Autoimmune Disorder Thread
ndvoice
Posts: 161 Member
I believe there's a few of us here using LCHF to treat autoimmune disease? Figured I'd create a thread so we can meet & support each other through our unique challenges, or share tips. Please chime in and introduce yourself!
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Hello !...I'm Julia from Texas and I have been battling MCTD (mixed connective tissue disease) and major lupus symptoms for 3 years now.. It's been really hard but after reading about Keto I thought wth I'll give it a try0
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Hi Julia!
I forgot to introduce myself lol. I'm Neysa, from NH. I have an unknown autoimmune disorder that attacks my nervous system & autonomic nervous system, as well as muscles. (Docs can only tell me that it's autoimmune & it falls into the bucket of about 100 diseases that do not yet have names.) Been an issue for about 5 years now. Keto has kept things calmer for the past few weeks. I'm newer to Keto. Flaring now, but hoping it's short lived!0 -
I'm Angela. I have celiac disease and have recently been tentatively diagnosed with rheumatoid arthritis. So far keto has seemed to lessen my joint pain.
Not autoimmune but I also have a Chiari malformation and had brain surgery three years ago.0 -
I have celiac, hashimoto's and ITP. I also have autoimmune arthritis, but it seems to mostly be related to cd and tends not to occur often anymore (after 3+ years gf). It DID flare-up mildly (flu-like, mouth sores, fatgued, pain) when I started keto too, but it tends to do that when I change something in my health or go through a tough time. It was very mild and only lasted a little over a week.
I'm also eat for ketosis to help manage my OA in my hips and knees. I had bone spurs and pain in my 30's so I need to slow this down so I can still walk by time I'm 50. LOL I also have prediabetes so I need to stay on that too.
Huh, I really have no reason to ever eat high carb again.0 -
Autoimmune diseases have really impacted our home. I did not know what LCHF when I started it. I was just try to escape starting Enbrel for pain management due to it increase risk of cancer and other bad things. In my simple mind I thought perhaps cutting out grains and sugars would work and it did within the first 30 days.
While my pain dropped from around 7-8 to 2-3 in the first 30 days a year ago I have just started to work on the last 2-3 level. A week ago I started on Wobenzym N systemic immune enzymes and so far no side effects even taking 40 a day vs 6. From what I can read one needs to give them a month to see if the Wobenzym N will be helpful. Here are a few links that I read before in invested in a stock pile.
livestrong.com/article/161756-benefits-of-wobenzym/
https://mskcc.org/cancer-care/integrative-medicine/herbs/proteolytic-enzymes
advancedalternativescenter.com/Wobenzym_Systemic_Enzyme_Therapy_s/171.htm
This next one was very helpful with some of the science. It is a limited version of the book he sales $10. yourhormones.com/documents/Systemic_Enzyme_Therapy_Hormone_Health_Edition.pdf
While Wobenzym N is not a medicine the next like is similar to a drug insert with half-life, etc info. zdroj.mysteria.cz/files/WOBE.pdf
I have never be into enzymes before so I am clueless of the outcome of this trial of Wobenzym. It was developed about 50 years ago at a college in NY then Dr. Wolfe total it to Germany to produce and test it. 40 years later it is used worldwide by healthcare providers but not so much my MD's in the USA. I think they have like 100 million users worldwide. One thing that impressed me was there has been many clinical trials in the literature with no death related to Wobenzym N that has been reported.
Where it works or does not work for me I will report by the end of the year. Has another others had any experience with Wobenzym N. The price on eBay/Amazon runs $0.10 - $0.15 per tablet depending on the size bottle that can range from 100 to 800 tablets. The 200 count runs about $30.
I think there is a lot of rip off products aimed at those of us with autoimmune diseases. I am hoping with Wobenzym having been on the market in a major way for 40 years means it must work for more than not. Hopefully I will find the side effect of weight loss that some report with Wobenzym.
I do know LCHF works well to cut my arthritis pain down to where I can function OK.0 -
I have not played with enzymes yet. I do take herbal anti-inflammatories, oils with DHA, a green formula, & probiotics. I am carb free with the exception of fruits and veggies. Also dairy free. By removing the foods that cause an inflammatory response, I've found much relief.0
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@ndvoice there just are too many things on the market to try them all very well it seems. Cutting out the grains and sugars let long term health issues get better or healed. Where a leaky gut may be at issue I think it is a must to get fixed to see the root causes to stop occurring. I have been on fish oil for 20 years that I think helped reduce my damage.0
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I have MS along with PCOS. I've read such mixed advice on diet for MS but a paleo-type diet is one I've read the most about. LCHF wins for PCOS.
I've done other moderately low-carb diets in the past but started keto on Monday.0 -
My SO has crohns and ibs. I can't convince him to go low carb consistently, so I do my best to lead by example.0
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I have Myasthenia Gravis and Neuromyotonia. I found the Paleo Autoimmune Protocol to be very eye-opening in helping me figure out some of my triggers. I transitioned to low-carb to lose weight and control steroid cravings.0
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Hashimoto's - I got a triple whammy diagnosis for my 59th birthday: diabetes, hashimoto's and vitamin D deficiency.
I am curious to see how this works out. My doctor seems more worried about the Hashimoto's. I'm focusing on the diabetes - but some of the research I've come across suggests a low carb/ketogenic diet may make Hashimoto's worse. (Other says better, and I tend to think the former is part confirmation bias by people who are unwilling to take an objective look at carbs. But once I get past my next visit, I will do more research.0 -
@neohdiver I hate to hear that. After being stuck in the 20's for years finally over the last year I finally got my Vit D level into the 90's. It seems from some articles that I have read with Vit D levels in the 70-90 range most diseases do not show up and if we can get our levels up into that range after the fact that it may even help reverse things like cancer, etc. Keep in mind taking Vit D3 without taking enough Vit K2 (not talking about Vit K/K1) can lead to heart disease I read. Vit D3 will move calcium very well but K2 tells calcium where to go. Without enough K2 the calcium can wind up in the arteries and heart valves. Thankfully there seems to be no way to over dose on Vit K2.
Below are a few random Vit D articles.
hypothyroidmom.com/92-of-hashimotos-patients-with-vitamin-d-deficiency/
About impact of Vit D killing cancer cells abcnews.go.com/GMA/OnCall/study-vitamin-d-kills-cancer-cells/story?id=9904415
Japan is one country that is leading in new low cost ways for better health.worldhealth.net/forum/thread/99358/vitamin-d-proven-more-effective-than-bo/?page=10 -
Thanks @GaleHawkins. I'll look into Vit K2. I had vitamin D deficiency a few years ago (and got lazy about taking vitamin D), and it popped back up right away with supplementation. But I hadn't heard about the need for Vit K2 - and as someone with a history of DVT, I'll have to carefully sort out its role in coagulation. So much to balance!0
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In Calgary (Alberta, Canada), the labs refuse to test for vitamin D deficiency anymore because a slightly low D is considered to be normal around here. Even if a doctor orders it, they won't do it (had it happen).
I learned much from Stop the Thyroid Madness. I don't agree with everything there but most of their approach was true for me. Thyroid issues are a bear to get straightened out sometimes. It took me 10 months to finally get my meds to where they should be, but I was fighting my doctor and finally had to find another doctor who would not just look at the TSH. I hope it goes better for you!0 -
I am at the exploring phase. Doctor has me on a no sugar diet to treat the most likely suspect, over population of candida gut bacteria. I feel so much healthier, 3 weeks into that lifestyle, I can't believe it. Now we need a way to get my system to be regular. That will be his success criteria for further diet modifications. I'm so happy to be more immune to viral infections and less fatigued that I I can live with the constipaton. Maybe there is an even better kind of normal to be found once we make more changes.0
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SamandaIndia wrote: »I am at the exploring phase. Doctor has me on a no sugar diet to treat the most likely suspect, over population of candida gut bacteria. I feel so much healthier, 3 weeks into that lifestyle, I can't believe it. Now we need a way to get my system to be regular. That will be his success criteria for further diet modifications. I'm so happy to be more immune to viral infections and less fatigued that I can live with the constipaton. Maybe there is an even better kind of normal to be found once we make more changes.
Constipation is not the norm on this diet. Try adding coconut oil or nuts to your diet. Drink pleanty. Low magnesium (from low sodium) can slow you down too.
Glad it is working for you. 0 -
Hi there, forgot to introduce myself. Samanda here, now living in the Netherlands where the gorgeous autumn leaves are falling. I was in India for 4.5 years before this for work. An Aussie and a scientist that now manages IT projects. If that helps you pigeon hole me? Love helping people and making folk laugh.0
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Hello, My name is Julia (from Florida) and I don't have any autoimmune diseases... on paper. When I was about 2 years old, I received a fairly large dose of radiation. I had very mild symptoms of radiation poisoning, mainly peeling skin and lower immunity (at least that I remember). A few years later, I got really sick from a trip to the ocean after playing with seaweed, and the doctors blamed that on improper thyroid function. I never really connected the two until I read that radioactive iodine isotopes can replace normal iodine in the thyroid and screw thyroid function. Fast forward a few years, I had fairly classic symptoms of thyroid deficiency, such as hair loss, weight gain, freezing extremities, chronic fatigue, migraines and depression. Battle of the bulge was a constant in my life, but I had a really tough time with it. At some point, I asked my family doctor to check my thyroid function, and was told that I don't need it, I just need to eat less and exercise more. So I did, and thanks to some gnarly diet drugs and a crazy three-times-a-day workout routine I managed to lose weight, however... at this point, my joints, never well-functioning to begin with (I used to twist/turn/sprain wrists and ankles on regular bases) pretty much decided they've had enough, and I ended up in the doctor's office, with bursitis in both hips. The doctor told me I shouldn't run ever again. This was a few years after I joined the military, so the whole 'non-running' advice didn't happen. My joint problems started getting more extreme -bursitis, tennis elbow, back problems, constant ankle sprains were my companions. As per my military training, I took insane amounts of motrin, drank water, rubbed dirt on it and drove on. My hair was still falling out. I was almost constantly freezing cold. My fatigue and depression was getting to the point of me needing anti-depressants, and my migraines were increasing from a once monthly thing to debilitating hell at least once a week. The straw that broke the camel's back was severe stomach pains I got one nice sunny week in October 2011. I couldn't eat solid food without throwing up, and the pain was intense. I went to the doctor, who promptly told me I had nothing wrong with me, and take a few anti-acids. I asked if I could get food allergy testing, and got told that I don't need it, and I was imagining things. By that point in time, I was aware of the paleo diet, so I decided to do an elimination diet for a few months and see if that helped. In three months, I walked back into my doctor's office clutching a fat notebook detailing my daily menu and how I felt afterwards, and asked the doctor again to run some tests. This time he complied. Basically, I've been avoiding gluten, soy, legumes and dairy ever since (recently I added the dairy back in). Magically, most of my other weird symptoms resolved themselves once I quit gluten. My depression and fatigue disappeared. My hair quit falling out in clumps. My hands and feet don't get as cold as they used to, and all the -itises that I had are not here anymore (unless I inadvertently eat some gluten, then it's on again). I lost a bit of weight and resolved my stomach issues. Life got much better.
In a few years, my weight loss stalled, I found keto, and made the jump. I am still soy and gluten free, but dairy doesn't bother me as much, so I started including a bit of it in my diet.
Recently I was reading online the symptoms for Celiac, and it sounded like I had quite a few of those. Since I don't trust doctors and would rather not have to start eating gluten again just to do the test, I decided to continue on my current course of a gluten-free and soy-free diet, and ignore haters who tell me that going gluten free unless you're diagnosed is stupid. You try having every joint in your hate your existence, and then we'll talk about what you would or would not eat.
So, do I have an autoimmune disorder? Possibly. I may never find out. I will always try to treat myself like as if I do though. It's just healthier that way.0 -
Hashimotos and DH (dermatitis herpetiformis), Never bothered getting tested for celiac, although I think I have it, since DH is also caused by gluten and requires a GF diet.0
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SamandaIndia wrote: »Hi there, forgot to introduce myself. Samanda here, now living in the Netherlands where the gorgeous autumn leaves are falling. I was in India for 4.5 years before this for work. An Aussie and a scientist that now manages IT projects. If that helps you pigeon hole me? Love helping people and making folk laugh.
Huh. I didn't either.
I'm Nicole. I live in Alberta, Canada near the Rocky Mountains where it is... winter. Autumn is definitely over.
I'm a SAHM who homeschools my boys. I used to teach highschool science and some math.
@Lillith32 That does sound like celiac. I don'it blame you for not doing more tests. An extra 3 months of gluten is no fun.
@DebraWilliams1 DH is celiac disease, just a skin manifestation. It's a lot harder to get a positive blood test or endoscopic biopsy for someone with DH. I would just go with the skin biopsy or whoever diagnosed the rash.... I'm very lucky I never developed DH. It sounds horrible.0 -
GaleHawkins wrote: »@neohdiver I hate to hear that. After being stuck in the 20's for years finally over the last year I finally got my Vit D level into the 90's. It seems from some articles that I have read with Vit D levels in the 70-90 range most diseases do not show up and if we can get our levels up into that range after the fact that it may even help reverse things like cancer, etc. Keep in mind taking Vit D3 without taking enough Vit K2 (not talking about Vit K/K1) can lead to heart disease I read. Vit D3 will move calcium very well but K2 tells calcium where to go. Without enough K2 the calcium can wind up in the arteries and heart valves. Thankfully there seems to be no way to over dose on Vit K2.
Below are a few random Vit D articles.
hypothyroidmom.com/92-of-hashimotos-patients-with-vitamin-d-deficiency/
About impact of Vit D killing cancer cells abcnews.go.com/GMA/OnCall/study-vitamin-d-kills-cancer-cells/story?id=9904415
Japan is one country that is leading in new low cost ways for better health.worldhealth.net/forum/thread/99358/vitamin-d-proven-more-effective-than-bo/?page=1
Wow, good to know! My MS specialist has had me taking megadoses of Vitamin D for a good 6 or 7 years and I'd never heard that about Vitamin K2.0 -
Not sure if the link will work, but today's email had this from Dr. Isabella Wentz, who researches thyroid and AIP -- Website: www.thyroidpharmacist.com.
Many of you were able to download the free thyroid cookbook! We've since made some improvements to the Thyroid Bundle Cookbook. Make sure to download the updated copy below.
Click this link to download the Updated Cookbook
https://s3-us-west-2.amazonaws.com/thyroidbundle/Thyroid_Bundle_CookBook.pdf?inf_contact_key=731ce44371f5925c9150433a09bc9bfa62a18b2fbc9b681a923ae7ef2eb06f61
I haven't used the cookbook, but collect the links just in case!3 -
Hi Everyone!
My name is Bonnie in Canada. I don't have an any autoimmune problems but I wanted to pass on some info that I recently learned that I know is not really mainstream. Take what you will, leave the rest.
My partner and I have started following the endeavors of a man named Wim Hof from the Netherlands.
He is better known as the Ice Man. A guy who can control his core temperature to withstand hours in freezing temperatures. What does that have to do with you? Well, he is no longer just a stunt person. A few universities have started studying him to see what it's all about and in his last round of testing he not only showed that with his method he was able to control his temperature but also his immune system, inflammation response AND stop pain signals in his body!! Not only that but to prove it was his method and not that he's a freak of nature, he taught 12 other people to do it as well who were also tested!!! Even the universities are saying this could prove helpful for people with autoimmune disorders, depression, anxiety and a handful of other things.
The best part is, his method is relatively easy. It has 3 parts consisting of breathing, concentrating and exposure to cold (most people use cold showers). Don't worry you don't have to jump in all at once. He actually encourages you to take it really slow with the cold starting maybe only with your feet and not actually completely cold water. People have known for years that cold showers help to stimulate white blood cell production.
The breathing is simple and consists of 30 particular breaths, then holding the breath. This sequence repeated 4 times to complete a session. Easy and doesn't take too too long. Take it with a grain of salt but I figure it can't hurt. There is a section where he suggests doing push ups, but if you can't for various reasons, don't. It will still work.
So not only do they know that this method does work they also now know WHY it works. I can't remember all the brain chemicals and the why's and hows but I'm putting a link to a youtube interview he did with Dr. Rhonda Patrick that explains it. It is definitely a bit long and tedious in beginning. It's around the middle where the WHY starts to be explained. Definitely worth a listen.
https://www.youtube.com/watch?v=389c31dD9xg - Interview with Rhonda Patrick PH.D.
He has a website www.wimhofmethod.com that I found not really good but if you watch a few of his videos he is NOT in this for money. That's why it's a little hard to follow. He does have his full course available for $200 but he will send if you click the link there he'll send you the 3 free videos that get you started and really... I think that's all you need to get going and see if it's something you'll be able to follow/use. He's really just into what his does, not so much the marketing. And since his wife died of depression and mental illness, he's really into sharing this with people to help as many as he can. There is also a useful facebook group that is quite active, just google Wim Hof method.
Another really good interview with him is on the Joe Rogan Podcast, but be forwarned, Jor Rogan does swear a lot. So if that bothers you, you might want to skip it or just hold your judgement in favor of the valueable information that he shares.
https://www.youtube.com/watch?v=A9zS94x2nd8 - Joe Rogan Podcast #712
And finally here is a short video with Wim explaining the basis of his method.
https://www.youtube.com/watch?v=Y1ial3Rc7Xg
I hope it helps someone!
Be well,
Bonnie2 -
@macchiatto somehow I missed the need for K2 MK4 and MK7 for years then found info about it in a small book someone mentioned then Google lead to many articles that K2 needs to be taken if taking Vit D3 to prevent calcium build up in arteries and heart valves, teeth and joints because without K2 calcium does not know where to go like into bones and teeth.
I read about a doctor in Brazil using up to 115K units daily to "cure" MS. I did take 40K units for a short while then dropped back to 20K units of D3 to get my levels finally out of the 20's once I understood next to no one dies prematurely with Vit D levels in the 70-90 range. When I tested this year I finally was in the low 90's.
The best thought I read about the cause of MS is that the mother has low levels of Vit D when carrying the child. I knew one girl growing up who developed MS and had a son that developed MS so there may very well be a genetic/environment component as well.
To help prevent/control cancer with Vit D3 I see most often the levels mentioned are in the 70-90+ range. I plan to work to stay in the 70-100 range (USA).
Did high dose Vit D3 help with your MS symptoms?
The simple way I read to know if one is short on Vitamin D/K2 is by talking with your tech who cleans your teeth. If there is hard plaque that has to be scrapped off then one is low in Vitamin K2. The last I read there was not a good test for Vit K2. Coupled with the info that one can not overdose on K2 I now error on using more than 150 mcg daily of MK-7.
With my Vit D level in the 90's taking high levels of K2 the hard plaque build up one my teeth has gone away. I hope the same happened to any calcium build up I may have had in my arteries and heart valves. I just started Wobenzym systemic enzymes that is to clean out arteries, heart, etc too.1 -
GaleHawkins wrote: »@macchiatto somehow I missed the need for K2 MK4 and MK7 for years then found info about it in a small book someone mentioned then Google lead to many articles that K2 needs to be taken if taking Vit D3 to prevent calcium build up in arteries and heart valves, teeth and joints because without K2 calcium does not know where to go like into bones and teeth.
Thanks for the reminder -- I need to eat more natto! Apparently lots of MK7 in fermented soybeans (natto).
edit to add: Searched around and found the Natto association page in English. There is a comparison between amount spent on buying natto per person, and the amount of bone fractures ... In western Japan, people hate the stuff. In eastern Japan (Tokyo area and up to Hokkaido), they love it. So it seems to correlate, but hey, we all know that correlation is not causation...
http://j-nattokinase.org/en/jnka_nattou_03.html
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Interesting to hear so many with D deficiency. I also have D and B12 deficiency. Docs atrribute it to autoimmune effecting my stomach & causing malabsorption. Leaky gut syndrome? Despite supplementing both in megadoses, my levels stay low. (D increased from 11 to 20) I'm hoping that being on Keto & being grain free will lead to healing and improved absorption. Time will tell! I'm in NH, so similar weather to those in Canada. (I can cross the border in 2 hours) We do run low here, particularly in the winter.1
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Hashimoto's & vitamin D deficiency are linked, and thyroid disease is often linked with diabetes. So it makes sense to me - and those with vitamin D deficiency might want to consider getting a thyroid test, if they haven't already. One of the theories of Hashimoto's is that it is genetic with an environmental trigger (one of which is thought to be a vitamin D deficiency).0
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I've never been diagnosed with anything. But I'm convinced that I have had moderate Chronic Fatigue since I was 19 after a 1.5 month long battle with mono. I was never the same after. All the time exhausted no matter how much rest I got and rapidly gained 80lb. Occasionally there was a pain/ache component to it. Doctors here always just said "depression" and gave me antidepressants. All those things did was make me unstable mentally. Still tired. Which made me depressed for real. Then I dropped the antidepressants that didn't work and started keto. It helped some. What depression I legitimately had is long gone. But I sleep poorly, and even if I do sleep, I'm still tired when I wake up and have waves of chronic-fatigue-tired that smacks me throughout the day. And during a certain part of my cycle, it comes back pretty strongly and brings the aches with it. I've yet to find anyone who will actually investigate anything, even do D and B vite testing. My insurance is a joke and covers nothing until I pay out $7000, so there's no doing anything anyway. (Affordable health care...hahaha) I suck down 2 cups of coffee a day and drink a Mio-generic with b-vites and caffeine. I take probiotics and ACV. The only thing that perks me up temporarily is exercise. And I feel great for awhile after, but then I get tired again.
I AM NOT DEPRESSED. Good grief! I am happy, happy, happy. Just tired, tired, tired.
I have some B vit pills to take, but they give me a migraine. I don't know what they put in that brand, but there went $12. I take D3 but then DH fusses at me for taking it. He thinks I'm going to overdose. I read and hear all kinds of things. I take mag and melatonin before bed. I still wake a million times a night. My electrolytes are fine. It's not a deal breaker or anything, I mean I'm going to keep eating low-carb and exercising. I just get tired of feeling tired. Somebody says take Bs, some say take Ds, some say take d-ribose, some say take adrenal support. I'm tired of spending money on supplements. The B-Complex gives me headaches because of some additive, the adrenal support gave me acne and made me psychotic and messed up my cycle. I accidentally got the wrong kind of niacin so that's money in the trash. Money down the drain I don't have to waste.
I've just kind of given up on it and accepted it like I've accepted that I'm carb-sensitive and just live my life. The tiredness is still annoying though, but I push through.1 -
I was B12 deficient before my celiac diagnosis and needed shots. Now that I eat gluten free my levels are high with no supplementation. I am low on Vitamin D however. There is a correlation between RA and D deficiency.0
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I'm Cyndi from Arkansas. I have Fibromayalgia, Lupus, and RA. I have battled with the pain and inflammation for over a decade. I have tried almost every drug out there with little to no relief. 10 months into LCHF WOE my pain and inflammation have been cut by 90%. I do have a flare up if I indulge in sugar or go over about 50 net carbs per day. I'm guessing I'm just that carb intolerant...
However, I can tell you, a year ago I was barely functioning. Weekends and days off were spent in bed. I dragged myself to work each day and collapsed on the couch, with nothing left after work. I popped pain pills and anti-inflammatories all day, every day just to make it through the day.
Fast forward to now, I'm up and about early each day. I'm running at least 3 times a week, and I'm actually enjoying my weekends and days off with family and friends.
Yes, I have lost a lot of weight, but what I have gained means so much more!
BTW, thank you for the thread! I wondered how many others have seen improvement with auto-immune disorders and Keto.3
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