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.
Congratulations! I hope your positive health continues!
I'm jealous
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...
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. ;)
Quote from: Carebear on April 30, 2011, 01:17:39 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.
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
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
So glad to hear that you are feeling much better...hope it continues for you! :)
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!!!!
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.
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 :)
It is nice to see another young male here btw. Are you confirmed or suspected?
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.
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
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.
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
Quote from: season on April 30, 2011, 10:25:03 PM
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.
Quote from: balor123 on April 30, 2011, 09:30:55 PM
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
Quote from: Budgie on May 01, 2011, 01:04:18 AM
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.
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.
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.
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
Great thread!
Very interesting.
Thanks for all the info.
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. :D
Here are my Enterolab results back from 2007 for those interested.
Quote
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.
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
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!
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).
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!
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?
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!
Why is this posting shown as New when it's from 2011?
It shows up as new because someone went through the older threads and found this one and replied. It then shows up as a new thread because of the current date of the last post.
Sometimes people will also do a search on a certain subject and end up replying to an older thread. Irish
Thanks for sharing your good news! I hope it continues for you!
I think it would be very interesting if Woolygimp could write if this improvement is still going on.
An acquaintance of mine had ankylosing spondylitis when he was young, but he has been living since the last twenty years or more without any symptoms and he can work as a healthy man. Sjogren is not ankylosing spondylitis, but both are believed to be autoimmune.
Regarding the diet, AIP also calls for removing all grains from the diet.
I do Paleo without gluten, dairy, legumes, nightshades and sugar and while I flare if I go off it
I still suffer from symptoms on it.
I'm considering trying to go completely grain-free as suggested in this post,
though it would be difficult.
Does anyone know if grain-free means no oatmeal and no quinoa?
I love reading posts like this especially after just waking up like today, no matter how old. It helps bring balance back to a sometimes terrible disease. It shows there is hope for all of us no matter how minute the chance. I'd like to believe our body is locked and we just have to find the key. Easier said than done but not impossible. My head is now set to have a good day.
Good day to all of you.
GgcJap
I am a "hard sell" when it comes to the "miracle cure". There is always the chance that a remission can occur at any given time no matter what what our treatment, diet or medications.
So many times people get excited over feeling well and then get so discouraged when the symptoms come back. Then there is always the chance that there can be an incorrect diagnosis in the past. It really is a crap shoot. The truth is so many people literally wake up one morning with symptoms and the same thing could happen in reverse without us doing a thing. I would like to know how he is getting along also. Irish
Great news Woolygimp!
Hope your improved health continues.
To hear more about your diet regime would be interesting & helpful.
An improved diet eliminating processed junk food has to help any illness or any individual.
The trouble is our foods aren't up to standard so I doubt diet alone is the answer.
We need to grow our own foods properly I think.
Proper food supplements seem needed along with improved diet.
Then you have all the chemicals etc one can't entirely avoid.
I've try to eat very healthy & consume mostly glyconutritional supplements, life savers for me.
Do our best is all we can do.
Just my opinion, others my not agree.
Lotus1
I am pleased that you are feel well. I was a bit bothered by this statement: "I'm trying to be helpful. If you're happy the way you are then by all means continue."
which could be interpreted to sound as though we are not all trying multiple interventions. I've tried it all in terms of food elimination, had extensive food allergy testing, and even saw a holistic practitioner and had muscle testing. I stopped eating corn, wheat, soy, and walnuts (even she allowed some grains) and took synthetic hormones for a while (which the holistic practitioner sold me me along with many other expensive supplements). FYI the hormone eventually made me quite aggressive, when I mentioned it to the practitioner she then said I didn't need them anymore, within six months I was sick again (despite keeping up the diet).
I feel much better when not eating any type of grain, but if I am living a typically active life though I then also feel starved. Every doctor I have ever had, and I've had many and several very good ones, has said eat a balanced diet. One rheumatologist said this is a systemic disease that is attacking the body where bone and skin meet and that no diet will change that.
I have great days and sometimes even weeks. I have come to learn there are many potential factors, including the weather (I feel great when it's sunny and about 70 every day and a bit cool at night). Staying active also helps as well.
Just sharing my story as you shared yours.
Please take note: Woolygimp is no longer a member of this community, by his or her own choice. Possibly with improving health, there was no longer a need of support and the account became inactive and was deleted.
@Sharon; oats and quinoa are grains and would therefore be included.
This was a post from 2011, search woolygimp and you'll find threads of his as late as 2014.
Thanks Linda, as far as I know quinoa is actually a seed not a grain.
From all I've read quinoa and oatmeal actually possess anti-inflammatory properties
whether grains or not.
You can tell if he is still an active member by going through the alphabetical list of names. I have not checked on him but know that I had not seen him recently. Irish
I just checked three lists and he or she is not listed. Not listed under the member section. I would imagine he hasn't posted since 2014 and so his membership hasn't been renewed. Membership is renewed when we post and are not reconized as a member. Have to do the signing up then. Doesn't take 2 seconds, but that is what keeps us current.
Looking at the Woolygimp's other posts after 2011, he ended up still dealing with symptoms and taking various medications as late as his 2014 posts, which appear to be his last posts on this forum.
Curiosity got the best of me, and searching on the web for other woolygimps out there leads me to believe that the young man passed away this past November (2016).
Pete0211
What page/pages led you to this conclusion?
So sad.
GgcJap