3

votes

Paleo for Sjogren's and Reynaulds Disease

Answered on August 19, 2014
Created August 11, 2012 at 2:47 PM

Hi all,

This is my first post, forgive me if I do it badly :-)

I am a 45 year old male, athletic and healthy up until last couple of years. I have been on the Paleo Autoimmune diet for 2 months now. After the first couple of weeks on Paleo I started to feel much better than I had been. Last winter I was diagnosed with Sjogrens disease which came on pretty rapidly for me in a few months time. My main symptoms/problems were:

Dry eyes (have to put in drops frequently throughout the day), Dry mouth (taking Evoxac to produce saliva so I can eat), Joint Pain (all over body), Fatigue, Peripheral Neuropathy (probably Reynaulds Disease), Bladder pain/frequent urination, Disturbed sleep patterns due to bladder and dryness.

I am also on Plaquenil for the Sjogrens (for about 5 months now)

Within 2 weeks of starting Paleo I saw marked improvements in my joint pain, my mouth dryness, and my energy. So I became very optimistic that I could in fact get better or maybe even go into remission. Also the Plaquenil could be starting to kick in at this point so I am not sure it is all due to diet.

So now I am on week 8 of Paleo Autoimmune Protocol and I seem to have a set back. My Peripheral Neuropathy has gotton remarkably worse (after not bothering me for a couple of months). Hands are freezing cold at work where the temperature is 75 degrees. Later in the days hands are burning or tingling. Also eye dryness is still very very bad.

I am wondering how I should tweek the diet to improve the Neuropathy.

Here is how I am eating now:

Breakfast:

Beef or Pork, some mellon, iced tea (unsweetened)

snack:

a fruit (peach, bannana, or plum), water

lunch:

Beef or fish, vegetable side, fruit, iced tea (unsweetened)

snack:

2 pieces of fruit, water

dinner:

beef/fish or seafood, veggies, couple pieces of fruit, water

before bed:

bone broth

Notice I eat a lot of fruit. I am eating no nuts, no nightshades, no dairy, no grains. I feel like I need the fruits to keep my calories up. I do not want to lose any more weight, my bodyfat is at 9%. I do still use a little bit of cajun spices on my meat and fish also. The only processed foods I eat are mustard and vinigarette dressing.

So I love my fruit but maybe it is hurting me. Also I am starving without it. Also I can't really stomach eating a pound of meat at each meal, and veggies just do not satisfy my hunger. How can I keep my self satisfied without so much fruit?

What tweeks should I do to improve my disease?

-Chris

559aa134ff5e6c8bcd608ba8dc505628

(3631)

on May 24, 2013
at 06:29 AM

why so low carb? i found lower carbs to be quite drying. you could think about adding sweet potatoes, squash, plantains, maybe even some white rice? if nothing else, i think it will help the coldness.

559aa134ff5e6c8bcd608ba8dc505628

(3631)

on May 24, 2013
at 06:26 AM

why so low carb? sweet potatoes, squashes, plantains, maybe even some white rice? i think it will help the coldness, if nothing else.

D33a8d5f095a8532ddf7a0d6c27bfe63

(578)

on May 24, 2013
at 04:23 AM

How much LDN are you taking and how much L-Glutamine are you on? I too have been taking LDN 3.5mg and just started on the L-Glutamine at 2mg. By Lupus ANA do you mean anti-DS DNA or ANA, which is general for all connective tissue related autoimmune diseases? My Sjogren's antibody did go down but I'm still ANA positive. And my dry eyes have gotten worse. However, my joint and tendon issues have remarkably improved. It seems that it's highly individual.

E36cb992cf0a5eba8b97a359c15f38b3

(4347)

on August 12, 2012
at 12:29 PM

I don't see mentioned that you eat any added fat. Maybe you'd feel more sated with some fat to help the calorie count?

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6 Answers

1
67871ef2326f29da48f1522827fc0f80

(704)

on May 24, 2013
at 02:25 PM

I have congenital lupus and Raynaud's amongst other things...

I follow (most of the time, when I slip, it's obvious that I REALLY should not eat nightshades and garlic or dairy but I crave them like crazy) the autoimmune protocol. When I say most of the time, I mean I'm 100% 'on' for months at a time, then slip and usually takes a couple of weeks or even months to get 'clean' again. Having Celiac, I certainly do NOT indulge in gluten EVER.

I've been doing this over 2 years (gf and nightshade, garlic, citrus free but I still eat eggs as elimination testing hasn't shown a problem with them) and dairy free for decades and I've never seen improvement or worsening with Raynaud's. I hear experiential evidence of Paleo helping but when I'm 100% clean for 3 months and it's the same and somebody else goes Paleo and 3 days later they claim improvement, I'm left believing it's individual (like most things).

It looks like you're rocking the protocol, so I'm sorry but you may be like me and just not get improvement there. If you find something that helps, please come back and share!

1
79a2d81fdc5f43d600316999ba7d0045

on May 24, 2013
at 01:09 AM

I have Sjogren's with symptoms similar to MS. I use Dr Wahl's diet and it works. Been using it for 9 months now. I had symptoms of walking with difficulty, legs felt like noodles, reflexes in legs and hips felt constantly like someone was doing the reflexes exam on me, yet over and over, it was relentless. Also had involuntary movements of limbs. Most of this is gone now. And my saliva production is greatly improved, though not perfect. I still have some days with fatigue and minimal dry eye, but I'm still adding things from Wahl's. It really took me some time to get her things all incorporated in my diet. For me, I've recently found red cabbage seems to work better than kale for my movement issues. Not sure why that is. But I do still have some occasional kale.

1
16e617676c5ac710e5235e0b773edc0b

on August 11, 2012
at 05:36 PM

I used to have peripheral neuropathy in my fingers and toes and found that supplementing a B-100 complex and magnesium and eating a low carb paleo diet completely reversed it. I don't really eat fruit though except on rare occasions so I'm not sure if that's part of it but I'd highly suggest supplementing to get rid of it.

1
363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on August 11, 2012
at 03:37 PM

Hi Chris,

Last year I was having some weird symptoms, breaking out in hives, and experiencing dry eyes, along with having nausea after every time I ate. It came out of no where, but followed a huge stressful period in my life.

Among other things, I was found to have low positives for Lupus and Sjogren's. I saw an integrative physician in NYC after learning about LDN (low dose naltrexone) and its effects for people with MS and other autoimmune conditions. I started taking it about 9 months ago, and since then, my Lupus ANA is 0 and my Sjogren's antibody numbers have been cut to below a "positive diagnosis" and I rarely have dry eyes now. The physician (Dr. David Borenstein, does distance consultations) also recommends L-Glutamine supplementation to help heal up the gut lining, and of course said to cut out all gluten, which I had already done.

There are tons of helpful websites about LDN out there that can provide way more information, such as http://www.lowdosenaltrexone.org/ but there are plenty more out there.

Good luck, I hope you feel better soon. Oh, I also recommend reading up about Dr. Terry Wahls. There are some youtube videos about her and her dietary recommendations, including how she overcame MS. It is pretty much paleo but with LOTS of vegetables, which I happen to like.

D33a8d5f095a8532ddf7a0d6c27bfe63

(578)

on May 24, 2013
at 04:23 AM

How much LDN are you taking and how much L-Glutamine are you on? I too have been taking LDN 3.5mg and just started on the L-Glutamine at 2mg. By Lupus ANA do you mean anti-DS DNA or ANA, which is general for all connective tissue related autoimmune diseases? My Sjogren's antibody did go down but I'm still ANA positive. And my dry eyes have gotten worse. However, my joint and tendon issues have remarkably improved. It seems that it's highly individual.

0
75d65450b6ff0be7b969fb321f1200ac

(2506)

on May 24, 2013
at 12:18 PM

Hi. What sort of veggies do you consume? I'm a strong believer that gut damage ("leaky gut") is the underlying cause of autoimmune issues in many if not most cases. To heal your potentially damaged gut I suggest you do not eat starchy veggies (potatoes, sweet potatoes,..) for three months to see if your symptoms improve. This is especially true if you have any sort digestion issue.

Since you are experiencing issues that seem to go beyond standard symptoms of your autoimmune diseases I suggest you work closely with your primary care physician. I would get appropriate tests to check out your thyroid/adrenals and kidneys. You might be experiencing a failure somewhere up the endocrine system that is causing problems downstream. Iodine deficiency might be factor. Yes, the Paleo diet is wonderful but it might not be enough for you.

_Lazza

PS - also read Perfect Health Diet (Jaminet). Great book. The discussion on supplements is required reading for those on a Paleo diet.

0
D33a8d5f095a8532ddf7a0d6c27bfe63

(578)

on May 24, 2013
at 04:35 AM

I have Sjogren's and my symptoms, especially dry eyes and throat, did improve once I went Paleo (that is, gluten, dairy, egg white and nightshade free). However, my antibody levels never decreased and my joint and tendon issues continued to get worse until I tried LDN. Dropping bottle caps and utensils was becoming a problem and I was also losing some manual dexterity. Paleo stopped some of the symptoms but some were clearly getting worse; I never tried any corticosteroid medicine such as Plaquenil.

LDN did not solve all of the symptoms but once my dose hit 3.0 mg or so, I stopped having joint soreness, hands that go numb at night, and serious peripheral neuropathy issues. For one, my dry eyes occasionally get worse but I accept that as a tradeoff.

This may be highly individual but I strongly encourage trying LDN if you think your conditions are worsening. I know that having conversed with lupus and Sjogren patients that peripheral neuropathy and nocturnal hand numbness are specific to these autoimmune conditions. As for Raynaud's, it would be secondary Raynaud's if you have it but many people with Sjogren's also have Hashimoto's, which may display similar symptoms.

If you hit the wall with Paleo, you might want to give LDN a try. My only regret is that I didn't try it sooner. No strong side effects except occasional insomnia, which you can deal with by taking it in the morning. Also, if you take a bit more than you need, you can definitely feel it. I get it from India with no prescription and it costs me about $50 for a year's supply of Naltrexone, which I dissolve in water to render it low dose.

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