My sjogren's disappeared completely last week.

[Budgie]

Brilliant news.

I too have sjogrens and celiac disease.  Where did you get the helminths?  I'd love to give them a go.

Are you eating wheat now?  I so miss bread!

All the very best.

[gurs]

The hormone connection I believe is a biggie....whatever your doing...dont stop. I hope your good health continues and pray for the rest of us.
I agree about the diet as well, though I cant seem to stay on one for long...


Gursie

[Woolygimp]

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.

Today I woke up and ate a few filets of chicken with cayenne pepper, onions, tomatoes, and olive oil.  I snack on tomatoes with balsamic vinegar & olive oil, salt and pepper too.  I cooked a few cuts of beef for dinner.  Yesterday I ate some ribs.  

I have all sorts of other fruits, vegetables, and meat in my fridge that I'd love to get around to trying but right now I'm really restricting myself after identifying avacado as a problem.  I ate avacado yesterday morning and I didn't leave my house all day, I literally almost passed out and had a massive flare.   Tonight, almost 44 hours later or so I seem to be feeling really good again... salivary function is back all the way and my eyes are tearing up again. I've tried the SCD diet but I ate legumes/yogurt and didn't notice much of a benefit because I have problems with both.  There's SO many foods that cause me problems that I ate for years, because I didn't think there was any way I would react to them.  But I was.

I do have one question to ask.  Have you guys ever noticed an improvement in symptoms when you go long periods without eating?  That's something I always noticed, my symptoms would die down the longer I went without eating and I always attributed to me weakening my immune system by restricting calories , but I think that was an incorrect assumption.

It is nice to see another young male here btw. Are you confirmed or suspected?

dxed with both sjogrens and celiac


Here's someone else on another community with a similar experience, some of you might be interested in some of the information in the thread.  I read her post back, early of last year, and is part of the reason I wanted to completely restrict my diet - especially since I never fully improved on the SCD.

http://www.city-data.com/forum/diet-weight-loss/357803-diet-sjogrens-syndrome.html

[Woolygimp]

Brilliant news.

I too have sjogrens and celiac disease.  Where did you get the helminths?  I'd love to give them a go.

Are you eating wheat now?  I so miss bread!

All the very best.

Wheat? Absolutely not. 

I got the Helminth's from Garin @ Wormtherapy.com.   I can't say enough good things about the guy, pleasure to deal with and pretty compassionate.  I do have to say that right now I'm attributing most of what I'm feeling to my diet because of what seems to be an almost immediate and direct correlation with what I eat.  The worms could be helping but I really don't know enough to say either way. 

There are quite a few people at the Yahoo message group with Sjogrens that say they've had great success with them.  Cal comes to mind... but personally I can't say that they're benefiting me.  I also can't say they aren't.   I don't know either way, I just know the key seems to be diet at this point.

[Dry1000]

Hey Woolygimp

              It's good to hear about your good health, I'm a 31yr old male with sjogrens and I have testosterone issues as well, which I'm currently getting treatment for. Have you had your FSH checked?, I know mine is sky high and the endo does not know what to do for it.

[Bella]

Hi Woolygimp,

Yes, I've noticed my symptoms subside if I don't eat.  If I remember correctly, I think I read somewhere that this is a well known phenomenon in RA also.

In my case, my primary symptom is "facial neuropathy" -- weird tingling/numbness/"tightness" traveling around my cheeks, eyes, upper lip (along the upper branches of the trigeminal nerve).  These symptoms are correlated with, if not causative, of my severe dry eyes/mouth/sinuses.  So I'm trying to work on eliminating the neuropathy, in the hope the dryness will improve.

Symptoms are least in the AM (I haven't eaten all night), and progress till they're worse in the PM.  So, that's when I wondered if it was food related.  Weird thing is, I sometimes feel I have the symptoms when I'm making the meal, BEFORE I eat -- almost like a pavlovian response.

I also still haven't nailed anything down definitively.  Example:  one time I drank one cup OJ after not having had it in months -- within an hour, severe symptoms, including "brain fog".  Took several days to subside.  Well, I try to not make any conclusions on an N=1, so I tried it again couple months later -- no response.

It is very hard to remain consistent, change one thing at a time.  Overall, I agree that a no grain, raw, organic diet is best and can only be helpful -- I've heard it described as the "500 year rule" -- if it hasn't been eaten by humans in the past 500 years, don't eat it today.

[gurs]

Woolygimp,

Funny you mentioned about the SS and not eating (feeling better) I just was thinking about that....I notice that alot? I think our bodies are reacting to the different
foods..we are prob allergic to most of them? Uhmmmm very interesting? I guess I need to try and fast for a day and see if that helps. I think with SS our bodies
dont metabolize things right either.

I also have no testosterone at all......I use a small amount of the bio-testosterone cream and that is all I can handle...I start flipping out.
I also heard that DHEA should help a bit with my low hormones, estrogen and testosterone..I was on it before and felt alot better.

thanks for the info everyone.

Gursie

[sis]

Great thread!

Very interesting.

Thanks for all the info.

[Woolygimp]

I ate two Hershey's [milk chocolate] bars and a slice of cheese last night, a decision I definitely regret, and last night I slept 18 hours (literally) and feel drugged and aloof today.  Woke up with dry eyes and mouth has been dry all day.  It's almost amazing.  

Giving up dairy is one of the hardest things I've ever tried to do.  Giving up grains was a walk in the park by comparison.  I love everything with dairy, but I especially LOVE cheese.

There's an exert in the book Paleo Solution by Robb Wolff where he talks about elimination diets and when it comes to getting rid of certain foods like dairy, he says to throw everything away that you can't eat because when the time comes, and you're hungry... you're not strong enough to resist and eventually you'll justify eating those foods.  "But it's only one piece of chocolate, it can't hurt me."
Those chocolate bars were sitting in my cupboard for weeks without me touching them... but it was only a matter of time.

Here are my Enterolab results back from 2007 for those interested.

Date: 6/6/2007

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA    21 Units   (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA    11 Units   (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score    Less than 300 Units   (Normal Range is less than 300 Units)

Fecal Anti-casein (cow?s milk) IgA    24 Units   (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1    0302  

HLA-DQB1 Molecular analysis, Allele 2    06xx  

Serologic equivalent: HLA-DQ   3,1  (Subtype 8,6)

Interpretation of Fecal Anti-gliadin IgA:  Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA:  You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score:  Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow?s milk) IgA:  Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic ?sensitivity? to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing:  HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.

My casein antibodies were higher than those of gluten  and I'm a diagnosed/confirmed Celiac.

[gurs]

anyone tried NAET therapy? I heard several great things about this, especially for those with autoimmune. I found a doc in my area that does this..I guess
its supposed to eliminate all your allergens?

Gursie

[jade]

congrats!!!!!!  omg what a great thing!  someone said they are jealous .. well ME TOO!!

I AM TOTALLY a believer in natural remedies.  i just have to find mine.  i will tell you this you guys, i have heard time and time again that grain free diets are really helpfull for inflamation issues (which is what sjs is mostly as far as what's causing us pain), and i finally broke down and tried it a full week last week.  my neck/glands around there have been in constant pain for at least a month.  it's usually one thing or another sometimes everything like you guys know.. this time it was just my neck and glands around there..   they usually come and go but this time they just woudln't go away and pain killers just toned it down but never got completly rid of the pain.  well by the 3rd day or so of grain free .. i had realised my neck wasn't hurting.  so i'm like this is good.. and kept paying attention.. becasue now i have learned to live with the pain and ignore it so much i have to actually pay attention to see if i have pain (in not so bad days of course .. well, nothing.. all week after that it was like pain was absolutely GONE.  so yesterday, i cheated on purpose.  i went ahead and ate some bread and other things with grain.  it took all of 3-4 hours, my neck again and my heart started racing, i started getting hot flashes even.. it was soooooooo obvious.  that's the only thing i did different.  so grain free is the way i am going. 

i SO agree.  no matter what they tell you, do not be discouraged and keep looking for your relief.  i'm not saying that this is it for me and i'm ok.. i just now started, i don't know how it all will work in the coming days, but i am hopeful and going to try different things to make myslef better and better. 

thanks to people like you that post their experiences, is how i go the GF diet idea. 


good luck eveyrone!

[Nathan]

It's great to hear you're getting some relief from your symptoms, but I wouldn't jump to any major conclusions. Correlation does not imply causation.
I think one of the main reasons why diet isn't discussed more is simply because, unless you have coeliac's, or an allergy (which stimulates the immune system), I can't really see a huge link between diet and symptomology. I am _HIGHLY_ suspect of the enormous amounts of supposed treatments for diseases that rely on diet alone, a great example is Atkins, which is a dangerous and unhealthy diet. I believe that eliminating any one category of food is potentially dangerous, especially if there is no proven benefit. To each his own though, if you feel better not eating chocolate (for example), then it's probably a good idea to stay away from it. Do your research, and do experiments. Be healthy with what you eat!

My money is absolutely on the helminths (and HRT). Helminths being a highly controversial (and completely unapproved treatment in the US).
Even if helminth therapy works, and does modulate the immune system and reduce symptoms, I can't in my right mind accept the fact that I would be intentionally infecting myself with parasitic worms that would be living inside of me, and feeding off of me. I would be much more inclined to follow a more standard treatment with years of research and millions of patients backing them.

And though it is possible to feel like symptoms are gone (I've been there), it is impossible for Sjogren's to go into complete remission. The only cure, the only way to cause permanent remission, is by getting a Bone Marrow Transplant (in which the entire immune system is erradicated).

[Sooki]

I'm so glad you're feeling better, wooly.  I also realized that I would do anything to feel better and have experimented with lots of remedies, including diet (gluten, dairy, soy, chocolate, caffeine, most sugars, a few others).  Speaking of testosterone, I recently tried taking DHEA (an androgen) for a few days. Some studies have shown it to help lupus people get more energy.  I took 50 mg pills because that's what the store had.  Within a day, I had more concentration and more energy.  I felt like exercising strenuously.  Totally different from my winter slump.  I stopped after 4-5 days for several reasons:  I started gaining non-water weight right away (muscle mass?), my rheumy cautioned about possible heart side effects, and the most important - I noticed some peach fuzz growing.  I see online that there are some 5 mg tablets.  I'm keeping this in mind for next winter in case I go downhill again.  I sure did feel peppy!

[pjmccoy1]

Wonderful news Woolygimp.  I hope all is still well with you.  Do you still consider you Sjogrens in remission?  Update please.  Also, did you experience restless legs syndrome, Raynauds and small fiber neuropathy with your Sjogrens?  Are you still doing the helminthic therapy, assuming you're using hookworms?

[Deb 27]

Very happy to hear about your result!!! I hope it lasts and lasts. I agree that food intolerances are a HUGE part of this disease for some of us, maybe not all. I am antibody negative. I have noticed a big difference when I cut out gluten even though I tested negative for celiac. I also had colitis  for many years. Finally after surgery, I got some relief, but then, I got other auto immune diseases.
I got tested for food intolerances: wheat, dairy, yeast, soy and eggs had the highest score but I had 21 different foods that I reacted to! Ouch! One of them was chocolate! I had an awful time with fatigue and pain. At times I considered applying for disability but couldn't go without my paycheck long enough to do that.

I watched a great series of videos from Functional Medicine Drs. and there were a lot of stories about people going into remission by going gluten and dairy free. Yes, why not give it a try? Some of the stories were from Drs who had gotten sick with MS, RA etc.....

I've had some times that I would go into remission and had no clue why but it didn't last long. I even wondered if I had something else or was going to be disease free, but unfortunately, it came back. Sometimes I am not completely compliant with the diet piece. This gives me some inspiration and motivation to be more compliant with the diet piece. For now, I am better off than I was a few years ago being gluten free. I can say that for sure.
Keep us posted with your progress!