Autoimmune Disorder Thread

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ndvoice
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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  • Jjsanchez1123
    Jjsanchez1123 Posts: 4 Member
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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 try
  • ndvoice
    ndvoice Posts: 161 Member
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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!
  • anglyn1
    anglyn1 Posts: 1,803 Member
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    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.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
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    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.
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    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.
  • ndvoice
    ndvoice Posts: 161 Member
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    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.
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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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.
  • macchiatto
    macchiatto Posts: 2,890 Member
    edited November 2015
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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.
  • auntstephie321
    auntstephie321 Posts: 3,586 Member
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    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.
  • Cheesy567
    Cheesy567 Posts: 1,186 Member
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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.
  • neohdiver
    neohdiver Posts: 738 Member
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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.
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    @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
  • neohdiver
    neohdiver Posts: 738 Member
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    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!
  • nvmomketo
    nvmomketo Posts: 12,019 Member
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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!
  • SamandaIndia
    SamandaIndia Posts: 1,577 Member
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    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.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
    edited November 2015
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    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. :)
  • SamandaIndia
    SamandaIndia Posts: 1,577 Member
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    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.
  • Lillith32
    Lillith32 Posts: 483 Member
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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.
  • DebraWilliams1
    DebraWilliams1 Posts: 61 Member
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    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.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
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    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.