Help; hopeless and sad

[lindapeto]

Thanks for all the great advice everyone! I am reading everything you sent to me.
I am taking notes to keep keep track of all your suggestions, so I can implement them into my life.
I will keep everyone up-to-date on my progress with Gluten free+ diet.
And, thanks for all the love and support, from the bottom of my autoimmune heart.
Love,
Linda

[Rachel F]

Hi there!
To add my 2 cents- I have read that many Sjogren's patients are allergic to wheat, which I am. My brain fog cleared DRASTICALLY after I stopped eating gluten. I still struggle with concentration though when I am tired. 

I think you got great advice from all the others- it is certainly possible that there is some neuro activity with your disorder which nobody likes to hear, but I think it is important to remember that our bodies do and can heal after degenerative incidents. I lost feeling in my right foot for several months, but feeling did return. Who knows why?  I'm just thankful.
Take care of  yourself as best you can.
Rachel F.

[Deb 27]

Sorry you are so afraid over the brain fog. There are others here who have had this longer and know more than I do but I did want to add that when I can't think, my thyroid is usually too low.

Also, my rheumy told me to follow an anti inflammatory diet and to eat a lot of cherries. So, some Drs. believe in anti inflammatory diets.

My pain is worse when I eat  nightshade vegetables or wheat, so I stay away from these. But, this is after trial and error for me.

I hope you find the cause of the brain fog and find something to help. It's scary when we can't think.

[quietdynamics]

Some SJS patients are sensitive to Gluten, but not all.. so should not be presumed.
I just got the results from a celiac disease panel, am am negative.

Here is an article about fiber.
Fiber-Famished Gut Microbes Linked to Poor Health (Scientific American)
While probiotics receive more attention, key fibers remain the workhorses in maintaining a healthy gut microbiome
March 23, 2015 |By Katherine Harmon Courage
http://www.scientificamerican.com/article/fiber-famished-gut-microbes-linked-to-poor-health1/?WT.mc_id=SA_DD_20150323

I was basically doing a Mediterranean Diet before the book hit the shelves.

Cognitive dysfunctions came with the disease process and did for me hit hard.

- unmanaged chronic inflammation and all that entails.
- non-restorative sleep

[trejonina]

Yes Linda we are what we eat. Do your research on inflammation and disease, an acidic diet can be a factor in cancer, (a nobel prize md. showed this),an alkaline diet can prevent it and  many diseases ,is healthier. Don't listen to dr.s on this and do your research, the pharmaceutucal companies don't want drs or the public to know this, they'd lose billions.Read Stopping the Clock by drs Klatz and Goldman.

[Head2Toe]

My digestive system reacts pretty violently to too much fibre - so I'm careful to find a balance.  Oatmeal, raw veggies, too much fruit (which is shrinking over time) can cause me to ensure I don't stray far from a bathroom.  It wasn't always that way.  My digestive system changed radically during one bad 'attack' I had about 15 years ago when I could hardly eat anything without running to the bathroom.  My diet had to change radically, and has never been the same. 

I'll take white bread over most whole wheat bread any day - although I don't eat as much bread as I used to.  I can't tolerate yogurt or sour cream, but I can drink milk, eat limited amounts of cheese, and take cream in my coffee.  Probiotics (and I've tried just about all of them) - forget it. 

If I don't eat protein - I feel like I am starving to death within two hours after a meal.

If I've learned nothing over time, I've learned that regardless of what the books or greatest diet gurus say - listen to your body.  It has never read a text book or a scientific study, but it will tell you very clearly what it's willing to tolerate, what makes it feel good, and what you should avoid.

[Dawnmist]

Head2Toe is right - pay attention to what your own body is telling you.

I'll add to that - when testing diet changes, don't make a ton of changes at once. It makes it really hard to identify which change(s) helped or hurt - and if you get some that would have been beneficial on their own but combine them with some that were not good for you, the end result is that you may not realise either. It can also take a month or two before changes in diet really start affecting you - and the improvement/decline can be very gradual (sometimes only really becoming obvious when you try to revert to the previous diet and your body, having had a break from the food, decides it really will object to it now). And there are a lot of foods that contain ingredients that you wouldn't normally recognise as being a particular item. For example, wheat gets hidden as "thickener", "hydrolysed vegetable protein", "maltodextrin", "dextrose", "dextrin", "starch", anything from the 1400 number range - which are named for how they've been processed instead of what they came from, so a starch/thickener labelled as "1422" could be from any one of wheat, rice, corn, potato, soy or tapioca - if they haven't declared which it may even vary and be one source one week and a different one next week!

Gluten is also not the only component of wheat that can cause people issues - just the most well-known/tested one, which means you can test as non-coeliac/non-gluten-allergy but still get issues from it. I'm speaking from personal experience here - I can eat Rye/Barley as much as I like with no noticeable effects (and they both contain a form of gluten), but if I get a meal contaminated with wheat by even just a "dirty spoon" 6 hours later I end up with 2-3 days of extreme fatigue (it's a struggle to get to/from the toilet), muscle weakness, muscle tremors, movement oddities (becomes jerky instead of smooth), slow/slurred speech, and inability to think/respond to people (pretty much full-blown dementia at the worst point). If asked an unexpected question (like "would you like a cup of tea?"), it can take me up to a minute to work out that someone spoke to me, asked me a question, what the question was, how thirsty I actually felt, and to respond to the question. It was (accidentally) double-blind tested when my GP prescribed a "gluten free" medication that actually contained wheat starch which had been processed in such a way as to remove the gluten...and 6 hours after taking the first pill I went looking for where the contamination had come from and found the wheat starch on the ingredient list. My husband took to calling wheat "zombie juice", because it essentially turns me into a shambling moron for several days.

It wasn't so bad when I ate wheat all the time - just a lot of fatigue that I didn't know where it came from (cutting it out pretty much halved my average level of fatigue), but after cutting it out my body says absolutely and unmistakeably "nope, not tolerating that crap anymore".

It's also really beneficial (although I admit it's tedious too) to keep a food & symptom diary when you do test diet alterations - it helps to highlight any gradual changes (both good and bad), and can be used later to go "hmm...every time I eat X, Y symptom(s) occur Z time later...".