Still Looking For My “Missing Link”

September 29, 2012 in Categories: , by

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This post is about frustration.  My frustration.  With my [expletive deleted] autoimmune disease that seemed to be improving dramatically in the late spring, then flared after eating tomatoes in July.  And three months later, it’s still not getting any better (although thankfully, I seem to have stabilized and am not getting any worse).  I get that nightshades are a problem for me, but what happened?  Not what happened to cause the flare (clearly tomatoes and stress), but why is it taking so long to heal?  What am I doing wrong?  Or maybe more importantly, what was I doing right before?!

The reason why my blog has so much autoimmune disease content on it is because I personally suffer from an autoimmune disease called lichen planus, a skin condition similar to psoriasis where itchy, painful, scaly purple lesions cover my ankles and shins (I have had lesions on my wrists and forearms in the past, but these have fortunately not reappeared with the current flare except for a couple very small spots).  Understanding which diet and lifestyle changes can mitigate autoimmune disease is something I am personally vested in and care deeply about.  I am constantly trying to understand the various facets of the paleo diet autoimmune protocol, research nutritional and herbal supplements that may help, and tweak as many different aspects of my diet, lifestyle and environment as I can to get a grip on my disease.

So, what was I doing right in May and June that saw such dramatic improvement?  I was following the autoimmune protocol (with the notable exception of occasional bites of nut- or egg-containing foods).  This was before I gave up coffee (yes, for those of you keeping track, I am still too chicken to try reintroducing it).  I spent a good amount of time outside (but I was still outside a good amount after the flare too).  I went on an amazing weekend trip to the beach with my family (stress relief?) and got a sunburn (vitamin D?).  I got sick immediately upon returning home (did I take any immune support supplements like zinc, Vitamin C or Echinacea?  I can’t remember, but it’s likely.).  I didn’t wear any makeup for a few days between the vacation and being sick (I know my make-up is gluten free, but maybe there’s a chemical sensitivity piece to this puzzle?).  I was eating similarly to how I eat now (maybe more coconut oil because I was drinking it in my coffee?).  I was getting about the same amount of sleep as I am now (and I’m sleeping way more soundly these days which should help!).  My activity level was about the same.  Am I more stressed now?  Even though I am sleeping well, I do feel quite tired, but that may just be a symptom of the flare.  Do I need to go back to the strictest version of the Autoimmune Protocol for a while and the reintroduce the foods that I seem okay with?  There’s just nothing obvious and it’s so frustrating!

Being frustrated makes it harder to comply with a very restrictive diet.  For me, the hardest part is sticking with the low sugar aspect of the autoimmune protocol.  I’m hanging in there, but I find it’s more of a battle and much more willpower and discipline is needed these days than usual.  I have added some supplements in the last couple of months (notably Fermented Cod Liver Oil and L-Glutamine), and these do seem to be helping and I think are a large contributor to the fact that my lesions are no longer growing.  I am working to switch up any supplements I was on that had potentially irritating fillers (mostly trying to steer clear of magnesium stearate).  I am also in the process of going chemical-free in my house.  I gave up shampoo in late April.  I am in the process of giving up my skin care products (and this one is tough for me because I’ve always liked them!) and moving to just using Tropical Traditions Gold Label Coconut Oil on my skin (actually, my skin is looking pretty great so far!).  I am giving up makeup on a trial basis (this one is hard!).  I didn’t like the Tropical Traditions deodorant so I’m still trying to find a chemical free solution for that (next thing to try will be making my own).  I have switched to Tropical Traditions liquid hand soap (which I LOVE!  I’m even using it to shave my legs and it’s awesome).  I have stopped buying our old cleaners and we are switching to a combination of different chemical-free cleaners and using vinegar too.  I am giving our tap water a very critical eye and am making an effort to only drink filtered water (I already did this for straight water, but I’m also trying to use filtered water to make tea and steam veggies etc.).  I feel like I’m constantly tweaking, constantly trying to find my missing link.  And the more I research and learn, the more possible culprits there seems to be.

When we recorded this week’s episode of The Paleo View, we had Diane Sanfilippo of Balanced Bites and author of my absolute favorite paleo resource book Practical Paleo (seriously, I cannot recommend this book highly enough.  You can read my review here).  Diane is one smart woman plus super nice (is there any better combination?!).  She was kind enough to chat with me a bit about my disease and what I’ve tried so far after we finished recording.  Very reassuringly, Diane confirmed that I’m on the right track.  She had some good supplement ideas, which I am going to try (changing up my vitamin D3 supplement, adding more fermented cod liver oil, trying a gamma linolenic acid supplement, using the Green Pasture Beauty Balm on my lesions, going to a tanning bed, and continuing with my efforts to reduce chemical exposure by changing beauty products and household cleaners).  I will be doing my best to change only one thing at a time, so this may take a while.  But, it helps me to have a plan.

Diane also had something really important to say that I needed to hear.  Sometimes these things just happen.  For people with autoimmune disease, there is no cure.  The disease can be in remission for years, maybe our entire lives, and it feels like it’s gone, but it isn’t really.  You can do everything right and still have a flare (the converse is true too; some lucky people can do everything wrong and still reduce symptoms).  Lichen planus is known for flaring up for 3-5 years and then mysteriously subsiding.  I hope I don’t have to wait years.  I hope I can figure out my missing link.  There is much more that is not understood about autoimmunity than understood.  And there is so much that is individual.  It’s about much more than just diet.  And time is such an important factor.  I might be doing everything right and all I need to do now is be more patient.  That’s not easy.

So, what do I do when I’m frustrated?  I take some deep breaths and try to focus on the positive.  I have a plan for the near future thanks to the brilliant mind of Diane Sanfilippo.  I have an amazing paleo support network developing around me because of my blog (that means you!).  My lesions are no longer getting worse (big sigh of relief) and I do not have to slather my skin with steroid creams to make it through the day.  Actually, that’s pretty positive, isn’t it?  Maybe all I really need to do is redefine success?

Comments

Keep your chin up and remember that you are doing the best you can, taking steps in the right direction and, as Diane rightly said, autoimmune disease is something you have to be patient with as there is no known cure.

As for the deodorant issue, I have been using a swipe of virgin coconut oil with a dusting of baking soda (using an old makeup brush) after I shower (as per Liz from Cave Girl Eats) and it works wonderfully :) I also never wear make-up because I feel that women are naturally beautiful and do not need it <3

I understand your frustration. I’ve been dealing with debilitating Acute Atopic Dermatitis for 15 years. Pregnancy and nursing helped keep it mostly down for 5 years but this last winter it was coming back full force a full year after stopping nursing. And I have a problem with my hands. Nothing like have your hands disabled for 1-2 weeks every month.
That’s what brought me to paleo, I was willing to try anything! After following you with the AIP, I did see improvement in other areas of my health but nothing worked for my hands.
Personally, the debilitating pain and depression that came with it got too much for me and I had to give in and go to a new dermatologist. Now I have to medically suppress my immune system to hopefully put it in remission. Needless to say, it was not an easy decision but I felt I needed to try for my family more than myself.
But it is still very important for me to follow a great health regime to STAY healthy with a suppressed immune system. So still on the paleo bandwagon!
Here’s hoping you find the key for yourself!

Have you thought about fermented food? yeast? We seem to have a lot of similar issues… I am not on any specific diet, as my needs are far to complicated to fall into any one category, why I am not 100% paleo, or 100% anything…anyway…fermented anything, throws me for a loop….also at certain times of the year when my seasonal allergies are high, I have to be extra careful about everything I eat, because my histamine levels are already so high, then I start to react to histamine or something…..during the spring and fall I tend to feel quite low about my situation because it is at its peek in difficulty…(though fall is my favourite time of year!!)..maybe you feel ups and downs due to seasonal allergies compiling in your system?! Hang in There!!!!!

I’m curious about your mentioning fermented foods…I seem to have had a questionable reaction after trying to add in some fermented foods (thought i was doing well by adding them in???). It was homemade sauerkraut…so very very little in the way of ingredients, but i’m quite certain it left me with a digestive reaction (bloating/constipation as i would have from gluten…but i’m certain there was no gluten…). Also have had some questionable feelings after kombucha….and that would maybe fall in the same category? Not as strong as a reaction as to the kraut though. Have you had reactions to fermented foods, Danielle?

No way! Are you serious? See…i saw you post on one of your updates that you’re so thankful for people commenting, etc as you thought you may have found your “palm to face” item that you may have been misusing…and…i too have been missing SOMETHING inspite of following the AIP for a couple weeks…i overall felt better, but then wanted to add in some of the extra helpful things i’d read about, etc so added kombucha (sp?) and our kraut was finally ready to try. I felt pretty different after the kombucha but continued thinking, well, it’s SUPPOSED TO BE HELPFUL…but then after the kraut (tried it 3 times) i had what would be equal to an all out gluten reaction for me (NOT FUN!). I was so going to post on your wall to ask you your thoughts on if it could possibly be the kraut…when instead of posting that question i decided to scroll through this post and see what feedback you got and if any of it happened to be on fermented foods, lol! Long and behold, there WAS! I am starting to have a love/hate relationship with your posts, lol…they are often RIGHT what i was needing/researching on my own…so that’s comforting to not be alone and to have your info from your research…but then…other times it’s bitter sweet b/c it’s confirming for me something else i didn’t want to be right, lol! What a journey this is! Yesterday and today i’ve just been plain out mad with it all and had coffee and tasted some homemade ice cream. Dairy i’m normally fully stringent on along with sugar…ugh…just was so frustrated. Now i’m frustrated and bloated, lol…it’s a marathon, not a race, right???

I’ve been experimenting with fermented foods and I have autoimmune disease. I was trying to locate the post you are referring to here but I can’t find it?

Hi Sabrina, my reaction to yeast is actually one of my worst, because it comes with crazy scary increased heart rate…I go red and blotchy all over, and itchy…also digestive upset(gassy bloatsing and other not so fun things…) and headache…it didn’t use to be this bad…but I guess with exposure or my age, or some other reason…I was always the girl who went all red cheeked * Asian glow* when I drank alcohol, also always really suffered from hangovers…especially from wine..to the point that I avoid all alcohol now. I can’t do yeast in breads, also no vinegar like apple,wine or balsamic… except the white distilled seems to be ok in small doses…in baking I use lemon or limes now instead….I have been afraid to try adding all the wonderful kraut and fermented veggies that all my paleo friends rave about…that kombucha seems to be loved by everyone…but I have been to afraid to try it…I just know it wont be pretty!….the only other thing that could relate all of these things is histamine level.

That’s so frustrating. I really appreciate your honesty about what you are going through. We need people in the paleo community to write blogs like yours so that we can help each other.

By the way, I switched to Purely Cosmetics which is a mineral style makeup a couple years ago, and I have really liked it. I don’t know what kind of makeup you use, but it is good on sensitive skin: http://www.purelycosmetics.com/

Finding a doctor-partner who practices functional or integrative medicine is so helpful for one’s journey towards health. Their access to advanced testing and knowing how to interpret the results can sometimes lead to finding the missing link more expeditiously. I feel blessed to be working with a doctor here in the SF Bay Area who is as dedicated to uncovering the reasons for my unresolving health issues as I am. I hope research and networking can lead you to one in your area. Thank you for your posts. You bring a special blend of scientific knowledge and honest yearning for healing which makes for powerful writing.

Consider adding Turmeric capsules (amazing for inflammation, as I know you must already know) and medicinal mushroom capsules. I have also had AMAZING results with a probiotic called VSL#3, I know you like to get probiotics from whole foods but this will just give you that extra push toward healing all the previous damage. My son has severe ADHD and mild autism and the results from this probiotic are incredible!

First time commenting… have you had your thyroid tested? You said you’re sleeping pretty well but still feeling tired. That sounds like thyroid to me. I have Hashimoto’s. You want your TSH low (closer to 1 is better, over 3 is definitely hypo), and your Free T4 and Free T3 high normal.

I don’t have any suggestions for you, as I’m pretty new to the Paleo world and don’t have the same issues you do. But I’d like to say thank you for documenting your down times as well as your successes. I know it’s hard to do that. It’s hard to stay positive and keep fighting the good fight when your reserves are down. Excellent idea to have a plan and just chip away at it. Keep up the great work! I’ve had succeess in my health journey so far, but if things take a downturn, you will inspire me to make a plan and keep working.

Not knowing anything abt your desease… but I would think the sugar aspect might be one of the keys? I get rashes from sugar alone.. But in any case – good luck! I hope you find the right answer in not too long!

Helen,
Norway (northern Europe)

A couple people have mentioned but have you considered flare-ups being linked with environmental or seasonal allergies where you live? They kick the immune system into gear. I know my eczema is linked with environmental allergies I have (esp. dust mites and ragweed). Histamines in berries make it worse as well. Best of luck.

I have felt this way too about my autoimmune disease and it can be so frustrating. Lately I have started to think the same thing about the supplements I’m taking and the fillers. Sometimes I seem to feel better when I take a break from everything, so it has got me thinking.

Also wanted to share this brand of natural and organic skin care: http://www.annmariegianni.com/

Do you have any recommendations around what to avoid for the AI Protocol regarding supplement/vitamin fillers and additives?

And thank you for all of the valuable and insightful info – and for sharing your personal experiences. Much appreciated!

I am still learning about which fillers are okay and which are potentially problematic (and trying to sift through the information to figure out what is confirmed and what is conspiracy theory!). I am trying to stick to powders if I can, and gelatin capsules if powder is not available.

Hi, I am not sure if I can be of any help, I’m quite new to the whole Paleo thing – I started with LCHF (low carb high fat http://www.dietdoctor.com/lchf) because of problems with dyshidrosis. It helped almost instantly and now it comes back only if I cheat. Could this be something for you, I mean less carbs and some more fat? (Not knowing how much carbs/fat you eat)

Eating more fat also helps keep the cravings away…

I don’t have AI issues but I appreciate all the investigation and work you are doing to help yourself and others. Don’t give up.

I don’t have an autoimmune condition but had a similar frustration after a year of paleo when I had pretty severe cystic acne. Not good when you are trying to convince other people its the way to go! I seem to have almost gotten rid of it now and it was because I started taking the fermented cod liver oil/butter oil blend! My theory is I stressed my body – there was a lot of change at the time and because of the new supplement – a lot of internal “fixing” was going on. So the acne was part of a detox reaction (clearing halogens like fluoride, bromine etc) from my system due to the extra iodine in the supplement. And, because I live in fluoridated area (which I had moved back to 6 months before) I would have a lot in my system.

I now try not to get stressed :-), get good sleep as you mentioned and I have bought a Berkey filter to ensure as much fluoride as possible is removed from my drinking water. (Its so annoying that they put it in there especially since I live in the UK and its one of the only regions where they add it.) In a few months I will try taking the supplement again and see if I can mitigate the reaction.

Also a food supplement I love is the brewer’s yeast that cavegirleats recommends. It gives you a whack of B vitamins and seems to support your body in times of stress – if you haven’t tried it I highly recommend it. You can just stir it into other foods, strews or gravies or drink like a cup of tea (although it takes some getting used to!)

I also still have 4 amalgam fillings which I haven’t yet found someone to remove them for me. On that note, do you have any fillings? There are stories on line about people with lichen planus who found their condition disappeared when they swapped out their fillings!

Sorry for the long reply! Keep up the good work!

This post and your post on recovering from gluten exposure were perfectly timed for me. I have been going through frustration with my [expletive] AI diseases as well. I too lament how the tiniest mistakes can mess up all the hard work you’ve done for weeks and months. My “mistake” was trying to work a job with crazy hours, which lead to a crazier sleep schedule back in July. I feel like I wiped out all the progress I’d made in the entire previous year. It is so very hard not to get frustrated and throw in the towel. Thank you for reminding me I am not alone; that others are struggling with the frustrating process of reading their body and tweaking their approach. Your blog brings me so much comfort.

I think sleep is a big factor for me too. I’m getting about 8 hours of good sleep each night, but I still feel like its not enough for me. But, it is just so hard to give up time for more sleep!

Hello, this is my first time sharing because I suffer from another type of Lichen condition, for a long time I was eliminating gluten, dairy, nightshades, egg whites and experienced no improvements, the cortisone cream only diminished the pain for a short time, but finally I am healing from the painful destruction in my skin produced by the Lichen Sclerosis by drinking a Red Clover Tea and applying a Red Clover Balm. This wonderful help is explained in detail at http://www.wholewoman.com At wholewoman.com there is help for women of all ages on many different and important health issues, a free video teach you how to prepare the balm etc..

I have a lot of similar issues….soooo frustrating. I have Celiac. Started seemingly out of nowhere 4 years ago. Ever since then I have been on the quest to figure out how to get my health back. I’m from a family with lots of allergy and autoimmune issues. My thyroid tests have always come in “normal” with TSH between 3 and 5. I know that ideally it would be between 1 and 2. I developed severe plantar fasciitis in my left foot in April and suffered all summer. Everything I tried came up short, that is until I started to regularly take Standard Process Thytrophin, two tablets in the am and two in the pm. My foot is now finally healing. The pain is still there, but at a whole different level. I also take Cod Liver Oil and mostly eat paleo autoimmune protocol with a fair amount of sweet potatoes. I can’t take vitamin supplements and probiotics or eat coconut or mushrooms as they will make me sick. If I go too low on the carbs I get more problems too. I wonder about liver health. My values are all ok, but with a leaky gut? it seems that the liver would have to work extra hard. The liver processes T4 into T3 and maybe if the liver is too busy, my body doesn’t get all the T3 it needs? I always refer to myself as a biological experiment. Right now the only foods I can eat without problems are meat and fish (except for chicken), veggies, including root veggies (except nightshades and mushrooms) and fruit (as long as I eat it 4 hours away from meat, otherwise I get thrush). I love green smoothies, they make me feel so good. Hope any of this helps. Thanks for your blog. :)

I know it’s been a while since you posted but TSH levels between 3 and 5 are not normal, especially if you are symptomatic. Ideally your TSH should be below 1 and your T3 close to 4. If you’re not seeing an endocrinologist I highly recommend you do. Also, get some more education on your Thyroid to see if you have the antibodies that would indicate Hashimotos Thyroiditis.

Just one note that might be helpful– I have a painful and less common type of eczema that is also triggered by an autoimmune condition, and switching from ALL conventional products has helped immensely (on the outside! My dietary changes have of course been helpful as well :))– but if you are looking for a great, cheap, super simple deodorant recipe, I finally nailed down a recipe that has worked so well for me (and even before I went natural with my products, I always struggled with finding a good deodorant.) I know it looks like a shameless plug, but here’s a link to the recipe on my blog if you’d like! http://www.babbleandbloom.com/2012/06/zero-to-crunchy-worlds-best-ahem.html
I’m also slowly but surely reporting on what has worked best for me in my natural product switchover, but I like to give it a few months of trial before I can endorse something new for sure. Please feel free to email me if you want to talk more about natural beauty/personal care product replacement! I feel like it’s all I’ve been researching the last few months :)

Sarah – have you tried no deodorant? I find that when I am eating foods my body tolerates, I don’t need it, but give me something that I don’t tolerate and whewww!! do I stink! It helps with the detective work. My husband comments when I’ve been eating things I shouldn’t be too.

Sarah, I REALLY sympathize with what you’re going through! I have an autoimmune disease, psoriatic spondylitis. There are so many factors in our lives that can affect our health. If more than one affects our condition (very likely), it can be extremely difficult to figure out what is working for us or not.

I started the AI protocol on July 1st. Within 3 weeks, my pain levels had dropped drastically, and my energy levels improved a lot. I was able to walk a full mile for the first time in 3 years. I was still nowhere near normal, but I was able to go off all pain medications – for the first time in 2 years! Then in early August, I ate a few items I shouldn’t (don’t we all?), and flared up again, but not as badly. I’ve been very strict again from late August through Sept, but haven’t yet reached the same improvement I had in July.

But I also have adrenal insufficiency caused by long-term steroid use, and we are again trying to have me taper very slowly off my steroids. Because my pituitary and adrenal glands are not kicking back in yet, I have to deal with symptoms of low cortisol (which includes severe fatigue) – and I’ll probably have to deal with that over the next year, which is how long my doctor thinks it will take to safely wean off. And I’ve also been experiencing severe insomnia for several weeks now. Instead of getting asleep by 11 pm, I’m often wide awake until 5-7 am! Yuck!

So how am I to figure out exactly what is best for my autoimmune condition when I’m dealing with other significant health issues at the same time? It’s so frustrating! But I’ll be seeing a Functional Medicine doctor for the first time this week. Hope he can figure out what might help. Good luck!

Thank you. I know how you feel. I’ve been at this for 5 years. In my case I haven’t mastered the art of perseverance, yet. Reading blogs like this help me.

Also, thank you for sharing the supplements and products that you are using. I’ve read that Echinacea could exacerbate auto-immune issues; but I’m not guaranteeing that I’m correct. I use Naturally Fresh Deoderant Crystal Spray Mist (potassium alum) and Griffin Remedy hair and skin products among others. I clean my place with vinegar and water and baking soda. I use a “sugar shaker” for the baking soda. Sometimes I add lemon peel, eucalyptus, or other essential oils to my solution.

I’m making your AIP Pumpkin Dehydrator cookies as we speak. Wish me luck. I’m considering reading your tips on sleeping. Considering I should be sleeping right now; I’ll wait until tomorrow. I’ll play a hypnosis or yoga nidra recording instead.

I’m with you in solidarity. Be well. :)

hang in there! I know it is frustrating when all we want to do is heal, but sometimes we just can’t control our body like we want to. I’ve found that meditation has been really helping me, as well as EFT for addressing emotional cravings, etc. Wishing you lots of health & happiness!

Hang in there…sounds like u have a good plan. I love your blog and new podcast with Stacey. I just wanted to say that I made the simple version of wellness mamas deodorant and I really like it! I was skeptical at first but it is working for me and I feel really good that it is #1: affordable and #2: natural and #3 it actually works and doesn’t stain my clothes. Good luck and I will keep reading for updates on how u r doing!

I totally understand your frustration. I have gutate psoriasis and a “touch” of psoriatic arthritis to go with it. Both are very difficult to treat without systemic drugs and so amazingly frustrating at times. There have been days where my wrists and fingers are wrapped up tight and my face has been what I lovingly (not really) refer to as “falling off” and all I’ve wanted to to was stay in bed and cry myself back to sleep. My disease is even part of why I had to give up being an esthetician (for now…I’ll be back! The economy wasn’t so helpful either, but that’s another story.)

Paleo has been a huge help for me. And that’s how I found you! I have to say your site (while new to me…going through your archives obsessively as I always do when I find a new and awesome blog) has been extremely helpful to me.

Today I officially started on the AIP after eating Paleo minus nightshades for about the last 6 months. I really didn’t have the courage to go head first into it until I found your site. So thank you. Thank you for being so honest and working so hard and sharing your journey with all of us. It’s helped more people than I think you can imagine.

I hear you Sarah and I so appreciate your struggle. I’m on gaps/paleo for months and ultra restrictive AI for several weeks and haven’t had success eating much beyond meat, fat and a few well cooked veggies. It’s so frustrating feeling so fragile, every little bit of success you work so long and hard for seems to disappear if you cross your eyes the wrong way. 2 steps forward and 1.75 steps back. It feels as though there is no margin of error and so much that you can’t know (for instance I also have a lot of serious dental issues combined with all this including cavitations possible sources of mercury under 5 crowns, trying to figure out how and to what extent that is affecting my recovery seems impossible and very $$$).

I wish I could offer some inspirational thoughts or even just a funny picture of a cat hanging off of a tree branch (which your site does for me literally on a daily basis!). The best I can do is say I know how you feel, it’s happening to me too. And at the end of a really tough week, you can’t even have a stiff cocktail to fall back on! I’m sending out a potent spiritual AI friendly cocktail to you and a huge thank you, again, for all that you do on your site to keep people like me from giving up!

Thank you for sharing your “downs” as well as your successes because sometimes it’s easy to feel that I am the only one fighting this battle. I’ve been dealing with celiac for almost two years now and giving up the gluten was the easy part. It’s the forever mystery of the next food I’m reacting to that drives me crazy. I’m so envious of the success stories when someone discovers something like nightshades and has an “aha” moment and feels amazingly better. I’m waiting for my moment. Right now I live free of gluten, eggs, yeast, dairy, soy, nightshades, corn, all grains, coconut (this kills me since the majority of great paleo recipes has coconut or coconut oil) and when I’m good coffee/tea (this is where I do cheat, I miss my coffee). I take all kinds of vitamins and supplements to “heal” leaking gut and rid of inflammation and I exercise almost daily. YET, I still feel like crap. I’m just at the beginning stages of learning how to make my own cleaners and laundry soap. I’m really praying you find your missing link and I pray I find mine also. Thanks to everyone else for sharing your great ideas also. I love this site!

I have heard of people who have healed Lichen Sclerosus by using a low-oxalate diet. Oxalates can be a problem for those with digestive issues because they don’t have o. formigens, which is the gut bacterium that degrades oxalates. You can find out more here: http://www.thevpfoundation.org/.

I hope you can figure out how to solve this problem. You deserve to be pain/itch free!

I have a similar, annoying problem (oral herpes), which I kept trying to cure through elimination, but couldn’t. I kept getting painful sores with even the tiniest bit of stress. I know I can’t entirely eliminate stress from my life. So now what?

The past 2 years, I’ve been trying to take off the “last 20 lbs.” This isn’t really for my health (I’m 5’8″ and a healthy 155-160lbs.), just for aesthetics. So, I’ve been in some sort of ‘paleo’ calorie deficit the majority of the last 2 years. On good weeks, I would fluctuate between 150 – 155. I would get an oral herpes sore almost like clockwork, one week before my period. Sometimes I would get a surprise sore on random occasions.

Anyway, during a vacation in July 2012, I experienced a major sore on my mouth. It was painful and felt like an accumulation of just everything. It really killed my vacation – and made me think twice about all of my “eliminations” to prevent future sores (which can also lead to extra calorie restriction). I decided simply to “nourish” my body and to not be in a calorie restriction. Now, I eat more fat and high fat yoghurt – but otherwise normal paleo food. I’m also not trying to lose any weight anymore.

I haven’t had a single herpes outbreak since my vacation in July. My weight is naturally holding steady at 158. I know that you lost a lot of weight…. and like most women (including me), you may still be trying to get those last 10 lbs off, so may be in a calorie restriction of sorts. If this is the case, you may want to try getting out of the calorie restriction for now. I know there are many accounts of minor calorie restriction leading to longetivity, but I have to wonder if this really reaks havoc on people with certain immune sensitivies.

My wife and I have been working on our health and well-being for years now, so I can suggest a few things that helped us.

* people with food sensitivities get better when they stop eating foods they react to, but develop new sensitivities by eating the OK foods too often. Until your gut is healed, it is critical to eat a rotation diet, so that you don’t develop new sensitivities. See Randolf’s book Alternative Approach to Allergies, or Philpot’s book
Brain Allergies. A rotation diet made a big difference for us, and even though we are much better, we are pretty much still on it. You might want to do another elimination diet, then do a strict rotation after you figure out what you can eat now.

* losing the last 8-10 pounds of weight depends on totally normalizing your blood glucose. When you wake up every morning at 83, and your peaks after eating are no more than 120, the excess weight will just drop off.

* people are typically iodine deficient, and getting your iodine levels to optimal (as well as enough selenium and b vitamins for your thyroid to work well) makes a big difference. See Bernstein’s book
Iodine: Why you need it, Why you can’t live without it. Also Jaminet’s book, Perfect Health Diet

* added omega-6 fats are highly inflammatory. We find our blood sugar is perfect as long as we just eat 100% grass-fed red meat, pastured soy-free eggs, and wild-caught fish, using rendered beef/goat/sheep fat as our only “processed” fats. Even a few tablespoons of olive oil will raise our fasting blood sugar for the next 3-4 days. We are experimenting with adding back soy-free pastured chicken, because that is a high o6 food even when raised optimally, but would be nice to have more options in our rotation.

* you can try skate oil from green pastures as an alternative to cod-liver/butter-oil. It turned out we were sensitive to both the cod liver and the butter oil, but the skate oil works well.

* mineral supplements guided by hair mineral analysis have been suprisingly effective, coupled with paleo, no o-6 added fats, and Jack Kruse’s leptin reset protocols. We work with Nikki Moses at mosesnutrition.com.

It is still a work in progress for us, but as long as you keep working on it and thinking about it, things will get better.

Also, thanks for the blog, lots of useful information that has filled in some more things for us!

sigh. Hashimotos here. Paleo for over a year. I am better BUT…still not optimal. Can’t get my Free T’s UP where they need to be…..very frustrating. It’s nice to not be alone.

I suffer from Hashimotos as well. What turned it around for me after doing everything I could possibly try was visiting an acupuncturist that does NAET Muscle testing. I was able to find out what my “trigger” foods and chemicals were and get treatment for them. My Hashi is 80% improved according to my blood work. I was allergic to my household cleaner, some stevia products, and cauliflower when I first visited. I was amazed at how much better I felt after only a couple of months. This was after the last 7 years of misery and every doctor telling me there was nothing wrong with me. Now, I tell anyone who will listen! Good luck!

You should look into a low oxalate form of the paleo diet. I’ve been dealing with an array of hormonal issues as well as burning mouth syndrome for a couple of years now. I feel like I’ve tried a million things and every time I come up with something new I get excited and every time it fails, I get really bummed. I just stumbled across this info last week but it looks really promising http://lowoxalateinfo.com/who-benefits-from-a-low-oxalate-diet/

AAW,

I can definitely relate to the hand-issue- and I believe I was lucky enough to solve my problem, which is why I’m replying to this old post in the first place (on the off-chance you’ll see it). Anyhow, for years I had numbness and (painful) tingling in my hands and forearms with EXTREME weakness and loss of coordination as a result. I’ve done chiro, avoided certain positions, got new bras- everything! However, back in late summer I read an article off the MSN homepage about a study inidcating that TRICLOSAN caused severe side-effects, including numbness and pain/mobility issues in the hands/feet of mice that were exposed to it. I didn’t think much of it, but then realized the cheap Stop and Shop Brand handsoap I’d been using for YEARS (started in college, possibly 5+ by then) had only one ingrdient listed: 3% Triclosan. I puchased Dr. Bronner’s Castile Soap because what was I going to lose at this point? Well, within three weeks I saw DRAMATIC improvement in my system, and nearly 5 months later I have almost no symptoms at all!!! I NEVER expected this to be the outcome, but I am now convinced that the constant exposure (chronic hand washer) to the Triclosan was causing/exacerbating the symptoms I was experiencing.

It’s a recommendation, if nothing else, that you try switching soaps… sometimes it’s the SMALLEST things that make the biggest difference!

I know this is a really old post, but I just found your site & feel relieved that I’m not the only one who feels like there’s got to be a missing link. My son’s health just isn’t quite right–we got him off gluten to cure his acid reflux & off dairy to help his aggression/mood swings. He’s a great kid now–but still just gets sick more frequently than he should. So thank you for sharing.

Also, I wanted to share this recipe for deodorant–we LOVE it & my football coach husband has used it for over 3 years & raves about it often. His clothes may stink when he gets home from August practices in south Georgia…but he does NOT. It’s kind of liquidy here in the south during most of the year (when the coconut oil is liquid), but we just put it in a shallow tupperware container & use it from there. http://bonzaiaphrodite.com/2009/08/natural-homemade-deodorant/

Hi Sarah – I realize you wrote this some time back, but I have also been trying to find my “missing link” for my psoriasis. And I thought I would take a look at adding some supplements. Back in Nov, I had my Vitamin D level checked and it was 26. I’m sure it’s even lower now, so I started this week on 10,000 IU D3 per day. I understand FCLO has Vitamin D as well – so is there any problem taking both the D3 and FCLO I should be concerned about? I’m also going to try consuming bone broth daily and increase organ meats. Also, should I try these changes first for awhile, then try adding L-Glutamine or should I just start with the L-Glutamine now?
It’s been a bit frustrating not seeing any change in my psoriasis since going AIP in the last few months, but I’m hopeful. Thanks again for all you do and this site.

FCLO has a much lower amount of D, so if you need a high dose, you will need a separate D supplement. Check your levels regularly and be careful you don’t overdose. I would recommend trying diet changes first, before beginning supplementation. – Christina, Sarah’s assistant

I started a blog the night before I went Paleo. The whole thing was an experiment to see if I could make my rheumatoid better. A few months later, I was reading back through the blog and realizing I sounded psychotically up and down. I was actually way better (normal inflammation markers, reduced inflammation, etc…), but my pain level was up and down. It turns out that when all of that inflammation went away, my ligaments were stretched out causing unstable joints, and a lot of pain. Physical therapy helped, but I still get up and down, sometimes for no reason at all. The nice thing is that my CRP and Sed Rate have stayed normal (that had never happened in 15 years and has been normal for 2 years now), but sometimes I hurt, swell, and get no good explanation for it. It’s frustrating. I love that there are places you can chat about this stuff and people with ears who “get it.” Thanks for all of your work!

Lori
http://rapaleo.momswithra.org/wp/?p=6

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