies took a little longer since your flora had changed. I also wanted to thank you for posting on the SCD recipe thread the mock pumpkin danish - i can't eat pumpkin or egg but i kind of made my own version of mashing up well steamed carrots and banana and putting in the microwave for about 35 seconds to heat up. I sometimes put a pinch of salt - it's really good and i've been eating it for breakfast. I'm so limited on what i can eat and it gave me something new to eat for breakfast. Congratulations again on your wedding!

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fig girl Rookie
'Good thinking, Batman'!! (Sorry Mia, that might be lost on you - from the old 'Batman & Robin' series on UK/USA TV).

We just tend to think of fermenting the milk from the start when it is liquid, but fermenting the cheese could be an option. Hmm, wonder if you could do the same with ordinary cottage cheese? Might need to break the curds up so that the bacteria can get right through it.

I managed to pick up some DCCC a few days ago (I used to buy it years ago but it is very hard to get hold of here in the UK now). Trouble is it is in a huge tub. I was wondering if it would freeze and whether that would destroy the benefit of it in any way. It would be a lot easier if I could just get a small pot of it out as I need it. Any thoughts on that one?

Hi Ali,

I had read somewhere (but can't remember where) that you can freeze DCCC and I've frozen the Friendship brand DCCC and thawed it and it was fine. I think they even mentioned in some recipes it does better after frozen and thawed. I think on the package i had it said you can freeze it for up to 3 mths. Unfortunately i couldn't tolerate it the last time i tried. :(

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Ms Jan Rookie

Hi Fig girl,

don't worry about the 'pine-apples' - I actually just thought you meant it was about their specific digestive enzymes you hadn't heard ... but anyhow, brain fog is a real killer, I know that only too well. And then, being Danish I appologize that my spelling and grammar is sometimes a little odd ... ;)

As to anti-fungals, I've tried a lot. I think what works best depends on the specific strains of yeast/candida one has, so unfortunately it takes a bit of trial and error. but here's my personal experience: the pro-biotic blend Threelac worked extremely well to reduce and keep down the candida, but never cured it. Likewise golden seal worked great for systemic candida, but I've always had to keep taking it, so as not to regress. Grape fruit seed extract, wild oregano oil, and clove oil are great against mouth thrust - and actually also against glutening nausea/heaaches - and I use them periodically but without certain outcome as to intestinal candida. Pau d'arco seems to be good, but too weak to be sufficient in itself. Olive Leaf exract has worked very well, but also wasn't sufficient in itself (make sure the extract is not alcohol based). More recently I've started taking caprylic acid, and this time I feel I've hit upon the right thing for my strain of candida. I still take them, so I don't know if they can be considered a total lasting cure, but at least while I take them I feel great, so I might just continue doing so. They have also enabled me to cut out basically all the other antifungals, except the raw garlic that I still feel is the best offer nature has to us ...

Good luck !

Jan

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Ms Jan Rookie

Hi Julirama,

Congratulations on your wedding. :D

As to the delayed gut reaction to bad food, I think it stems from the bugs relishing the 'bad' foods when you first eat them after a long abstinence - thus momentarily leaving your body alone. Then, however, they procreate rapidly in the carbohydrates, and being now well fed they also start building up the toxins in your system. And at first you're on a kind of 'high' from the opiates created by the bugs digestion of the carbohydrates, then your system gets overloaded and you crash with all the toxins attacking you ... and the fight against the bugs have to start all over again .

Hope you get better.

Jan

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AliB Enthusiast

Well, the H. Pylori test came back negative (suprise, surprise), but I am still veering towards some kind of parasite being a problem.

The more I read about them the more I am suspecting that avenue. It seems that they would not normally be able to get a hold in a healthy gut. The intestinal mucous would stop them doing that and they would basically just go in one end and out the other.

But different factors - not least the rotten substances that pass for food these days and other things like certain drugs - antibiotics for instance, by destroying the good flora can undermine and erode the mucous giving the pathogens the opportunity to get their feet 'under the table'.

I read an article by a doctor in the States who reckons that 40% of the patients who come to her have parasites even though many have never been abroad and I am sure that the UK is no different.

Open Original Shared Link

I emailed the Hospital for Tropical Diseases in London last night to see if they could tell me of any comprehensive testing that is available on the NHS that I could pass on the info about to my Doctor.

I also pointed out to them that as their remit is to test for and investigate diseases contracted in the Tropics or by people who are moving in from abroad (which we have a copious and cpntinuous quantity of) maybe they need to change the name and the remit of the Hospital to the Hospital for Parasitical Disease as we are just as likely to pick them up here.

Our food is coming from all around the World, visitors come from all around the World but we have many 'home-grown' parasites that are largely ignored too. From what I can see, the NHS at present only seems to have the option of testing for a handful of different parasites like HP, Giardia, Cryptosporidia, etc., yet there are hundreds. Crazy.

What is interesting is that as I did a search of the net for herbal/natural parasite cleansing agents, many of the things that were recommended, like the goldenseal I have taken, garlic, pumpkin seeds, etc., were all items that I would react to. That got me wondering if in fact the reaction was the beasties chucking out toxins in response to the herbal antiheminthics and I am on the right track with the parasite thing.

I threw a load of goldenseal down my gut yesterday, took some Lapacho (Pau d'arco/Taheebo) tea, and swallowed more garlic and something was going on in my gut through the night - my legs were jumping around all over the place - a strong indicator that something was happening. Although tired now, I have had more energy today. As many parasites drain energy a long-term residency of the beggars could well be the reason why I have been so fatigued all my life!

I am researching Hulda Clark's protocol and am contemplating investing in a 'zapper'. Anyone tried one?

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chatycady Explorer
Hi fig girl,

first I thought I could tolerate ripe bananas and avocados because they don't cause bloating. But then I became aware that it's not only the gastro intestinal symptoms but quite a range of other symptoms, too, which might be caused by histamine. Now I found out that I can tolerate tiny amounts of avocados at once, about 1/8 avocado per day. But no bananas. If you can tolerate carrots, asparagus and green beans, you probably have no issue with fructose. But on the other hand, fructose malabsorption also doesn't necessarily show typical gastro intestinal symptoms. If I take too much fructose (which would be more than 2 gram per day!) I am only slightly bloated but get muscle cramps and muscle pain in the legs, hypoglycemia, more fatigue than usual, dizziness and headaches.

Bananas, avocado, all citrus fruits and spinach are critical with histamine, so if you don't feel any symptoms such as gastro intestinal problems, itching, flushes (red hot face), low blood pressure, hypoglycemia, fatigue and weakness, maybe histamie is not a big problem for you.

I don't know how it is in the US, but here gastroenterologists are covered under insurance and you can have fructose malabsorption breathe test and histamine blood test there.

I have trouble with banana, avocados and citrus fruits. Histamine? can you explain this to me? I get all those symptoms you talk about except for the itching. Any other foods that cause this?

What causes this reaction? Thanks!

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Ms Jan Rookie
Well, the H. Pylori test came back negative (suprise, surprise), but I am still veering towards some kind of parasite being a problem.

I also suspect that I carry around some parasites that worsens my condition - and like you, Ali, I also react strangely to some of those anti-parasitic herbs. Having lived for several years in Africa, I naturally suspected parasites already when I first fell sick, but tests came back negative. However, now I've been reading about how unreliable tests can be, and in particular to certain strains of parasites. But then, what does one do ?

As I understand it, the conventional medicines against parasites are very strain specific. But has anyone tried some reliable alternative cure that really gets those bastards out of the system ?

I also fear the strongyloides which someone was mentioning here a while ago, since I get those very itchy long lines/welts on different parts of my body - mostly legs, buttocks and stomach - that are described as one of the symptoms. They last a couple of hours, then vanish. It's nothing like other allergies or eczema. But much closer to the tracks of a larva migrans I once had in my leg (and yes that's as disgusting as it sounds: a worm living inside the skin on the leg!)

Anyone here with experience with strongyloides, or parasites in general - and any good advices ?

Jan

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AliB Enthusiast

Sherry (mftnchn) posted a bit on this thread a page or two back where she said her 'doc' had picked up Strongyloides and she is just going through treatment for it so you could try PM'ing her to see how she is getting on with it. She has also been treated for other parasites. She doesn't post on here very often now so PM might be the best way to contact her.

I don't get those welts, but I do get a general malaise and the feeling that there is something living down there that shouldn't be. I am pretty sure the diabetes is linked to it somehow too.

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julirama723 Contributor

Thanks for your replies and your words of congratulations!

How long should it take for the nasties in my gut to react?

It seems like no matter how long I'm gone from home, I do well, UNTIL I return home. We went on vacation this summer and I felt pretty darn good for the 2 weeks we were away, but a couple days after I got home, BAM I felt like the same old me. And for this wedding, we were gone a week, same thing; felt great while I was away and BAM a couple days after our return, GI problems.

I really don't know what to think about it all. The way I was eating for that wedding week is not how I eat all the time, though it was not unhealthy. (I still ate plenty of vegetables and fresh foods, nothing preserved or pre-made.) I'm back to my normal "diet" for the most part.

I'm not sure which answer I'd like to be the cause--the nasties in my gut reacting, or something where I live is making me feel cruddy...

----------

Oh and you're welcome for the pumpkin mock danish recipe! It's a very basic recipe that can be modified to suit anyones dietary tastes or needs. I hadn't thought of carrots and banana, that sounds delicious!

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wschmucks Contributor

I LOVE the pumpkin mock danish too-- I make it with banana's or apples with cinnamin (I'm trying peaches today) too because the pumpkin can be hard to get fresh. This is my new favorite thing!

I had a quick question: I was reading the Raman's cook book that raspberries are not to be eaten until 3 months into the diet/ symptoms subside. Now I was wondering if anyone knows if that is because of the seeds, or from the sugar? I REALLY wanted to make a raspberry frosting for my birthday cake (on Wednesday :-) I'll be 25) and was so sad when I read that. Any thoughts? I was going to remove the seeds with a cheese cloth, because I wouldnt even dream of eating all those seeds. Do you guys think it would be ok without the seeds?

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rinne Apprentice
.....

I am researching Hulda Clark's protocol and am contemplating investing in a 'zapper'. Anyone tried one?

I am curious.

I think it is the seeds in the raspberries that are the main problem but that is just my experience.

I am not posting so much, computer woes and working are the main reasons but glad to see this thread always. :)

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fig girl Rookie
Hi Fig girl,

don't worry about the 'pine-apples' - I actually just thought you meant it was about their specific digestive enzymes you hadn't heard ... but anyhow, brain fog is a real killer, I know that only too well. And then, being Danish I appologize that my spelling and grammar is sometimes a little odd ... ;)

As to anti-fungals, I've tried a lot. I think what works best depends on the specific strains of yeast/candida one has, so unfortunately it takes a bit of trial and error. but here's my personal experience: the pro-biotic blend Threelac worked extremely well to reduce and keep down the candida, but never cured it. Likewise golden seal worked great for systemic candida, but I've always had to keep taking it, so as not to regress. Grape fruit seed extract, wild oregano oil, and clove oil are great against mouth thrust - and actually also against glutening nausea/heaaches - and I use them periodically but without certain outcome as to intestinal candida. Pau d'arco seems to be good, but too weak to be sufficient in itself. Olive Leaf exract has worked very well, but also wasn't sufficient in itself (make sure the extract is not alcohol based). More recently I've started taking caprylic acid, and this time I feel I've hit upon the right thing for my strain of candida. I still take them, so I don't know if they can be considered a total lasting cure, but at least while I take them I feel great, so I might just continue doing so. They have also enabled me to cut out basically all the other antifungals, except the raw garlic that I still feel is the best offer nature has to us ...

Good luck !

Jan

Thanks so much Jan for the very helpful information! I have some grape fruit seed extract that i may try next. Last Sat. i juiced carrots with 1/2 clove of garlic (@ 4 oz) and i diluted it with water and drank it after eating lunch. Later that evening my tummy was rumbling and i had some pain and gas. I had a little of the same Sun. too but i do think i had a little more energy. I wonder if it stirred up the bugs too. I can't do the garlic during the week and go to work (no one would come near me!) :lol: I may try the Grape fruit seed extract but if it does the same is it good to continue i wonder? Maybe i'll start with very little of it and if it does ok just do very little and slowly work up to a little more. Jan - I'm glad the caprylic acid is working for you. Your grammar and spelling are excellent....it was definitely just a moment of fog for me! :D

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fig girl Rookie
I LOVE the pumpkin mock danish too-- I make it with banana's or apples with cinnamin (I'm trying peaches today) too because the pumpkin can be hard to get fresh. This is my new favorite thing!

I had a quick question: I was reading the Raman's cook book that raspberries are not to be eaten until 3 months into the diet/ symptoms subside. Now I was wondering if anyone knows if that is because of the seeds, or from the sugar? I REALLY wanted to make a raspberry frosting for my birthday cake (on Wednesday :-) I'll be 25) and was so sad when I read that. Any thoughts? I was going to remove the seeds with a cheese cloth, because I wouldnt even dream of eating all those seeds. Do you guys think it would be ok without the seeds?

Whitney - It's my new favorite thing too! I look forward to it every morning. Oooh, peaches sounds really good too!

Juli - I wasn't sure about carrots and banana together but those 2 foods i can tolerate and i thought the carrots replaces the pumpkin and the banana can replace the egg so i tried it and i loved it!

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fig girl Rookie
I am curious.

I think it is the seeds in the raspberries that are the main problem but that is just my experience.

I am not posting so much, computer woes and working are the main reasons but glad to see this thread always. :)

Rinne - sorry you're having computer woes but good to see you. I found some organic ginger and will be trying it soon...i sure hope it agrees with me. I just love ginger and miss it!

Whitney - forgot to mention in my previous post but i would think it's the seeds too so hopefully you'll ge able to eat them.

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wschmucks Contributor

OK! I am straining the raspberries as we speak and will make the frosting to go on the 14 date cake (which looks really good), for my birthday tomorrow :-)

I have been feeling....alright latley. I am coming up on 6 weeks on the diet now and am not really sure how im feeling. I wouldnt say the diet is helping with my C and I have had to increase my laxatives. I read an article by a Dr who has used this diet to help with D and he mentions C and that he had patients do water enemas every day in place of laxatives. He mentioned that since the laxatives irratate, even if you arent constipated you feel constipated (which I totally agree with). He said that with some adults they would have to adhere to the water enemas for a few months and eventually the BM would return. It makes sense to an extent, I'm just worried about it removing any good bacteria. I think I will try it once I get settled in France (and have my own bathroom :-)). I could be the case study for the site- lol.

I also am wondering about a few things #1- the nuts. I am adding different things at different times because my problems IS C and not D, so acidic food ive added (i have low acidity-- by PH test), and im wondering about the nuts in butter form. Ive been catious, but might try increasing from just my morning muffin. #2- I think it takes longer to heal C than D so the book says to say on diet for 1 month and if you dont feel better the diet probably wont help. How do i proceed in that arena...??? I was going to wait a until 2 or 3 months an re-evaluate, its just so hard cause there are so few people with my symptoms and the diet was designged for treating D. Any thoughts on any of the above would be great.

Thanks for all your help!

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AliB Enthusiast

I am plugging my way through Hulda Clark's 'The cure for all diseases'. I found a .pdf version that was a free download. It is an eye-opener. Whilst I feel that there certainly is a lot of credence in her protocols certainly diet plays a big part too.

I have really been digging in with the Anti-parasite stuff over the last three days. I certainly have slept much better the last 2 nights, the throbbing/pounding thing has been much better and tonight I can 'feel' things 'moving' which is disconcerting to say the least.

It is interesting that our ancestors would do regular parasite and de-worming procedures, but we have completely left that behind, and maybe we are suffering much as a result of that. Ironically, we all accept that animals have parasites, yet never consider that we have them ourselves.

My Mum was type 1 diabetic from the age of 16. She was also anemic all her life, yet no one ever investigated why.

From reading the book it seems quite possible that she may have been infected by a fluke or parasite (or several different types) that targeted her pancreas. Many of them are also avid consumers of our nutrients - they get the rich pickings and we get the dross! It is quite possible that a parasite may well have been gobbling up all her iron.

Whilst she was type 1, I am type 2 (or even type 1.5), my Dad was type 2, as was his Mother, and as is his older sister and younger brother. Perhaps it is not genes that link us all in our disease but the same damn parasites!

There has to be a reason for all these diseases and illnesses. Another thing Hulda wondered about is why she found animal flukes in humans. She suspects that the many solvents that are present in so much of our foods and cosmetics, etc., may well attract them. I also think that our sweet diet may also be an attraction.

We don't eat the bitter herbs and vegetables that were commonly consumed years ago and have replaced them with a diet that is very sugar and carb-laden. She also found parasitical links to things like Cancer and Aids.

It is no surprise that we are being invaded so easily. We are 'generous hosts'!

Interesting little page - Open Original Shared Link

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AliB Enthusiast

Whitney - you might want to consider doing an herbal parasite cleanse - I was reading that certain parasites can cause constipation!

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    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
    • trents
      As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.
    • trents
      10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.
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