This is so true.....How conventional medicine got Auto-immune diseases all wrong

[litliwlowa]

And for those who are alone it is even worse without support.

Yep, that is me, and yes it is much worse without support. But then it's all relative I suppose.

To topic: I believe that as so many of us do also have gut or gastro related issues, that there has to be a correlation. I've been suffering with GERD since mid 1990's. MS suspected late 1990's. Hashi's 2008 and then somewhere in between the two fibromyalgia, MCS, etc
Sjogrens being the most recent to announce itself.

I have given much thought into this whole topic as to when "diet" changed for me, when "disease" unrelated to MVA started for me, and I can say for certain in my own personal experience that diet is reasonably a factor for me. Has to be. I have no immediate relatives with AI's. One aunt with RA, but that isn't immediate family (and when I was a wee thing she was up there in her 70's). Another aunt with vitiligo, but she is a half-aunt (whole person but half aunt).

I realize some may disagree, but I reference my own awareness of when I got away from healthier eating, onset of GERD and such, so I think in my personal situation - highly probably started with my gut.

[SjoGirl]

While I am supportive of docs seeing us as a whole, having one cancer type specialist for AI's won't necessarily solve the issue. A friend at church has kidney cancer and has learned that not all oncologists are as versed in it as others. In her case a specialist may be her best bet for survival.

You are correct that medicine has become very specialized. I consider it a blessing and a curse. A curse because one sees so many dos some of whom only see the issue that fits their perspective. The blessing, if I have a specific ailment or organ that needs fixing, I can get it fixed as I did with my gut.

However, getting my gut in order didn't make my SJS go away as it's a systemic disease that is happening at a cellular level. The gut issues may have triggered it, and fixing them can mitigate symptoms, but it would be unexpected for it to go away. The again, miracles happen and there's still a lot that no one knows about the body in general and SjS in particular.

[litliwlowa]

However, getting my gut in order didn't make my SJS go away as it's a systemic disease that is happening at a cellular level. The gut issues may have triggered it, and fixing them can mitigate symptoms, but it would be unexpected for it to go away.

I agree. I believe that once the damage has been done at the cellular level it is not reversible - considering we are talking about the immune system in particular regarding AI's.

Once the antibodies are there, they don't "go away". However, on the premise that AI's begin in the gut, continuing to do the same old things the same old way can only keep stirring the AI pot so to speak. Keeps those autoantibodies stirred up.

I came across a very interesting infographic (wish I knew what I did with it) that was very very interesting. Celiac, for example, is only ONE of several conditions (AI's) that begin in the gut ( a surprisingly small percentage at that) and that the more prevelent gut related diseases don't even have gut related symptoms. And the common theme in the center of the infographic was gluten smack dab in the center.

[littleone]

One of the foremost experts on leaky gut is Dr Fassano from MGH in Boston. From my observation, I can tell you that the researchers are paying big time attention to the human biome (ie a persons gut flora)which changes (after a GI infection, for ex) unlike the genome which is fixed. 

He is working on a commercially available test for leaky gut (zonulin) that will likely elucidate a lot of his thinking. He does not believe leaky gut is solely responsible for AI but that a leaky gut in concert w a genetic predisposition and environmental trigger are the three underpinnings of the AI epidemic.

Here is a video.  At around 6 mins he starts to synthesize his thoughts on leaky gut and the poss link to AI disease (including ms, neuropathy, diabetes). And a couple of other links.

functionalmedicine.org/conference.aspx?id=2675&cid=0&section=t303

http://www.ncbi.nlm.nih.gov/pubmed/21248165

http://www.direct-ms.org/sites/default/files/Fasano%20intestinal%20barrier%20autoimmunity.pdf

I'm a big believer that this is going to flip the AI paradigm on its head (on the cellular level) but if nothing else it is food for thought!

And for anyone who suspects they have intestinal permeability I'd check out the FODMAP diet. It is well studied out of Australia: med.monash.edu/cecs/gastro/fodmap/low-high.html

[jazzlover]

THANKS, littleone! Funny that my brother used to call me that! Sweet name.

I totally believe that our guts can be healed. Our bodies can regenerate. Takes work, but it is possible and something to work toward.

[littleone]

  Anytime!  I think this could be promising. Just wish we could understand it yesterday already 

[machenza]

THANKS, littleone! Funny that my brother used to call me that! Sweet name.

I totally believe that our guts can be healed. Our bodies can regenerate. Takes work, but it is possible and something to work toward.

I really hope we can heal the gut. I will start a draconian program in mid May in the hopes to stop/delay, or even reverse some of te damage.

BTW, how do you manage your IC? I had that helped by Zyrtec and supplement but since the SICCA I had to stop it all....

Nellie

[jazzlover]

machenza... Have you tried Vistaril or Atarax for the IC??

Keep us posted on what you do for the gut!

[SjoGirl]

I can attest that it is possible to heal your gut. I was very ill with gut issues for several years, including emergency room visits for norovirus and some undetermined cause for stomach issues then found I had an H Pylori infection.

The infection was treated with antibiotics, which even the holist practitioner I was seeing at the time agreed I needed to take. I then eliminated

gluten (no more gas, bloating or constipation),
legumes (used to be able to eat them, now they give me Rosacea),
dairy (also a Rosacea trigger), and
simple sugars except small amounts of candy (my sugar was 110 when this all started, now even having eaten before blood work it's in the 80s or 90s),

For a while I avoided corn, but in small qualities it's not an issue. Doing these things has been a big help, but has not, unfortunately, stopped the progression of dryness or increasing fatigue.

That said, I'm far more functional than when this all started and am able to work full time along with engaging on other life activities such as clubs and church. When I crash I crash then get back on the horse, just try to ride more slowly and on less rocky roads.

[quietdynamics]

I can attest that it is possible to heal your gut. I was very ill with gut issues for several years, including emergency room visits for norovirus and some undetermined cause for stomach issues then found I had an H Pylori infection.

Having IBS which was incidentally managed with neuro meds.. Gastro issues are something that lurks in my mind. I do carry Dicyclomine with me.

It is great that the H Pylori was treated. A breath test can detect it.
Dr. Timothy Cragin Wang, is an expert on H. pylori and its role in gastric cancer.
"Since the 1860s, when an influential anatomist traced
cancers back to epithelial cells, scientists had thought gastric cancer arose
from the epithelial cells that line the stomach. By the 1990s, scientists knew
that H. pylori instigated most tumors but did not understand how.

Dr. Wang thought that bone marrow-derived stem cells recruited to the
site of H. pylori infection to clear the cells could play a role. But what
he found in a mouse model of gastric cancer was completely unexpected:
The bone marrow cells turned into tumors."

"Dr. Wang says. "Many of the 'black box' aspects of cancer become
easier to explain"

* I like this term.."black boxes", all the unknowns.
http://www.cumc.columbia.edu/psjournal/sites/cumc.columbia.edu.psjournal/files/columbia_medicine_spring_2012.pdf   (page 6)   He uses a gardening metaphore but, for some reason I cannot copy and paste for you.. it is in the right column.

Of interest?
PRIMARY SJöGREN'S SYNDROME WITH PROTEIN-LOSING GASTROENTEROPATHY: REPORT OF TWO CASES
"Excessive intestinal protein loss might be due to increased permeability of the mucosa under the effects of inflammatory prostaglandins and cytokines in Sjögren's syndrome."
file:///C:/Users/barbara/Downloads/9c9605198d17be692f.pdf

Dx'd with IBS for lack of a better understanding after test results - normal, I often wonder if as in the example mentioned in the last study, despite best efforts, we actually suffer malnutrition via, mal-absorption?
Does SJS affect the intestinal glands?  I would think so. http://en.wikipedia.org/wiki/Intestinal_gland

[machenza]

machenza... Have you tried Vistaril or Atarax for the IC??

Keep us posted on what you do for the gut!

I have tried Atarax and worked great at 50 mg for the night, however I am so dry now even with Salagen so I am affraid to even try again. I will look up the Vistaril.

Thanks,
Nellie

[lighthouse33]

I was diagnosed with Small Intestine Bacterial Overgrowth via colonoscopy in January.  I was put on the diet in this book.  Gastro said to try it for 3 to 4 months to see if I can clear it up. 

SIBO can also be diagnosed by taking the blow test for it. 

I just ordered the book yesterday.

Breaking the Vicious Cycle: Intestinal Health Through Diet

by Elaine Gloria Gottschall

Breaking the Vicious Cycle was written by Elaine Gottschall, biochemist and cell biologist. It provides an alternative way to help combat digestive disorders using dietary changes; and also a practical book that addresses the problems of intestinal conditions such as: Crohn's Disease, Ulcerative Colitis, Diverticulitis, Celiac Disease as well as less severe complaints like: indigestion, "nervous stomach", chronic diarrhea & spastic colon.

[lighthouse33]

This has to be my favorite book of the year.  I may even read it again.

The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life

by Donna Jackson Nakazawa

One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That?s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. As a science journalist, she was curious to know what mind-body strategies might help her. As a wife and mother she was determined to get her life back.

Over the course of one year, Nakazawa researches and tests a variety of therapies including meditation, yoga, and acupuncture to find out what works. But the discovery of a little-known branch of research into Adverse Childhood Experiences causes her to have an epiphany about her illness that not only stuns her?it turns her life around.

Perfect for readers of Gretchen Rubin's The Happiness Project, Nakazawa shares her unexpected discoveries, amazing improvements, and shows readers how they too can find their own last best cure.

[jazzlover]

Machenza... Vistaril is hydroxyzine pamoate

[machenza]

Machenza... Vistaril is hydroxyzine pamoate

Thanks