My mum has sjogrens syndrome, the main symptoms for her being dry eyes, dry mouth, tiredness and brain fog (I think).
After a good experience for me back in 2007 eliminating grains for a while to help get over glandular fever and get rid of plantar warts on my feet, I have been encouraging her since then to trial going grain free to see if it improves her symptoms. Since then the paleo idea has emerged and the science seems convincing to me.
My mum instantly responds to any suggestion she removes cereals from her diet with the response "but if I don't eat bread or my porridge in the morning, I'll get constipated". She hates being constipated (although I suppose we all do) - she doesn't take calcium despite poor bone density because it makes her constipated and she won't take supplements to assist with constipation.
She also says things about having to eat a biscuit before bed with her cup of tea.
Are there any sjogrens sufferers here who have had some really good results in getting rid of their symptoms? Particularly the dry eyes and fatigue, as it stops my mum being able to go outside and just take a walk a lot of the time due to the wind.
It'd be helpful to know as well the best way to avoid constipation.
asked byPatrick_21 (0)
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on June 02, 2013
at 07:43 PM
I did test positive for sjogren's through lip biopsy. I have eliminated gluten and I experiment with Paleo dishes. I take Vitamin D-3, 5,000 in winter less in summer, a probiotic slenium 50 mg. and metamucil. I exercise every day, running mostly. I felt awful when I was diagnosed 5 years ago. I even went on plaquinel for a year. After making all of the above changes, I began to feel better and I stopped the plaquinel last year. Best of luck to your Mom!
on June 01, 2013
at 06:38 PM
She has a choice: a biscuit with tea, or fewer symptoms. Which is better, which is worse? Her choice.
Constipation. I find if I eat a decent amount of veggies, my constipation goes away. I have a choice there. Maybe for her too?
on June 01, 2013
at 06:23 PM
Sjogren's could also be responsible for her constipation. It could be drying out her intestines. I'd rely on magnesium. About a 1/2 teaspoon of Epsom Salt dissolved in water whenever you're plugged up. Aside from that, a bit of starch should get you moving for Sjogren's-induced constipation. A bowl of white rice is better than bread or biscuits.
Also, do autoimmune Paleo. No gluten, no dairy, no egg whites, no nightshades. That and at least 75 -- 100 grams of natural carbs per day. That should reduce her symptoms to such a low level that most Sjogren's symptoms should be barely detectible. If you still have problems, then you're looking at LDN. Can't go wrong with LDN.
on June 01, 2013
at 01:58 PM
Hi Pat! I have never officially been diagnosed with Sjogrens, but tested positive for the antibodies after having a "flare up" a few years back. The flare included awful fatigue and dry mouth/lips for about 4 weeks. Since then I haven't had ongoing symptoms, so my rheum won't officially diagnose me, which is fine with me! I see my rheum every 6 months and he is always impressed that I have stayed fairly symptom free. I didn't know about paleo in the beginning, but I was already mostly gluten free. after the flare, I started to avoid excessive "gluten free" foods. I felt good, but learned of paleo almost a year ago and now I feel even better! I honestly feel that getting the gluten and other grains out has helped this condition not to progress.
I have had problems with constipation, but it usually goes away when I eat clean paleo, unless I'm super stressed. I do take a NOW probiotic and eat fermented foods such as 'kraut and kombucha. One of my favorite constipation foods is beets! I roast mine, but you can boil them and then load them up with butter, not that I think the beets need tons of butter, but it helps the process:)
To help with the transition, you may want to use coconut products, they are high in fiber. And also getting more good fats will help too. And in this situation, I think paleo treats can be really helpful, such as a paleo biscuit or cookies or even granola she could use like cereal.
As with any condition, I think the most important thing is controlling inflammation. I have done a lot of reading to figure out what can help me, and I really believe that cutting out grains, legumes, excessive sugars and most dairy really helped me.
Has she had her Vitamin D levels checked? I have read low vit D can make symptoms worse.
Best of luck!