UPDATE: I recommend trying my free advice below but, my dr has an online course specifically for Sjogren's and has a >80% success rate. https://drhouston.podia.com/the-sjogren-s-solution/9pq33
I frequently get asked how I am doing with my four autoimmune diseases, including Sjogren's, that I got from being vegan. For anyone that doesn't know, veganism makes it IMPOSSIBLE to be healthy as you can NOT get the vitamins your body needs to function. Yes, I had other factors (stress, lack of sleep) but, if I hadn't been vegan, my body would not have been weak and crashed. Thank goodness I had a great doctor who told me "eat meat" and that started my road to recovery.
I am thrilled to say that I am healed and doing amazing. I get asked if I have been retested to see if I still test positive for Sjogren's and the other autoimmune diseases. No, I have not been retested for a couple of reasons. My dr said it may take several years for me to not test positive for the antibodies and I also don't need to take a test to know that I have zero symptoms and feel great!
In hindsight, I believe that being sick was ALL related to my gut. I threw off my gut by being vegan (lack of fats and protein) and eating a lot of bread and tortillas. Then I also had stress and lack of sleep which my body couldn't handle in it's weakened state. Think about what you may have done to throw off your gut and weaken your body as you need to fix that. If you weren't vegan and don't think it was your diet, have you been around paint, chemicals or mold? Did you get lyme disease?
For anyone who is looking to heal their body, here are the 3 things that I did that helped me to heal:
UPDATE: Two years since I was diagnosed and a year and a half since I started on meat and the supplements, I tested negative for the auto immunes. I was shocked all my markers came back normal. I didn't need a blood test to know I felt great but it was amazing to see my Dr's face - the same Dr who told me there was no cure, only drugs to help me cope with the symptoms - when I said I had healed my body naturally. You too can heal!
I am thrilled to say that I am healed and doing amazing. I get asked if I have been retested to see if I still test positive for Sjogren's and the other autoimmune diseases. No, I have not been retested for a couple of reasons. My dr said it may take several years for me to not test positive for the antibodies and I also don't need to take a test to know that I have zero symptoms and feel great!
In hindsight, I believe that being sick was ALL related to my gut. I threw off my gut by being vegan (lack of fats and protein) and eating a lot of bread and tortillas. Then I also had stress and lack of sleep which my body couldn't handle in it's weakened state. Think about what you may have done to throw off your gut and weaken your body as you need to fix that. If you weren't vegan and don't think it was your diet, have you been around paint, chemicals or mold? Did you get lyme disease?
For anyone who is looking to heal their body, here are the 3 things that I did that helped me to heal:
- Fix your stomach acid/alkaline balance I have benefited SO MUCH from fixing my stomach acid/alkaline balance. I did a whole blog post on how much this helped me including a simple test to see if your stomach acid is low. I would be willing to bet that you have low stomach acid. Your stomach acid is probably one of the most important fluids in your body. The impacts of your stomach acid being off is huge. You need a strong acid / low ph. Very few people have enough stomach acid as stress, age and other factors deplete your acids. I take Apple Cider Vinegar (which you can take in the pill form if you don't like ACV in your water) and Betaine.
Once you fix your stomach acid you will be AMAZED at how it will fix so many things in your body! Without the right acid balance, you can't absorb the minerals your body needs. Without the right stomach acid, you can't absorb calcium, zinc, B12 or Iron. Some of the side-effects from your stomach acids being off and the lack of these vitamins are:
Anxiety
OCD
Sleeping problems
Hair loss
ItchinessAllergies
Dry Eyes (Sjogren's!)
Dry Mouth (Sjogren's!)
Gait Problems
Burning MouthMemory Problems / Fog
Fatigue (A lot of auto immunes!)
Tingling
Numbness
IBS
SIBO - Fix your gut I had leaky gut. #1 above may address this for you but, if not, I did a video on how I fixed it. In the downbar of that video are links to all the supplements I took to heal. I would try the stomach acid above first (I didn't discover that till later) as having the right acids and having your food properly digest could fix the leaky gut without needing to do the supplements. Once your acidic gut is fixed with #1, then I would recommend avoiding all gluten (I had to do that for almost a year) and possibly taking L-Glutamine
- Finally, fix your diet & lifestyle. I would strongly recommend to cut out all flours/gluten and to eat good proteins and healthy fats. I ate a LOT of steak during my recovery! It could also help short-term to take good gut biomes/biotics as your gut bacteria is probably off from the h-pylori (see the first bullet) I would recommend avoiding all junk food, processed food, antacids, antibiotics (unless absolutely needed), sugar and flour. Try to avoid eating within 4 hours of going to bed. Limit your alcohol. Drink plenty of water. Minimize stress. Minimize toxins (botox, vaccines, etc). Get enough sleep. Eat slower. These things alone will not heal your body from the autoimmune but it will help it to be stronger. You have to fix the root cause of what caused your gut to be out of balance. All of these things will help to make it easier for your body to do it's job. Once your body is healed, you can decide if you can handle the occasional splurge or even reincorporate the items you have eliminated.
UPDATE: Two years since I was diagnosed and a year and a half since I started on meat and the supplements, I tested negative for the auto immunes. I was shocked all my markers came back normal. I didn't need a blood test to know I felt great but it was amazing to see my Dr's face - the same Dr who told me there was no cure, only drugs to help me cope with the symptoms - when I said I had healed my body naturally. You too can heal!
Such a huge amount of information! So grateful for all the research and time you've obviously invested in your own path to being healthy AND that you've shared it here for us to benefit. Got my husband on the Betaine HCI Pepsin and Gentian Bitters and organic apple cider vinegar. He's so reluctant to try anything new so I hope to incorporate more as he allows Ü
ReplyDeleteFunny, because when I give him something to take he knows it is either "Elle" or "Dr. Anderson". His phone consult with Dr. Anderson was very helpful and eye opening. Again, thank you so very much ♥
Mark is the same way with trying something new. I got him to take 1 Betaine last night (knew this wasn't the right dose). Will see if I can get him to increase the dosage! I truly hope that what your hubby is doing helps!
DeleteEllen, I think I have Sjournes... my story is a bit like yours. I tried the Betsine which caused more burning so I do indeed think my erosive ibs is causing too much acid? Doing digestive enzymes & standard process Gasrtex. Was just diagnosed w DDD/arthritis. Would love to actually speak to you if we can🙏 you truly make me want to put the gloves on💪 & deal w it. My dry eyes are out of control.. . Dry brittle hair falling out;) achy joints other than my back/spine.
ReplyDeleteI am so sorry you are going through this. Can I ask a couple of questions:
Delete1) were you vegan/vegetarian or around chemicals/mold/paint?
2) do you have qa Functional Dr anywhere near you? That is what helped put me on the path to healing. If you don't, my Dr does do phone consults and you can book an appointment on his website: https://drhoustonanderson.com/ I truly hope you find what works but KNOW that you can heal and get your health back! xoxo
Elle Do you have any on going neuropathy or breathing issues currently how are you sleeping at night and I heart palpitations at night currently
ReplyDeleteNot any longer. I am 100%. I truly hope that you don't give up and know that you can be 100% healthy. I didn't see your reply to my previous questions but hopefully they lead you on the path to healing. xoxo
DeleteThank you Elle. I PMd you and also booked a virtual appointment with your FM Dr. I’m very sick with primary Sjögrens and your story is inspirational.
ReplyDeleteHi Elle, thanks for your post! Did you really fixed the dry eyes and mouth? And how long did it take? Have you ever taken low dose naltrexone? I read good stories about it for Sjogrens, thanks!
ReplyDeleteNo I never took Naltrexone. I did fix the dry eyes and dry mouth and am 100% healthy and don't take anything. It only took a few days to start feeling better but, it took about 1 year of avoiding gluten and babying my body until I was 100% and able to eat anything I wanted.
DeleteGlad to know all your blood markers are now negative. I cannot recall if you mentioned your blood type in any of the youtube comments section.Learnt that blood type O thrive best on animal and fish products,not just vegetables. Is that your observations too?
ReplyDeleteI am on a Recovering Vegan FB page and this topic came up (wondering if blood type was why it took some vegans longer to crash than others). I don't know that there is a correlation as every blood type crashed at various times in the diet. I think other factors - like stress & lack of sleep - that your body could handle if it was healthy maybe accelerate the crash when your body is not healthy from the diet.
DeleteHi Elle,
ReplyDeleteHope you are well.How long did you use the Neem leaf three times a day?
With regards to the Takesumi carbinized bamboo,Did you combine it with activated charcoal too or one can just use either?Was the detox for three days or seven days flush in the detox phase ?Did you do 30 days flush with either items?
Since neem leaf can boost immune system,for how long were you taking the capsules thrice daily so you could avoid side effects ?
At what stage did you introduce the L-Glutamine to suppoet your musles etc and what dose ,frequency and duration?
I would like to know this as well. I don't have low acid in my gut so not sure if this plan would work for me.
DeleteHi Elle! I so appreciate your dedication and commitment into helping cure others with Sjogren's and other autoimmune diseases. You have listed so much information via your posts and youtube channel. Can you give me a detailed list in order of what I need to do? This post discusses fixing stomach acid and leaky gut, but what about vitamin supplements from other videos? When do I take what, at what stage and in what order? Is there any way to put it on one list? Thanks
ReplyDeleteHi Jeannine - first I am so sorry you are dealing with this. I don't know your situation - what caused it, what you are dealing with etc. My dr has written a 3 part fabulous article. He also does phone consults that you can schedule through his website:
Deletehttps://drhoustonanderson.com/natural-treatments-for-sjogrens-syndrome-part-1/
https://drhoustonanderson.com/natural-treatments-for-sjogrens-syndrome-part-2/
https://drhoustonanderson.com/natural-treatments-for-sjogrens-syndrome-part-3/
I truly hope that he helps you like he did me!
Hi Elle,
ReplyDeleteI have dry eyes, mouth, lips and skin, I'm a 36 year old male, I've had the dry eyes for years but they have got worse and so has my mouth with dryness.
I'm not vegan or vegetarian and wasn't near mould or paint.
I'm waiting for a blood test on Sjogrens inflammation markers but I'm pretty sure it's what I have. I have also been diagnosed with Coeliac disease so I've been off gluten for nearly 10 years since diagnosis, I also have vitiligo.
For the first suggestion, is it each alkaline foods in abundance? And with the Apple cider vinegar, how much in a glass and how often would I take this a day and for how long ? I used to use that before on my scalp, was the Bragg's the mother brand of ACV, I was having scabs and sores on my scalp.
What's the best meats to eat ? I have chicken and turkey,is it a good idea to get steak?
For the second part, supplements, what do you suggest? I'm in the UK. I'm currently taking vitamin B6, Vitamin D and Magnesium.
You also suggest L glutamine? Should I get the ACV first and then get this and other supplements after ?
I have been off dairy and a lot of processed foods for over a month now.
I've not noticed improvement in my eyes or mouth from doing this but it has helped a nerve entrapment on both elbows it's called Cubital tunnel syndrome.
And take more probiotics and get probiotic sachets ?
What else can I do?
What step were you at when you noticed your eyes and mouth were less dry?
I believe I can beat this, so please help with the information you have gained so you can help me and others.
I am so sorry Dean that you are dealing with this. I honestly wouldn't worry about a 'test' to label you - go by how you feel. Since you ruled out so many causes, it would be good to understand the root cause - if not exposure to anything what about a lot of stress? I wouldn't worry about Bragg's/the mother - just any ACV is fine. I can't handle much of it so I also take Betaine pills. As for how much, take it and increase it at each meal until you burp. Acid depletes as we age, with illness and with stress. Without acid, our systems don't run well and won't absorb the minerals/vitamins we need (google Dr Berg Betaine). For meat, I ate a lot of steak in the beginning but needed the acid to be able to digest it. B6 is good as it B12. Magnesium and Potassium are also good (if you are low in acid, your body hasn't been absorbing those no matter how much vegetables you ate) Vitamin D you need at least 10000 IU a day or at least 20 minutes of direct sunshine. I also recommend Zinc just for your overall health. Yes, do the ACV before the L glutamine...same with healing your gut before adding probiotics. I know I am hitting you with a lot so this next advice will seem weird but, you have to know what is/isn't working and that is hard to keep track of when you change a lot. For me, adding more fats (duck fat to fry my eggs in and on top of veggies) and red meat and then healing my gut with the chinese coptis and charcoal - I noticed a DRAMATIC improvement in a couple of days. Then it was a much slower improvement over time. I would also take a good quality cod liver oil (no sunflower oil) for the Vitamin A. YES, you CAN beat this! It is related to healing your gut and food/minerals/vitamins you aren't getting or need to avoid. You are on the right path and will fine tune it over time. Please keep me posted on your journey. Sending prayers across the pond to you! ♥
DeleteShould I do the acid test with baking soda first before having the ACV? Ive just got a bottle of it, but now I seen your other article on the tablet form Betaine. I'm thinking use the bottle and then move to Betaine?
DeleteSomeone said they have 1 table spoon of ACV with 3 ounces of water before bed...what you think ?
I always thought we had more acid than alkaline in our system. I read that we should be 60% alkaline and 40% acid.
I would be taking the ACV in water once a day. I don't know to do more, would have to see how I react. I'm hoping it as the same positive affect the tablet form of it had on your SS.
I do get stressed yes as I have ADHD but I understand that healing a leaky gut can help with that.
The other auto immune conditions I have are vitiligo and Coeliac disease, my first vitliogo patch was when I was 4 years old, so I don't know if I was born sensitive bodied or through vaccinations a child. The Coeliac is easy to manage by avoiding gluten and the vitiligo is stable but along with these I've suffered with dry eyes for 20 years and dry lips and skin, I couldn't understand why. My optician said it could be blepharitis but I now realise the cause is the SS.
It's got worse these last couple months in the eyes and mouth, and my cheeks and nose at times can become red and hot especially when I'm in a room with the fire or central heating on.
I eat gluten free and have cut out sugary foods and dairy and alcohol, I don't know if any food in particular is causing it as even when I stopped eating bread for weeks and all sugars for months or a year my eyes didnt get better. They are worse now though as mentioned. Did you eat organic or grass fed meat?
If you can handle ACV in the quantities you need, then you don't need Betaine. I find ACV way too bitter. By any chance, do you have thyroid issues? If you google whatever your ailment is + Dr Berg you will find his free YT videos and he is a wealth of information. This video of his on vitiligo may help you: https://www.youtube.com/watch?v=ZOEWWvwCj_s&ab_channel=Dr.EricBergDC
DeleteOkay, 1 table spoon with 3 ounces of water, I'll try it and see. No thyroid issues for me. Okay I'll have a look great. Yeah the vitiligo is stable and the Coeliac is manageable by just avoiding gluten but the Sjogrens isn't so easy to avoid with the dry eyes for 20 years and lips and skin and now my mouth has become more dry. I'll do the ACV once a day then and see how I feel, maybe do it first thing in the morning and then notice if I burp more ? Looking back I've found when I do burp it's not one where there's a noise, it's more just silent with the air sound of it being released and it's been that way for 5 years or more where before it used to be a burp with the usual belching sound. I don't know if means anything.
DeleteI've put my drops In just now and my eyes are dry again and the whites of the eye are always red. I don't know if it's just a flare up but they have got worse this past couple weeks along with my mouth.
I'll look for changes then on the AVC and then move to the L glutamine and probiotics and prebiotics.
Did you eat grass fed steak or organic chickens or was it processed meats? I'm just looking if going organic and grass fed is something i need to do that can help and removing bread and breakfast cereal from my diet.
I know where you are and remember the panic. I am so sorry you are going through this. In the beginning, I put castor oil drops in my eyes every 10 minutes they were so dry. I felt I went downhill fast at the end and while it is scary and miserable,you CAN figure this out. I don't know about your Celiac or Vitiligo or other health so hope you do your own research but, it sounds to me like you might have:
Delete- not enough acid for digestion (hence the AVC or Betaine) https://www.youtube.com/watch?v=OxZBvKr-3x8&list=PLVLP-bhbxACbPvefKC_RpGcVhPuoXyhe3&index=121&ab_channel=Dr.EricBergDC
- and possibly some type of bacterial or fungal infection (common when you don't have enough acid to digest things). Different things work for that but, for me, I take garlic pills or oregano pills or chinese coptis. Warning, if I am right about the infection, any of these pills may purge things and put you in the bathroom (so don't do when you are out somewhere lol!)
It is really hard to know what works/doesn't work as you have to listen to the subtle signs of your body (do you have more/less puffy inflammation in your face, how your mouth and eyes feel, how your joints feel etc.) If you can keep a journal, that might help you tie things together. With luck, you can start seeing great improvements and then it will be the final tuning that is tougher. Grassfed and organic are ideal but, not mandatory. I would also recommend intermittent fasting (trying to eat only in a 6 or 8 hour window - I don't do breakfast, have a later lunch and then dinner - this lets your gut heal and makes it get active for that shorter period). I will be looking forward to hearing from you....hopefully telling me you are seeing improvements.
Thanks Elle, I watched that video you linked on the gut and a couple of his other vids it. Goodstuff. I took a tablespoon of ACV in 8 ounces of water first thing this morning before my breakfast, I usually have cereal but today I had dairy free youghurt and fruit and for lunch I normally have bread sandwiches but i'm going to be eating fish and meal salads for lunch from now on and I always drink a lot of water.
DeleteMy symptoms aren't as bad as what you was going through, so i don't know if i'll see instant changes however I like to think positive like you and assume it's already in motion. When will I know when to get the glutamine and pro biotics and the other stuff you had to heal the gut? I'm guessing when I see improvement as the ACV may have then helped with my digestion. But if I don't see any changes after say 2 weeks or something, should i move onto working on healing the gut or not?
Yeah I do get stressed and go to bed late, so I'll work on that and the intermittent fasting.
With the ACV i've started it once a day to see how I go, does it make any difference if i have first thing in the morning before breakfast or 30 minutes before I go to bed ?
Two weeks is plenty of time. Do the ACV in the morning. My only concern is if the ACV isn't strong enough for you. For myself, I started taking 1 betaine with each meal and kept increasing it by 1 pill at each following meal till I felt warmth in my belly - that took 9 pills! I now have it down to 1 or 2 pills with each meal but, there is no way the ACV would have helped me. I could tell by how I felt and looked (my eyes weren't red, lost the puffiness in my face and just felt 'better'). Listen to your body. Sleep is crucial as that is when your body does healing. When I couldn't sleep, I resorted to drugs as I felt that drugged sleep was better than no sleep. I hope you continue to keep me updated as I will be thinking of you. Sending healing prayers your way. ♥
DeleteI'm on day 5, my eyes have eased a little but only to what they were before, eye drops do give more comfort than dry mouth spray which doesn't last very long before being dry again. I've been taking the ACV as 1 tablespoon a day before breakfast, i've been eating in a 10 hour window, i'll try and get it to 8. I'm going to do daily exercise including yoga sessions and get to sleep earlier. I do feel a warmth in my stomach for a short while following the ACV and it'll make me do 1 - 6 burps, it's not the belching sound, it's often just the sound of air release through the mouth. Did you follow the autoimmune protocol diet, which includes removing eggs, nuts and seeds and rice? From what you mentioned my eyes and mouth wasn't as bad as yours but there hasn't been the vast improvement like you mentioned.
DeleteHi Dean - it sounds like you may have a good acidic stomach if you get warming from just 1 TBSP acv so that may not be your problem. The only thing you have said you have had is 'stress'. That makes me wonder how your adrenals are doing. You need to tell me if this sounds right or not. If it is your adrenals, I would take nutritional yeast (preferably not fortified) for the b vitamins, potassium (lots of green vegetables - salad etc. or a ) and Try to get rid of your stress and get out and walk in the fresh air/sunshine. If you can do adrenal massage you may see improvement with that pretty quickly.
DeleteThis comment has been removed by the author.
ReplyDeleteYeah I may be pre disposed to these auto immune conditions as my first one discovered when I was aged 4, the vitiligo as previously mentioned an d the coeliac and Sjogrens could of arrived around the same time or later, i didn't even know I had dry eyes when the optician told me on my first eye test when I was 16, so who knows how long i've had them but it got worse and I rely on the drops now. Stress isn't good no, I wasn't stressed when I was 4 years old when I got my first auto immune condition, I know been talk of environmental toxins that are a potential cause of auto immune conditions, but I don't have any common symptoms of heavy metal levels, hidden infection? I don't know. so that's why I've recently thought it's probably due to a leaky gut. Yeah after the ACV, I feel a slight warm feeling in my stomach that leaves after a few minutes. Yeah i'll look into that on the adrenals and yes I like going out in the fresh air for a walk.
ReplyDeleteAlso, I watched your vid on helping with a dry mouth, the xylimelts sound really promising, i'll get those now.
And your video on supplements for auto immune.
I've heard a lot about oil of oregano so i'll get that, I saw a solaray brand of it in a shop by me that's 150mg, and the L glutamine you mention is known to heal the intestinal lining, i'm currently taking vit D, vit B6 and magnesium along with tumeric.
So I'll add the oil of oregano, L glutamine and I hear collagen can help heal the gut and dealing with dryness on the skin. So what do you think if I add those 3 to my daily supplmentation regime?
The Nem leaf, Takesumi and Monolaurin sound good but maybe i'll have those after I see how I do on the aforementioned supplements.
Your functional doctor mentioned he finds herbs respond quicker than probiotics, was that regarding the oregano? I'm thinking if I should get a probiotic supplement, such as a 7 day intensive probiotic or I continue with a daily yoghurt with live cultures in and a kombucha drink.
I think I was possibly "pre disposed' to auto immunes as I had hashimotos but, I also think we can all fix it and get healthy. Stress, sleep and food play a HUGE role in our health. You can fix the stress and sleep but fixing the imbalance inside from food will take a bit but you can do it. Oil of oregano pills worked within a day or two for me - super fast results. I would add 'zinc' to what you are taking just to boost your immune system. I like everything else you are doing and that you are listening to your body and willing to adjust course as needed. You are also smart to adjust just a couple things at a time and then wait and see (I am famous for shifting a dozen things and then saying Hmmmm, which one was it that helped lol!) I would also hold off on the probiotic drink till after you feel like you may have fixed any problems (ie, if you have leaky gut, probiotics would leak outside your gut and not do their intended job). I hope you continue to see improvements.
DeleteYeah I'll hold off on the probiotics then till the gut lining is healed. And what's best to do this, what did your doctor say is best ? I know L glutamine is said to be really good for this, can you recommend a good L glutamine powder as a lot of them are full of other aminos acids and extras, I'm after a pure one that's targeted towards healing the gut. And I hear collagen powder is also good, so I'm looking at starting with those two to heal the gut while I'm also continuing to take ACV, I'm on day 8 of ACV now, I sometimes feel the warmth in my stomach others times I don't, so I'm gonna try that test you mention above with the baking soda.
ReplyDeleteI love the brand "Ancestral Supplements" off of Amazon. Not sure if they carry L Glutamine or not but they have good quality products. I have used these products for healing my gut: https://amzn.to/3pCO7Ah and https://amzn.to/382cGkd
DeleteHi Elle,
ReplyDeleteI've found i've got candida on my tongue, this is most likely due to the dry mouth as a result of sjogrens. As I do my research I find out how important the gut is and it's true that all diseases stem from the gut. The autoimmune conditions are often as a result of pathogens getting into the system and damaging it along with our auto immune cells attacking them but causing damage to the tissues along the way.
I'm going to get the Betaine you had https://bigvits.co.uk/product/betaine-hcl-pepsin-gentian-bitters-120caps/
which it says may help stimulate the bodies production of natural enzymes.
So in that case should I get digestive enzymes like those in the link below or should I start with the Betaine first and see how I go? If I did do them both together, would I take the digestive enzymes pill right after the Betaine one washed down with water before a meal or is there another way?
https://bigvits.co.uk/product/enzymes-broad-spectrum-digestive-90vcaps/
Keep being amazing
I love your persistence in playing detective with your body. You WILL solve this! There are a few things - if you have a bacteria or other type of infection then the garlic or oil of oregano pills are like a natural antibiotic. For me, with not having enough stomach acid, I also can't get the nutrients out of my food so, I take the betaine until I get my stomach more acidic (you will know!) I would start with just the betaine and take 1 with protein (either a meal or even a piece of cheese). If you don't get a response, then up it to 2 at the next meal and so on until you feel the burning/burping/acidic reaction. Then go down 1 pill and keep it at that until you get a reaction and then reduce by 1 and so on. In time, you may be able to get it down to 1 or even zero a meal. Love your persistence and I do hope you are feeling better.
DeleteAh I got the tablets today and I have taken 7 with one meal, was I supposed to up the dose with each meal for through the days? I've just done my my dinner which was protein. But my breakfast and lunch wasn't so much protein based. Should I do it for each meal regardless or only high protein meals once a day?
ReplyDeleteSo to recap, I've just taken 7 on my first time of doing it 30 minute's before my meal to help them get in the bloodstream ready for my food.
I didn't feel nothing at all until my 7th one where after that I burped 3-4 times I didn't and haven't still felt any burning in my stomach.
I took the first one with a two small sips of water, after that it was mostly one sip and 30 seconds or so between each one. I stopped at 7 because of the burping but I was also unsure how many I'd need for the warmth and if I was meant to take them all in one sitting ? So I stopped.
Was that okay ? What's the right way to do it ? I'm surprised I felt nothing after 7. Do you usually feel the warmth within a minute of swallowing the one that does it ?
If you feel ok, then it is ok. I take on an empty stomach which most people can't do but I am so acidic. If you have gut irritation or burning, then only do with protein meals. Good that you stopped with the burping. I need a LOT to feel warmth so go by the burping as well (although occasionally get warmth). If you are alkaline like me, the pills seems really forgiving but, when you get the dose right, they really help! BTW, I am doing oil of oregano myself today and probably tomorrow :-)
DeleteHow many did betaine capsules did it take for you on the first day and that week?
ReplyDeleteYeah, i've heard some say have it with all three main meals but if my breakfast is only cereal then would it be useful ? Or can I just do lunch and dinner with the capsules ?
Another person said use it for all three meals as you're taking in bacteria and fungus with every bite and the biatine helps. But doesn't only help with digesting protein?
Summary so far... I took 7 yesterday with my dinner before burping, today for breakfast I had cereal and so didn't take any, for lunch I had some eggs included with my meal so I took them until I had a sign, after the forth one I burped a couple times and for dinner I didn't notice anything so followed on from last night where I had 7 so I dropped down to 6 and I haven't burped or felt any warmth on 6.
I would cut out the cereal and any gluten. Try to focus on whole foods (fish, chicken or beef and vegetables) as much as possible and avoid anything out of a box/package. It is fine to take as many betaine as you want at any time BUT only if it doesn't bother you. That is why some people HAVE to take it with food. I can take it on an empty stomach (I don't eat breakfast). It sounds like 6 may be the right number for you. The point of betaine is to make your stomach more acidic to stop gut problems (like SIBO) and with the proper amount of acid, absorb the minerals/vitamins from your food. I don't know if you also may have bacterial or any type of fungus/infection. I am prone to that and once a quarter or so, take chinese coptis or oil of oregano or garlic for a few days (I jokingly call it an 'exorcism of my creature'). I think as I have so much stress in my life that it is hard after I threw my body off for it to stay on balance. I also do things like get lots of sleep, drink water and go for a walk every day at lunch to get sunshine, do deep breathing and destress - don't underestimate the value of those things. I hope you are starting to feel somewhat better as you put the pieces of the puzzle together.
DeleteElle , can someone with IBS take betaine? I have Sjogrens but in my case was exposed to mold. I am vegan too
DeleteYes, Betaine helps IBS https://www.everybodybliss.com/blog/6-best-supplements-for-ibs/2019/3/7
DeleteI'm down to 5 at a time now on the Betaine capsules. How do you take them before a meal, as in how long between each one? I leave about 20 seconds and take each with a sip of water to save it not diluting the stomach acid and in that moment I feel fine. It's not until a 5 minutes later that I feel the warmth and i'll burp and have an acid taste to it.
ReplyDeleteSo to help make sure I'm doing it like you, I take it 30 mins before a meal, you? How long do you leave roughly between each capsule and how many sips of water? And at what point do you notice a burp/acid/stomach warmth? Thanks Elle.
To summarise on my first day I burped on 7 almost right after so the next day i dropped to 6, i felt nothing but 5 minutes later I felt a warmth and burps that were acid like, then the next day i dropped down to 5, again i felt nothing until 5 mins later and now i feel a warmth in my stomach and it's rised to my lower throat area.
So i'll drop to 4 now for tomorrow.
So what's happpening there, is the stomach acid building up over the seies of days? It's the warmest it's been now this is on 5, warmer than when previous days on 6 and 7. Thoughts?
Yes, your stomach acid is building as it is supposed to do. Depending on your stress and other factors that deplete acid, you should be able to continue decreasing the pills - sort of like adding chlorine to a pool. If there is sunshine and warm water, it will deplete the chlorine but, in the wintertime, you need less chlorine to achieve the same levels. I can take mine on an empty stomach. That bothers some folks so they take it in the middle of a meal. Listen to your body and continue decreasing the dosage as long as you continue to get a reaction. How are you feeling? Do you notice any improvements?
DeleteYeah, I'm on day 8 now on the Betaine HTL and I'm on 3 capsules a day, although I haven't been having them for breakfast, and i've only had them for lunch occassionly, i've had them daily for dinner though as I have more protein then. Two days back I felt a warmth on 3 capsules when I had them just before my lunch, being as i didn't have them much at lunch i continued with 3 capsules that day for dinner and I felt nothing. Funny how that was?
DeleteAnyway today (day 8) I didn't have the capsules at lunch but I did have them as usual with my dinner, i always have them 30 mins before the meal and I felt a warmth. So should I drop down to 2 now do you think? Or continue on 3 and have them with lunch and dinner?
My aim is to get to 1 when ready and then i'll introduce the digestive enzymes as I haven't used them yet and i'll have them with the Betaine before a meal. On one i'd have both capsules with each meal.
What do you think?
Hi Dean - I would try taking them in the middle of your meal. It sounds like you are getting more acidic (which is good) so hopefully will be getting more vitamins/minerals from your food. How are you feeling?
DeleteHi Elle,
ReplyDeleteI have Sjogrens possibly from mold exposure . Do you what can I take to help me heal? I am also eating a vegan diet gluten free dairy free 99% of the time.
Steak! I would eat a LOT of meat for at least 2 to 4 weeks. Continue avoiding gluten.
DeleteElle I was reading your doctor post about Sjogrens and he mentions. Botox. Could it be in your case that you got it from using Botox?
ReplyDeleteIf my system wasn't weak from being vegan, I easily could have handled botox, stress and other things. Being vegan it is IMPOSSIBLE to be healthy. You need animal fat to convert: https://empoweredsustenance.com/true-vitamin-a-foods/
Deletehttps://www.youtube.com/watch?v=Buh7Pog5w1c&ab_channel=ElleIsForLiving
Eat organic because all non-organic food is treated with pesticides and glyphosate which destroy gut health and immunity, as do vaccines and antibiotics. Drink raw whole milk and only drink water free of fluoride. Fluoride is toxic and damaging to gut flora and brain health.
ReplyDeleteI agree with everything you say but, eating organic isn't always possible and many people are ok with it. I think trying to eat as much whole foods and then doing organic where you can afford it but totally think the rest is mandatory! ♥
DeleteHey Elle, remember me, I still have the dry eyes and mouth, but my mouth is a lot better than it was. Overall i'm good but the autoimmune conditions haven't gone. My Rheumatologist sent me for an ultrasound where I was told I have some inflammation of the salivary glands but he said an ultrasound isn't a diagnosis of sjogrens syndrome, I think the only confirmed diagnosis is a lip biopsy, but then what can they really do? I have introduced some other foods back in as i have been losing weight on the strict wholefoods diet. It's a difficult balancing act, trying to fix one thing often can lead to an issue in another area of the body, which reminds me I need to get my PH urine and saliva levels tested again and get some more betaine and digestive enzymes. I'm still burping during meals usually two or three times but like before there is no sound just air release and i'm still waiting 30 minutes before drinking following a meal. I've been off the betaine for a week now and enzymes for a month but I will go back on them, i don't notice any difference from stopping them mind and nothing really either when I was on them. On the flouride I agree but then due to sjogrens i have had tooth decay and so my dentist prescribed an high strength flouride toothpaste which he said will help stop anymore tooth decay, other people with sjogrens agreed flouride isn't good but it does help with stopping further decay.
ReplyDeleteYes, I remember you! I have been wondering how you are doing. You are right that it is a difficult balancing act but trying to get your gut fixed and getting enough animal fats is key. I hope that you continue to heal and are doing better all the time.
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ReplyDeleteI'm glad you healed! Thank you for using your platform to help others navigate their health journey.
ReplyDeleteHey, Elle!
ReplyDeleteI'm Paola, and I just started the process of getting a diagnosis, but I think I have Sjogren's (dry mouth, skin, throat, and eyes, sudden dry cough, fatigue, shortness of breath, neuropathy, difficulty sleeping, and I believe it's also started affecting my heart)
Right now I feel like I'm at 20% and I would like to be at 70% or so, it doesn't even have to be a 100%. I'm 27, I want to go hiking, be able to exercise again, be able to sleep, and feel energized. I know I don't want to spend my life at hospitals or chasing a diagnosis just to be told that it's incurable, so I'm currently looking for a functional doctor and for non-pharmaceutical ways to help my body heal.
I decided to stop eating gluten and dairy and was wondering if I should also stop eating eggs. I would like to know how long I should take Betaine for and how many times a day I have heartburn and acid reflux
Thank you so much for providing all this information for free!!
Hi Elle! My name is Jen, and I've been dx with Sjogrens. I see you mentioned a Dr. Houston Anderson course - would you recommend that to someone who has a hard time taking supplements (seem to make tongue/mouth worse)? Thx!
ReplyDeleteHey Elle, I was wondering if the Dr you saw ever helped you uncover the root cause of your sjogrens? Was it a virus? I have read your blogs about your recovery journey and it seems promising.
ReplyDeleteThe root cause of my Sjogren's was being vegan. Once I fixed that and fixed my gut, I healed. Other common causes are exposure to mold, mildew, vaccines, pesticides and wearing down your body through things like lack of sleep and stress. I hope that helps.
DeleteThank you for replying. I wanted to tell you that though I did not have the ANAs or a positive lip biopsy result and therefore was not diagnosed with Sjogren's, I had extreme dryness of mouth, eyes, nose, ears, etc, plus digestive dysfunction and painful ovaries. I happened to ask for an Epstein Barr virus test, which was positive. And I can tell you that it was for sure EBV causing my symptoms, as once I treated it with functional treatments they improved. The tingling you speak of in some of your videos - I experienced too - but it was as if I was being attacked since it spread to my nose and down my throat as well.
ReplyDeleteMy situation came on fast and furious following some hormonal shifts and a covid booster (which really kicked it into gear). I was pretty much vegetarian at the time too, and certainly not getting enough fat and protein. I've done a lot of testing and my only food sensitivity was dairy, but I do have low IgA in my gut which I don't know if it's a function of not getting enough protein or because the EBV was attacking various glands and mucosal cells throughout. I'm still recovering but hopeful that things will keep healing. It has been just miserable. Putting this out there for anybody who comes across this blog searching for answers.
I don't yet know if I will have long-term complications from this but I can tell you that it has affected my cycle and that it seems to have caused low pancreatic enzymes leading to malabsorption - in the acutely ill phase I lost 18 lbs in 6 weeks (I'm already a small person so that was extreme). I was eating a lot and healthily! I've started gaining it again. Fingers crossed I'll keep improving.
To anyone looking for answers - don't stop searching for someone who can help you and find the root cause. Functional doctors are absolutely amazing. I had so many conventional drs tell me they couldn't do anything for me and to just treat the symptoms and live with it. Literally one said "there is nothing I can offer you" and "you will never find the root cause." BUT I DID.