My Paleo Diet Experience (7 months in)
Hello all. I haven?t posted in a while but I wanted to give everyone an update on my Paleo experiment. I started the Paleo diet on June 16th this year after having read a book called the Paleo Solution by Robb Wolf and reading many anecdotal success stories of folks putting their autoimmune conditions into remission by employing the ?autoimmune protocol? of the Paleo diet. Was I skeptical? Sure I was, but I figured it couldn?t hurt to clean up my diet and I really had nothing to lose at this point.
First let me give you a little background on myself and my Sjogren?s issues so you can understand my issues and guage my results if you will.
My Sjogren?s issues have included the following
Dry eyes (putting in drops every 15-30 minutes)
Dry mouth
Joint pain (shoulders, neck, elbows, wrist mainly - could not exercise much without hurting a lot)
Fatigue (felt like I needed 10 hours of sleep to function each day)
Acid Reflux
Bladder Pain/Frequent Urination/Disturbed Sleep (wake up 3-4 times a night)
Prostasis
Tinnitus
Hypohydrosis (Can?t sweat)
Temperature Sensitivity (always cold or hot)
Reynauld?s Syndrome (burning and freezing hands and feet and face)
Depression (frequent suicidal thoughts)
My medicines/supplements prior to Paleo were the following: Plaquenil (2/day), Evoxac (3/day), Effexor (1), Lunesta (1), Restasis (2), Armour Thyroid (1), Flaxseed Oil, Fish Oil, Multivitamin, Vitamin D3, Vitamin B12.
Now my medicines are only: Plaquenil (2/day), Evoxac (2/day), Armour Thyroid (1), Flaxseed Oil, Fish Oil, Multivitamin, Vitamin D3, Vitamin B12, Low Dose Naltrexone (just started on Dec 18th).
Now if I had to rate my issues on a scale of 0 to 10. With 10 being unbearable pain/misery and 0 being not noticeable. Here is where I was on each issue as I progressed through my Paleo Experiment:
| Pre-Paleo | 1 month | 2.5 months | 6 months | 7 months |
Dry eyes | 9 | 7 | 4 | 3 | 2 |
Dry mouth | 5 | 4 | 1 | 1 | 1 |
Joint pain (shoulders, neck, elbows, wrist mainly) | 5 | 1 | 0 | 0 | 1 |
Fatigue | 6 | 2 | 0 | 0 | 0 |
Acid Reflux | 5 | 0 | 0 | 0 | 0 |
Bladder Pain/Frequent Urination/Disturbed Sleep | 7 | 7 | 6 | 4 | 4 |
Prostasis | 3 | 1 | 0 | 0 | 0 |
Tinnitus | 7 | 4 | 3 | 3 | 4 |
Hypohydrosis (Can?t sweat) | 6 | 3 | 1 | 0 | 0 |
Temperature Sensitivity (always cold or hot) | 6 | 3 | 1 | 1 | 1 |
Reynauld?s Syndrome | 4 | 4 | 3 | 2 | 1 |
Anxiety/Depression | 7 | 0 | 0 | 0 | 0 |
So to summarize, I feel I am doing much, much better on the Paleo diet. Overall I feel like I am 80% improved over where I was 7 months ago. For example I am no longer on Restasis and only putting in eye drops 1 or 2 times a day, versus 30-40 times per day prior to Paleo. I do feel most of the improvement is due to the diet. Some improvement was probably due to the Plaquenil as well, but I believe the diet was the big factor as I was on Plaquenil for months with very little improvement and within a few weeks on the Paleo diet things really started to improve.
On another note, I just started LDN 1 month ago and it initially made me feel a bit worse. My sleep was terrible on LDN and my joint pain started coming back. But now I seem to be feeling better and sleep is improving. I am on 1.5 mg of Naltrexone a day. I will increase to 3 mg next week with the goal to wean off of Plaquenil gradually over the next several months. I will keep everyone posted on my progress. Feel free to message me if you have any specific questions.
Best Wishes
Chris
Im so happy for you. I clearly remember your story at the beginning of last year. I bet your daughter is very happy to have her daddy back.
Yes, my daughter is really happy daddy is not sick any more. She still tries to tempt me with a cookie or a cupcake with sprinkles on top. I tell her I get all the sugar I need from her kisses. ;-)
Chris, thank you for taking the time and effort to post about your success. In good form and easy to understand. Also hope and maybe help for others who want to try this diet. I hope things keep going well for you. Lucy
Congratulations on finding something that helps and sticking with it. I've been grain-free for several months and have started on Paleo. I'm almost on the autoimmune protocol, except for that daily spoonful of almond butter I can't seem to give up. But I have been feeling noticeably better. More energy. Clearer mind. My joints are feeling lubricated - they don't grind so much when I move. My eyes are less dry - I don't have to wear my goggles all the time anymore.
My TSH, which has been jumping around lately, was measured last week at 0.02 (blood thyroid levels very high). Part of me is hoping my thyroid is healing as well, but it could also be just instability. I'm starting to cut back on cellcept slowly (1 pill out of 14/week at first) and see if symptoms come back.
Good for you and encouraging for us.
Thank you for sharing all of that! I was toying with GF and now I have been eating a GF diet for over one month. I have read about Paleo and feel better when I eat that way. I have had very bad luck with most medications. With the big diet change, most of my symptoms are already more tolerable or even gone! I have spit and snot. My eyes still aren't great and I don't sweat, but we'll see what happens over the next few months. I am hopeful, which is a wonderful thing! I stopped taking vitamin D3 after reading that it worsens dryness and things improved a little after that too.
Hi Chris,
I was following your Paleo journey the last time you posted and now I realize that you are the same Chris who e-mails me about the LDN via the Yahoo LDN group. I am glad to see that you are sleeping better with the LDN! I am sleeping a little better although much room for improvement but more importantly, I am feeling REALLY good this week. I am pretty psyched.
Anyways, back to the topic. Thanks for posting this info. about Paleo. As I mentioned in my e-mails, I have been researching it and am probably going to give it a 30 day trial but I need to set a date for that because I need it to be when I am home more so I can shop appropriately, cook, etc.
The numbers chart you posted is very helpful in terms of your symptoms.
Are you doing autoimmune Paleo or the regular version?
Great News!
Well that is great. I'm interested in the LDN therapy? What symptoms is it specifically targeting? Is it infusion? Thanks for the info if you don't mind sharing. CK
I am Gluten, Soy and Dairy free, and as close to Paleo as I can manage - and BOY does it make a difference for me. Over the holidays I definitely have slipped up - still GF and DF, but ate sugar, etc...and I am paying for it. ::)
I am sure this kind of diet probably doesn't work for everybody, but it CAN make a HUGE difference for many people.
So happy to hear you are doing well!!!!
Answering some questions:
CMNK12 - LDN (Low Dose Naltrexone) is an alternative therapy used to treat autoimmune diseases. It is very popular with MS patients. It is very safe, cheap and non-toxic drug with few side effects and can allow many folks to get off the immunosuppressant bandwagon. Read more about it here: http://www.lowdosenaltrexone.org/
Christine435 - I am on the automimmune version of the Paleo diet. I just recently reintroduced eggs and tomatoes into my diet with no problem. I will be introducing more Paleo foods into my diet gradually until I am on the standard Paleo diet. I tried adding back rice to my diet but started feeling some joint pain coming back, but it may be from starting the LDN. Rice is not Paleo at all but considered a safe starch and I was trying to gain back a little weight I had lost from a cold/flu that hit me in November. I am not super strict with my Paleo. i would say I am 80-90% compliant. I also like dark chocolate which is a non-Paleo food.
Sooki - Interesting you mention your TSH. When I started Paleo I was on 180 mg of Armour Thyroid per day based on my bloodwork results. 3 months into Paleo the doctor had to lower me to 120 mg. Now at the 6 month mark he had to lower me to 90 mg. So thyroid function is improving. I think the key to Paleo working is the increased fat intake. I eat a lot of fat. I am not afraid of it anymore. Today I ate 12 oz of bacon for breakfast, with no fear ;-). I also drink bone broth regularly which is supposed to help heal the gut.
Chris..how long have you had sjogrens?? also did you ever "slip" up on your diet??? thanks!!! also,, how long have you been on plaquenil?? thank u!!!
Hi Valene,
I started having symtoms of Sjogrens in July of 2011. By March of 2012 I was so bad that I thought I would have to go on disability soon. I started Plaquenil in March of 2012. I have slipped up on the diet plenty of times. I would say I am 80 to 90% compliant. I try really hard to avoid gluten though. I think the key to the Paleo diet working is to eat lots of fat and drink bone broth. I would say I eat 40-50% of my calories from fat. Just stick will grass fed meats and healthy fats (never trans-fats).
Even with all the fat i eat my cholesterol numbers are very low. Saturated fat will kill you is a myth based on flawed studies from Dr Ancel Keys done back in the 1950's (see here: http://articles.mercola.com/sites/articles/archive/2012/05/31/coconut-oil-for-healthy-heart.aspx).
BR-
Chris
Chris:
Thanks for sharing this information in your post. Your timing on this was perfect. I have been feeling distraught over my symptoms and the lack of any improvement.
This is a real motivator for me. I have been thinking about a diet change for a long time. Meds do not seem to make a difference. I am going to look into this eating plan and look into a few other anti infl ones as well.
The chart you provided was just the visual I needed. It gives me an idea on how to chart my own progress. Many of my symptoms are the same as you have listed. My RA has not really addressed my questions regarding SJS and diet. I put this change on the back burner too often, because of time, energy, and questions on benefits. I quess I wont know until I give it a good six month's try.
Thanks, and glad to here you are feeling improvement in your symptoms.
DeeGee
Chris:
Congratulations on your returning good health! I have been doing the same thing - gluten free, anti-inflammatory, Paleo diet and my eye dryness and mouth dryness have completely resolved back to normal. My hubby no longer has any heartburn but still has high blood pressure (in his case, too many white potatoes).
I still have problems with eggs and coffee gastrointestinally - but rice doesn't bother me. My doc doesn't want me to eat pork, but I eat lots of beef and venison.
I did suffer from Hashimoto's thyroiditis - but now, my thyroid panels are all normal! No thyroid hormone needed. Hooray!
I did try using LDN early on - when Sjs first hit - but I didn't notice much improvement - this was however before going gluten free.
Sue
Paleo is one diet that most folks seem to do well on.
My DH has eaten a mostly Paleo diet for several months and is now struggling with a variety of issues that appear similar to thyroid, although TSH1, TSH3 and TSH4 all came out as normal. He has diverticulitis. Many days he vacillates between chills and fevers.
I am curious about blood type of those on Paleo. DH is blood type A+ and not thriving. According to Blood Type diet theory, Type A people should limit their meat intake. Blood type O are recommended to eat lots of meat.
Those of you doing well on Paleo: what is your blood type?
wow you are both so lucky (sjenny too).. the mouth and eye dryness gone.. i went gf, dairy free, soy free and grain free for 3 months--and no change.. still mostly like that except for a treat of chocolate once in awhile...
is fruit allowed on paleo or is that why i am still so dry???
I'm Blood Type A+ as well, Prunella. I always thought that was bogus system, but I read more and found there are at least some correlations with blood type. But anyway, I'm improving on autoimmune Paleo. I don't like eating all that meat and often feel kind of greasy from it. Eating sauerkraut with the meat helps me digest it. I also eat coconut oil every day. And somehow my joints feel better. Everything does.
I have no idea what my blood type is. What type of test do you need to figure that out?
-Chris
can you chew gum -sugar free-on the paleo diet???
No, I don't think artificial sweeteners are allowed on paleo. They're thought to be inflammatory.
oh no.. so if im addicted to gum-it helps my dry mouth what do i do?? i thought most of us on here chewed gum? what do u do sooki?
ive tried that one type of Spry gum-sugar free and no chemicals but it is made with xylitol I think and its $$$
I still use sweet-n-low in my coffee and iced tea. I quit Aspartame and Splenda as they seem to be more problematic. Also I eat a lot of fruit each day, so don't be afraid of fruit. It is the grains that get you in my opinion. When I cheat it is usually with cheese or dark chocolate. I was chewing a lot of sugar free gum when my symptoms were bad, but nearly all sugar free gum contains aspartame, so I quit cold turkey. Luckily my mouth moisture improved pretty quickly on Paleo.
-Chris
thanks Chris.. so gum is ok on the diet-as long as its GF? i know it has aspartame -i am getting a book at the library i hope it talks about it!! i am seeing mixed things on the net!!
Chris,
I am so happy this is working for you and thank you so much for posting the piece about saturated fats not being bad!! I have been saying this for so long. I have been doing a pretty good job of sticking to the Weston Price way of eating and have been kicking around the idea of Paleo as the next step. I also eat a lot of saturated animal fats and my cholesterol is only 119!
My only downfall is white wine...sigh....
Continued healing to you!
Peace....
Flower
I am A -
I was vegetarian for 29 years and I thought doing well with that style of eating.
Funny how illness makes one re-evaluate many things.
I have been adopting most Paleo diet modifications for close to 6 months now. I have had no issues removing grains and I had been diagnosed with fructose intolerance a few years back so had already drastically cut back on fruit intake. I just CAN"T bring myself to eat red meat, fish was not difficult to bring back and I enjoy and feel very well eating it , I have always consumed large amounts of vegetables as i market garden organic veggies.
Adding good quality fats usually isn't a hard sell for anyone! Bring on the avocados, butter and coconut
But the thought of red meat makes me queasy!! ( perhaps the bloodtype? who knows!)
It has definitely assisted with fatigue and brain fog. Also my gastro issues are all but gone. I have not done the autoimmune protocol as my own farms free range eggs make up a large part of my diet. I have cut out all beans , legumes and peanuts however
So glad you are doing well!
I work with First Nations populations here in Canada( I co-ordinate perinatal nutrition programs) and this was how I first was exposed to Paleo/Primal or ancestral eating. The community has a horrific type two diabetes and metabolic syndrome epidemic and are having miraculous success treating it through a return to their pre-European eating styles.
The diet consisted of meat - deer, moose, caribou, seal and fish- with seasonal berries and absolutely no grains.It is amazing to see them return to health eating this way!It was only after I decided to do more extensive reading and research on Paleolithic/Primal/ Ancestral eating patterns that i began to see the anecdotal evidence of it's positive effects on autoimmune diseases- I was hooked!
Chrisr--what did aspartame do to you-or make you feel?? i only have it in my gum.. i wish they didnt add it... i never use splenda as it gave me stomach issues.. just curious how u feel when u take aspartame.thanks
Good job! I eat a good diet and I do think I'm better symptom-wise than most here. I'll check the Paleo to see how it compares to how I eat.
I am gluten, dairy, soy and sugar free.
Hi Valene,
I didn't notice any symptoms from aspartame, I just read so many negative things about it that I figured I should avoid it. I even found one doctor who thought aspartame could actually cause Sjogren's syndrome. I didn't find any other info to verify his theory but it was enough for me to avoid aspartame just in case.
-Chris
QuoteBut the thought of red meat makes me queasy!! ( perhaps the bloodtype? who knows!)
I had Hashimoto's and I read that eating beef is really good for the thyroid. My doc told me no pork and no shellfish.
So I eat a lot of beef and venison and am doing really well with that.
I ate chicken for years and saw no improvement in my health or weight. (I'm not crazy about fish because I haven't figured out how to cook it so it is tasty.)
I was doing really well with Paleo, Autoimmune Protocol. Then last week, I had a flare. Big dryness, fatigue, and spaciness. I'm still fighting it. Restasis drops sting again. It was a really stressful week at work and I didn't sleep very well or long. So, I'm hoping that's the reason. But it was a letdown for sure. I had been thinking of reducing meds, I was feeling so well.
So now, I'm back to the rule of staying in bed for 8 hours whether I'm asleep or not. Still on Paleo. And it sure is hard to regulate thyroid meds when you get feedback every 8-12 weeks, and it's wildly different.
I have had a few flares while on Paleo, but I have noticed they are getting fewer and less intense. Long term I see definite improvement. Try drinking bone broth regularly to help heal your gut. I just started LDN and it put me into a flare initially but it finally seems to be settling down a bit. Last night i noticed my mouth was full of saliva to the point that I accidentally drooled. Embarrassing but yet it made me very happy ;-).
I love drooling!! Thanks for the encouragement, chrisr.
What exactly is the autoimmune protocol of the Paleo diet and how is it different from the 'standard' Paleo Diet? I didn't know that almond butter was bad for us!
The autoimmune protocol removes nuts and nightshade vegetables (tomatoes, peppers, eggplant) in addition to the other Paleo no-no's (dairy, grain, legumes, sugar). In my case the nightshades do not seem to cause me issues. I would start out on the autoimmune protocol and after 3 months start adding things back in one at a time. I am on regular Paleo now with no setbacks.
BR-
Chris
hope you feel better Sooki.. keep us posted..flares stink.. :(
i was bad today and ate so much candy and junk.. i was eating very clean-pretty much paleo for about a month-guess i have to start over if i decide.. not sure..
Great News Chris! My daughter is 10. She heard about thia diet and how it helps people with auto immune and asked if we could try it. I told her I would look into it as I am Celiac and she is Sjogren's. I am glad it is working for you. Makes me want to do this for my daughter! Keep it up!