Author Topic: My sjogren's disappeared completely last week.  (Read 5912 times)

Woolygimp

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My sjogren's disappeared completely last week.
« on: April 28, 2011, 07:17:36 PM »
I'm a 24 year old male with both Celiac Disease and Sjogren's.   I had been taking plaquenil for roughly a year as of January, of this year, but I discontinued taking it some months ago.  Instead I got helminths in December, and restarted testosterone replacement therapy a few weeks ago, (blood levels of <150mg/dl for a 24 year old guy), and stopped eating ALL grains/Dairy as of a couple weeks ago.  [I had been gluten free for 2-3 years and while it did help, it never really improved the Sjogren's much]

Last week, every single symptom I had disappeared.  I felt better than I've ever felt.  Normally, it's difficult for me to even leave my house and I have adapted to the sedentary lifestyle but I wanted to do everything... run, swim, and even jump (just to jump!).  My brain function went from everything appearing as a slide show, with my memory so bad that I couldn't remember names of people that I've known for years, and had trouble even finding the words with which to speak... to feeling intelligent and snappy again.  My mental function alone made me feel like a completely different person.

The physical changes were just as drastic, and in over 7 years I finally felt what I felt like before I got sick when I was 18.  I felt great; literally glad to be alive.  

I'm not sure what did it or if it was a combination of all three.  But, at least for some of us, this gives me hope that there's a possibility for us to cure ourselves instead of waiting 20 years for the medical community to roll out a solution (we'll be dead by then).  I know Sjogren's has a ton of links with testosterone and that's why it is clinically present at a 9:1 ratio of women to men, so that could be it... or it could be the helminths kicking in, or the diet ... since Celiac & Sjogren's also have a relation.

Sjogren's isn't known for spontaneous remission and I've had the disease for over seven years with each year being worse than the last.  A gluten free diet alone only marginally helped, and really only solved my gastroinestinal issues.  So it certainly seems that I'm finally on the right track...
...Don't give up.  Keep trying things.
« Last Edit: April 28, 2011, 07:24:42 PM by Woolygimp »

Joe S.

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Re: My sjogren's disappeared completely last week.
« Reply #1 on: April 28, 2011, 08:27:55 PM »
Congratulations! I hope your positive health continues!
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dainbramage

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Re: My sjogren's disappeared completely last week.
« Reply #2 on: April 28, 2011, 08:29:51 PM »
I'm jealous
44 with SJS, IBSc, migraines, brain fog and fibro. Dry skin, burning tongue, dry mouth, swollen glands, dry female area, numb toes, tingling fingers. On plaquenil, pilocarpine, cymbalta, zyrtec, provigil, vit D, mag, Amitiza for IBS, treximet for migraines.
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Woolygimp

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Re: My sjogren's disappeared completely last week.
« Reply #3 on: April 30, 2011, 02:13:29 PM »
I'm surprised you don't see more about diets on this site, considering every other autoimmune community on the web is laden with people trying everything that makes sense in order to see what works/doesn't work for them.  

My sjogren's appeared after extensive damage from Celiac, and I'm fairly sure it resulted from food particles getting inside my blood stream from a damaged lining.   I say this because when I eat certain foods (almost all allergens) such as nuts, avacados, eggs, or fish... especially fish, I start getting massive muscle aches and fatigue that is unbearable.   It's obvious that it triggers a reaction when I eat the foods.

Often going gluten free, I'd use dairy/avacados/fish/nuts as my crutch and eat even more of those foods, causing me to feel even worse without realizing it.  There's no question that I'm allergic to all sorts of things now and this is the only way it's working for me...

Anyway, I'm sure several of you have Celiac disease.  There's a definitive connection between celiac and sjogrens, and I'm sure those afflicted by celiac disease would drastically benefit from a diet.  Maybe even complete remission is possible (tons of anecdotal reports all over) if you're stringent enough.  This isn't quackery either, celiac disease exists... and more than a few of us have it.  That simple protein causes a cascade of autoimmunity.

I was sitting around asking myself, "what I would do to feel better?" and some of the things I told myself surprised me.  I would be willing to do almost anything... That was all the motivation I needed.

So I've been eating chicken/beef/vegetables almost exclusively for a couple weeks now, feeling great.  Then  I ate an avacado yesterday, really... I wanted to see what would happen, and I went from being super energetic to literally lying on my bed in a very sedated state to where it was very hard for me to even lift my arm.  Every muscle/joint ached incredibly bad and I just laid there for 4+ hours.   My sjogren's symptoms came back and flared up for the rest of the day, continuing somewhat into today.    All that within a couple hours of eating the food, it really is incredible.

Another thing, is that I've always had a voracious appetite.  I've never weighed over 180lbs but I'd eat massive amounts of food, never really being full.  Now that I've cut out of all grains, I've noticed I can take a few bites out of some chicken or beef and be full.   Just a few bites...
« Last Edit: April 30, 2011, 02:18:43 PM by Woolygimp »

Carebear

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Re: My sjogren's disappeared completely last week.
« Reply #4 on: April 30, 2011, 03:17:39 PM »
Dear Woolygimp,

I'm happy that you are feeling well.  I don't want to sound negative, but because you are feeling better does not mean your Sjogren's has disappeared for good.

As someone with Celiac Disease who has eaten gluten-free for over a decade, I don't agree with your theory about the cause of Sjogren's.  I believe the real connection they share is that they are both autoimmune diseases.  We often see people on this board with multiple autoimmune diseases because they tend to travel in packs.

This subject has been raised a lot on this board.  You can conduct a search by subject if you wish to read other comments.

Autoimmune diseases reach across every race, nationality, religion, and gender on this planet, so how can it be only diet related?  Just "food" for thought. ;)
« Last Edit: April 30, 2011, 03:29:24 PM by Carebear »
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Seizures.

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Woolygimp

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Re: My sjogren's disappeared completely last week.
« Reply #5 on: April 30, 2011, 03:33:42 PM »

The question I ponder is "Why do autoimmune diseases reach across every race, nationality, religion, and gender on this planet if it is only diet related?"

Because there isn't a society on this planet that doesn't eat some derivative of corn, wheat, or rice?  

And that's a very base question and not indicative at all of reality.  Sure, autoimmune diseases affect every society,  but many countries have much less incidence of autoimmune diseases, with the United States having levels approaching an epidemic.  Certain diseases affect genders differently, and as you "should" know Sjogrens is 9x more likely to affect women than men.   I think the hygiene hypothesis makes sense, but that's not say what happens once triggers are introduced into your blood stream via the small intestines.  

I also did not show much improvement on a gluten free diet alone.  Improvement only happened after I got rid of the other grains (which may be in a problem in up to 45% of the people with Celiac disease) and casein, which is also a problem.  

In over 7 years of having this disease I have not had this much of an improvement.   Regardless as to what you've been told by your physician, there are people out there who have had remission of their Sjogrens whether by diet or treatments like LDN.  I've been on prednisone, plaquenil, corticosteroids, and never had this much relief.  I'm trying to be helpful.  If you're happy the way you are then by all means continue.  

For those who want to give it one more shot... Why not try a paleo/grainfree/SCD/gfcf diet for a month and see how it goes.  What do you have to lose?   I want to reiterate that my Sjogrens only marginally improved after just a GF diet and I had to go the extra mile.    There are a lot of people with signs/symptoms/or a diagnosis of sjogrens on celiac.com but I find that community a lot less close minded, and a lot have shown improvement on exactly what I'm talking about [where do you think i got the idea]?  These forums have to be one of the more pessimistic communities out there and that isn't exactly healthy.

And it's not like I'm trying to hawk a book or sell a supplement, I'm just explaining what seems to work for me.
« Last Edit: April 30, 2011, 03:45:14 PM by Woolygimp »

eyeamdry

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Re: My sjogren's disappeared completely last week.
« Reply #6 on: April 30, 2011, 04:06:38 PM »
wOOLYGIMP, YOU ARE A SWEETIE FOR POSTING THIS.  I am not into natural cures, give me a pill, but who knows - I might try this one day.
Quite a few people have gotten better on gluten-free or similar diets.  Since you are not "hawking a book" many of us thank you for this information.
Continued good health to you.  Lucy
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stephL

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Re: My sjogren's disappeared completely last week.
« Reply #7 on: April 30, 2011, 04:12:43 PM »
Woolygimp, I'm glad you're feeling better and thanks for mentioning Celiac!  I have to share about this! :D  Since there is a link between Celiac and Sjogren's, I hope this will help someone! 

It took 20 years for my docs to diagnose me with Celiac Disease! :o  The problem is that false negatives in Celiac testing are common. I suspect that if I had had an opportunity to control my Celiac Disease earlier in life, I may not have developed Sjogren's. At any rate, it can't be good for us if we are trying to control one auto-immune disease and also have others raging undiagnosed and untreated. That's my theory and I'm sticking to it!  :D

 

"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

lynnmarie219

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Re: My sjogren's disappeared completely last week.
« Reply #8 on: April 30, 2011, 04:37:47 PM »
So glad to hear that you are feeling much better...hope it continues for you! :)
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susan

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Re: My sjogren's disappeared completely last week.
« Reply #9 on: April 30, 2011, 05:15:34 PM »
This is fascinating information, particularly about the helminths.
Hate to sound ignorant, but where or how does one obtain them?

I am always excited to hear about someone feeling better!!!!

Bella

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Re: My sjogren's disappeared completely last week.
« Reply #10 on: April 30, 2011, 06:24:09 PM »
Hey Woolygimp,

I am thrilled with what's happening with you, and wouldn't mind trying your diet.

I am female, but started a low dose testosterone/estrogen combo in my mid forties which made me feel TONS better within 2 weeks of taking it -- better than I had in YEARS.  I wasn't even aware of how "physically" depressed I'd been, until I started on the hormones.  I stayed on them not only because I felt so much better, but because I still had a regular mestrual cycle which just kept on -- it was like the hormones were some kind of "base level" that I needed or something.  Unfortunately, I didn't have any blood testing prior to this for objective data.

Anyway -- I've stayed on this combo (am post menopausal now), and was hit with Sjogrens-like symptoms (dry everywhere in all the usual places) about 6 months ago despite being on the hormones.  In theory, I've got a baseline of testosterone, estrogen and progesterone going on, so I should be OK in that department.  But I'm thinking of trying to get a doc to test for levels and then . . . what?  Experiment with different levels? Keep the testosterone and get rid of the est/prog?   Well, good luck to me trying to get a medical professional interested in that.  Anyway, I may still try.

In regards to diet -- I am doing several diet challenges, and am thinking of grain/dairy free as the next one.  I'm sure that diet would be great for me because I'm Type 2 diabetic as well.  Originally, when I was hit with my first "flare" up about 6 months ago, I was eating a ketogenic diet -- almost grain free -- for about 3 weeks when the "flare" hit.  So it certainly didn't stop my symptoms from developing.  But I'm willing to try it again for a month to see if it would help.  Currently, I'm re-trying a gluten free diet and beef-free, because I'm wondering if the beef is my problem.  I was a vegetarian who didn't eat meat since 1992 until my ketogenic diet, when my symptoms hit big time.

If you could, could you mention what foods you're eating specifically -- raw, steamed veggies? etc?  I was trying 3 oz meat, with 3 servings of 3 oz veggies and 1-2 tabl oil per meal, all organic and fresh. It was brutal -- I really missed my carbs, and I simply don't like meat!  I'm also trying to go BPA free (which means reducing my load by getting rid of plastic).

Lastly, could you please explain the helminths?  Does that mean you gave yourself a tapeworm???  Why?

Thanks, and congrats on your remission or cure, whichever the case may be -- sounds like you deserve it.

balor123

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Re: My sjogren's disappeared completely last week.
« Reply #11 on: April 30, 2011, 11:30:00 PM »
I don't have celiac disease but due to CRPhs and IgA-ttg test results my PCP and Rheumy think I should be gluten free (my GI thinks otherwise). Been on it for about 3mo now so could take some time to see if it is helping. Removing any item from your diet should take months to see improvement since antibodies don't disappear quickly and damage needs to be repaired. I would say a timeframe of 1-2years is safe. However, as I'm borderline desparate at times I'm willing to try anything :)

balor123

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Re: My sjogren's disappeared completely last week.
« Reply #12 on: April 30, 2011, 11:30:55 PM »
It is nice to see another young male here btw. Are you confirmed or suspected?

season

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Re: My sjogren's disappeared completely last week.
« Reply #13 on: May 01, 2011, 12:25:03 AM »
Hi Woolygimp. I'm so happy that you are finding something that is helping you.

Would you mind posting exactly what you eat for breakfast, lunch, dinner and all other snacks in one given day. Also, if you don't mind, do you drink a lot of water? I'm sure that many on the board would love this info.

Thanks.
female 58

primary Sjogrens, hypertension, aching joints, numbness and tingling in legs, dry eyes, nose, mouth; trigemenal neuralgia; irregular heartbeat, gastritis, diverticulosis, hi-hernia

meds: baby asprin, lorazepam as needed,  fish oil, Diovan for BP, Plaquenil, Salagen, Prevecid,

Meld256

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Re: My sjogren's disappeared completely last week.
« Reply #14 on: May 01, 2011, 02:07:41 AM »
Woolygimp,

Thank you for posting. This is fantastic news and I am so excited for you! ;) It's always good to hear of a success story.

I think whatever works for people is what they should be doing; you have found what works for you and that's awesome. We all need to be open-minded about trying new things. That said, right now I'm trying a few new treatments, so think I'll give that a go before anything else.
Thanks for sharing and I wish you continued good days!
Melinda
57, female, Sjogren's dx 09/2010, Fibromyalgia and CFS dx 04/2009, meds: Savella, trazodone, Relafen, Plaquenil, Restasis, FreshKote eye drops, Bepreve drops, Optive Refresh, Biotene OTC products, retired/SS 12/2010

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