Diet. How many are gluten free?

[ohiolady]

Hi everyone. I saw my Cleveland Clinic rheumatologist yesterday.  She is the best doctor I have, always being very thorough. She has been pushing a plant based Mediterranean diet for several years but today suggested I try gluten free for awhile to see if it helps with my Sjogrens.

Thanks for any input!

Anna

[happylife]

I am partly on gluten free diet. I am avoiding wheat breads. my diet is only rice, fruits, vegetables and milk.

I am supposed to stop milk .... which i am yet to stop.

If i eat bread, i will get gas movement (no pain) in my upper abdomen just below the chest. if i stop bread this sensation reduces significantly.

[mollie carey]

I have Sjogren's and lupus and I've been on a gluten-free diet for many years. I feel like it helps with inflammation and it also helps keep the gut from becoming a leaky gut if you read about leaky gut, a lot of symptoms can come from that. When I do you eat gluten I feel very bloated and sick.

[Carebear]

Hi Anna,

I was diagnosed with Celiac disease many years prior to my Sjogren' diagnosis, so my first thought to your question was that I can't say if gluten free has helped.

But then I thought some more.  My Sjogren's symptoms first appeared three before being 100% gluten free.   I continued to become increasingly ill, experiencing such serious cognitive issues, eye dryness and fatigue that I had to go on a medical leave.

So I guess being gluten free did not stop the progress but it may have slowed it.  I have my doubts.  Anyway, that, we will never know.

My experience may be a unique one because I was gluten free for about ten years before my Sjogren's diagnosis.

[ohiolady]

Interesting....so far no one is saying gluten free helped with muscle or joint pain. I am going to try going completely Mediterranean first and then gluten free and compare results.

Anna

[Carolina]

Dear Anna

I was tested for Celiac's Disease by my neurologist in 2013, when he was seeking a cause for my profound Peripheral Neuropathy.

I do not have Celiac's Disease.

However, last year I began showing symptoms of IBS (Irritable Bowel Syndrome) and the symptoms became very severe.  I followed the dietary restrictions known has FODMAP elimination, and eventually eliminated both lactose and glucose, and all of the categories in FODMAP.  And finally wheat, since glucose free bread caused problems.

Eventually I was diagnosed with Small Intestine Bacterial Overgrowth (SIBO) (probably due to neuropathy in my small intestine).

A course of antibiotics reduced the symptoms (which are very much like IBS).  However, I still use lactose free dairy products, and avoid most grains except rice products.

In all of this, my symptoms related to my 'Sjogren's-like' condition, and my flares, etc. continued as before. 

Dietary modifications do help with the gastrointestinal problems, but have no effect on the rest of my life.

Best wishes,

Elaine

[ohiolady]

Thanks Elaine! I was hoping it would help with osteoarthritis pain.

Anna

[SjoGirl]

I have been GF for about 5-6 years. It does not help with RA or osteoarthritis pain, it does keep me from becoming bloated, irritable, and from breaking out in hives (yes, hives though oddly just a few though very itchy).

I just read yesterday that there is a new test out which looks at specific proteins in glutenous foods which may be the issue more than gluten. If I can find the article I will post it.

[ohiolady]

Thank you, Sjogirl. I am really thinking about just following the Mediterranean diet. It is good to hear from others and the reasons behind their choices. I also like to find out results from their choices.

Anna

[Sooki]

I went gluten free long ago (early 80s) for digestive/swollen face/fatigue/emotions, etc. issues. I spent a lot of time in the university medical library (I was in a foreign country) trying to find out what was wrong with me.  I read about celiac disease and gluten, and while I didn't have the celiac symptoms, it told me about a group of foods to investigate.  When I avoided them, it took care of the problems. 

But over the years, I got lazy.  In the mid-90s, I started getting big bony bumps on my hand knuckles. I remember comparing bumps with my grandmother's 90 year old friend and I won. My joints started hurting.  After awhile, I returned to gluten free and over the next two years, the bumps disappeared.  And then I again backed off (GF is hard).   

In 2007, when my joints were hurting again, fatigue, eyes and throat were getting dry, my mind was getting fuzzy,  I decided I never wanted to feel bad again and went GF in earnest and forever.  I also cut out dairy.  And over time, soy and chocolate.  For about 3 years, it took care of my autoimmune symptoms totally. 

As they came back, I saw a rheumatologist and was dx'ed with lupus and sjogrens.  I started taking plaquenil and a year later added cellcept. 

I'm still GF and DF and soy free.  I've been experimenting with diet and eliminating more foods and substituting vegetables for them. I'm now grain-free as well. The bottom line is - I can (most of the time) manage my symptoms totally by taking the meds and eating right for me. 

I have a "sometimes" food list and can now get away with some corn tortillas, some rice, or a GF cookie once in awhile.  I can feel the effects for the next 2 days (ankle neuropathy and low back pain first, then hands), but it's my choice.  When I'm eating meat/fish/eggs/beans and veggies, I feel good and life is good.  It's totally worth it!

I suggest you try it and see if it helps you.  It doesn't help everyone.  But for me, it is a dramatic and life-changing improvement.

[ohiolady]

Thanks Sooki! I appreciate your input.  I feel it will be a trial and error adventure! Hoping for good results.

Anna

[jazzlover]

If you do a Mediterranean diet .. make sure it's not high in oxalates.

I was GF most of my life... started on GF in the mid 70's. (before it was in vogue!)

I've been slipping back over the past two years because my diet is so limited. Well, it finally GOT ME. I was in SO MUCH pain, I had to go GF again.

I felt better within 2 weeks. I was also getting those same nodules on my fingers. I'm now convinced that GF makes my life much better.

[ohiolady]

Jazz lover,

Thanks!! Good information! I want to help my pain level.

Anna

[Nomad]

I've reduced sugar and gluten significantly. I'm not gluten free though. I got serious about it the end of Feb.
I have lost ten pounds (knock on wood and crossing myself) and have a little more energy.

[Skylar]

I'm gluten free but the greatest change was due to switching to a whole foods type diet (Dr. John McDougall) after reading The China Study by Dr. Colin Campbell.

It doesn't hurt to go gluten free for a month - eliminate not only the obvious sources but also hidden ones and see if it makes a difference.