Sjorgrens I appear to be allergic to just about everything

Hi Pam,

No I don,t have any fertility problems.  After my last child was born in 1984 I had 10 years of irruglar periods that was about it. This also started my allergies to Pencillin, now the list is much longer.  I do plan on joining the British Sjorgrens, can you inbox me the numbers please.

thx Mandy

The name is the BSSA the organisation for those in the UK with Sjögren's Office 01214780222 I am Pam Newman of British Sjogrens the FB group run by BSSA members for support and advice. My consultant is the President Dr. E Price look for me or Ken Wagner to help you 

Hi Pam

Have you got any immediate advice about diet. I feel terrible today. I jhave gluten, yeast, wheat, soy cows milk intolerance. I am having gluten withdrawal symptoms.

I detest the taste of GF bread. What can I eat that is easy to get at.

I have subclinical hyperthroidism as well as Sjorgrens. I am having a flare up at the moment.

Jean

Jean

Hi Tracy and Mandy

Do you know where I can buy the PALEO diet books from please?

Are they available in the supermarkets etc?

I cannot use any perfume either. I can only have aloe vera soap and even then have to avoid using it on sensitive areas of my body. Same with deodrants, talc, shampoos and hair conditioners.

 use a laundry gel for sensitive skin from M and S .

Stopped using furniture polish etc because I always got severe headaches and nausea.

Still do.

I avoid eye make up now.

Mascara and eye shadows no matter what make or shade definitely causes swelling and headaches.

DIET.

I feel that I cannot face up to going on this or any other diet but I know that I must in order to feel better.

I will feel differently about it tomorrow I am sure. It is because of not yet eating anything today that I feel a sense of deprvation etc of course. My hubby has just gone out to do  the food shopping so when he returns I will quickly snatch a banana before I faint!

I wondered where you bought your book on Paleo diet from?

Please PM me if you wish. Thanks for everything I feel as if I am getting somewhere at long last . Nearly two years is a long time to feel ill and to be fobbed off by drs.

Hi Jean - you can order one on amazon. It comes very fast. Otherwise, google paleo and you'll find a TON of information.

I felt like you right before I started paleo. Exhuasted, in pain, burning eyes, sore wrists and shoulders and the never ending dry mouth, etc. 

After one week on paleo I felt better, the 2nd week even better. I still have the symptoms but barely. 

Let me know how it goes.

You can do it! Order the book and google paleo recipes. If you google "paleo diet 101" you'll find a page that will give you the basics to start with on your journey. The book is called "the paleo approach" by sara ballantyne. 

Hi Tracy,

I have been having a hard time with this since Sept 2014, and my symptoms are no better.  I have the paleo diet book but have not looked at it yet. But I will do.

thx Mandy x

Mandy

I am intolerant to gluten, milk, soy, yeast and wheat. I will join you on this paleo diet. Perhaps we can support each other because going on a diet can be very stressful. I am ravenously hungry and do not know what to eat yet I must.

Kind regards

Jean

Hi Mandy - I think you may be pleasantly surprised. 

If you can, check out the paleo approach. I had no idea the impact certain foods can have. As I understand it, we're predisposed to autoimmune diseases and certain foods can prevent it or make it better if you do have one.

Reading about about it changed my life because it answered so many questions about autoimmune diseases. I went through a really hard time over a 4 week period -- exhausted, eyes hurt, dry eyes, etc. and felt hopeless as each flare seems to get worse.

Initially, I started juicing which helps but it's labor intenstive and less satisfying.  Now I'm making roasts in my crockpot with beets, squash, and other wonderful vegetables. And I have leftovers so I can just heat something up when I'm too exhausted to cook. 

The other chalenging thing is that most md's are clinical which is great but not one doctor recommended looking at food and the disease holistically food, lifestyle, etc. 

At the end of the day, we have Sjogrens. For some it goes into remission and for others it hangs on. We can take control by fighting back with how we eat. 

I want to hear how it's going! You've go tthe book so take the next step. You can do it!.

 

Hi Jean - good idea. 

Please let me know how it goes! I'm excited for you. I'm having a good time planning menus. I do batch cooking on Sundays so I have meals for the week. The nice thing about the paleo diet is you can eat as much as you want. The only hard part for me initally was eating 3 meals a day because I wasn't used to it.  But now my body loves it. 

Tracy 79802,

I couldn't agree with you more. Changing my diet has been a life-saver, and now, after two years, I feel like I have no problem enjoying wonderful healthy meals and no longer feel so deprived without sugar, dairy, wheat, etc. My symptoms have diminished and I am feeling great these days. I cannot say enough good things about changing my diet. I never did take any medications either. I opted for radical diet changes instead and it has worked for me. I will say though that it wasn't an easy change, I think I succeeded because I was desperate to get better. I'm glad to see that changing diet is helping others too. Best of luck with your continued success in overcoming this autoimmune disease!

Thanks Tracy.

I would be very grateful for any ideas and recipes to try to kick start the thyroid.

I understand that the thyroid needs adequate levels of  protein to keep healthy.

Paelo diet sounds very promising I will look into it in more detail.

I am glad that hyou are feeling better than you were.

I look fwd to hearing from you.

Kind regards

Jean x

Hi Morelia - I'm encouraged to hear your experience! I too was desparate and willing to eat beets and squash! lol. Seriously, my body loves the diet and am grateful to have something to works towards.

Good for you for not taking any medications. I think eating well makes the world of difference. I have my 83 mom eating healthy with me but we both cheat once in a while. 

Best of luck to you too!

Tracy.

You're welcome, Jean, and thank you. I was diagnosed about 6 months ago and my symptoms were getting worse and I was feeling very down.

It sounds like you're part paleo since you can't eat gluten, soy, etc. so hopefully this should be easy for you. If you eat sugar it's one of the first things you should give up. 

If you can eat organic great. Either way, buy all of the protein and fresh vegetables you want (especially root vegetables like beets, turnips,etc.). Frest Fruit is fine in moderation. 

I'd recommend a big roast in a crockpot with beets, sweet potatoes, onions and green vegetables and eat WHENEVER you're hungry (avoid night shade veggies like eggplant and tomoatoes, etc.). I also sautee liver 1 x week now. Some people don't like it but my body loved it.

If you can, pick up the paleo approach book. You'll learn a lot about autoimmune diseases and how eating certain foods helps / hinders - particularly for thyroid issues which usually accompany an auto immune disease.

For ideas I've been googling paleo recipes for the paleo 30 day elimination diet. It's the same as the paleo diet only cutting out soy, eggs, nuts, etc. After 30 days you re-introduce one at a time to see how your body responds. 

Overall, it's personal preference. I'd recommend making a lot of it to have on hand to heat up. If you're ravenous a crockpot is perfect. I've been using my crockpot a lot simply because it's easy and makes a lot to ensure I'm eating healthy 3 x day.

I'm very happy to share any other information or tips with you - anytime.  One thing to consider would be a soup with bone broth. Google it. It is very healing physically. 

Please let me know if I can share any other information.

Be patient and gentle with yourself. And the best of luck to you. I hope you're feeling better.

Tracy

Your welcome. Just in case you are looking, I have fund that "real" coconut cream and milk make an excellent substitute for dairy in many recipes. One day at a time. After two years of eating this was my kitchen and pantry only contain things that are good for me. I do have cheat days, but when I do, I take enzyme pills that help me digest the food easily. Best of luck!

Hi Jean,

Happy to give this diet a try, though I am a fussy eater and don,t like loads of vegetables so think I may struggle a bit.

Mandy x

I know what you mean. Will reply properly later. Got a headache. Jean xx

Thanks Tracy. I will definitely take your advice. Please could you tell me as a maer of urgency what I can have for breakfast. I am intoerant to wheat, gluten, soy, cows milk yeast I am only allowed moderate amount of vitamin K a day because I aam taking warfarin.

Moderate being  couple of helpings of a green vegetable. Some are higher in Vit K than others.What a nightmare.

Many thanks

Jeanh

Very good point, Morelia. One thing I learned was to aid stomach disgestion with probiotics. I had my glall bladder removed 3 years ago so I'm taking ox bile now too. HUGE difference. 

 

What is ox bile?

I hd a cholecystectomy in 2003 as I had a large gallstone. Could this be responsible for the thyroid problem and query Sjorgrens syndrome?

I had never heard of ox bile until just now.

In what ways has ox bile made a huge difference to you?

Thanks.

Jean

Any ideas about gluten free, wheat and soy as well as cows milk free advice breakfast dishes please.

Have not eaten today and it is 3pm in England. Gluten, wheat, soy, yeast and cows milk intolerant. Have to watch Vit K intake as on warfarin. Jean

Hi Jean - ox bile has helped tremendously! I had forgotten than I had my gall bladder removed (what can I say). When I eat a meal higher in fat I take 2-3 125 mg tablets right before or after. After reading the paleo approach I realized that my stomach isn't processing effeciently w/out a gall bladder so augmenting digestion is a good idea because w/out a gall bladder (or high functioning gallbladder) it puts too much strain on the liver and as a result more bacteria forms than our bodies can process.

Ox Bile is a supplement that aids the function of the Liver and Gall Bladder. This is an essential product for someone who has had their gall bladder removed. It helps to produce more bile to digest, process and disinfect fats and proteins.

For me it processes food more efficiently - I'm more regular and much less bloated. It also helps to reduce gut bacteria which can create other issues - like increased Sjogren's symptoms which can lead to other issues.

I don't know about your situation but overall it helps to reduce gut bacteria which, without a gall bladder, creates more of it.

Here's what i learned about autoimmune diseases - we're predisposed to autoimmune diseases and how we eat will determine if we actually get it. For some it can be avoided by eating paleo, for those of us that have it we can manage symptoms through a heathy diet. 

My Sjogren's won't go away but I can lessen the symptoms through a paleo diet, pro-biotics, and ox bile. 

Up until two weeks ago I was feeling pretty awful and discouraged so I've been doing a ton of research.

Thanks to the gracious people in the SJogren's forum who provided tips on eating paleo I've been able to manage the symptoms. My body loves it.

THANK YOU!!!!!!!

I have just eaten a gf tuna sandwich. I hate that Gf bead it tastes like glue.

I am drinking tap water.

Feel terrible at the moment.

You're welcome, Jean.

I'm sorry you're not feeling well. The symptoms can be pretty awful.  If you can, move away from GF breads, etc. and shift to protein and veggies. It will give your body a chance to heal.

Take care and let me know how it goes. 

Thanks Tracy. pls can you suggest a safe bread? I llike the occasional sandwich esp if I feel too de motivated to get a mmeall ready or ned something to at pretty quickly. I am dying to ea a toffee muffin , sponge with toffee and chocolate in it.

Pls can you uggest a breakfast for me, i keep worrying all the time about food. No use going to the ds they are not good dieticians!

jean

Hi Jean - I'm sorry for taking so long to respond. I haven't been on here in a while.

I'm sorry but I can't recommend a bread because I don't eat it anymore. 

My meals consist of protein, vegetables and fruit. 

Yesterday, I made a really good chicken, kale, zuchinni and black bean soup that's healthy and satisfying. 

For breakfast I sometimes eat eggs, meat, and spinach -- or whatever I had for dinner the night before.

For me, it helps to batch cook on Sundays so my meals are made in advance. That way I'm not tempted to eat poorly. 

Hope you're feeling better.