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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?

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!

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!

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! :)

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

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.

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!

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. :(

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

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

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?

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!

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

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.

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!

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?

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. :)

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

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!

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.

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!

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

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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      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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