[SnooZQ]

While I've heard of people who lose their joint pain or fibro on GFD, my experience was the opposite. This is a long story, but it has a happy ending.

When I started eating GF over 2.5 yrs. ago, I was really delighted to "lose" my life-long IBS. No more days wasted, w/incapacitating spasms.

But within a month or two of starting GFD, I got an arthritis flare. Since I have a rag-bag of diagnoses in that dept. since childhood, I didn't give it much thought ... until it didn't go away. But I'd been under a lot of stress (teenagers) & my autoimmune stuff does tend to flare under stress. However, this soon turned into the worst flare I'd ever experienced. Needed to use a handicapped scooter for shopping at times.

Then about 3 mos. into GFD I did something stupid & injured my shoulders. FWIW, that "hundredweight" deal on shipping by FedEx, it doesn't all have to be in one box. SMART people figure out the deal is for multiple boxes adding up to 100 lbs, all going to the same address on the same date ...

After many months the shoulders still weren't healing, the nasty arthritis was continuing, and I was starting to experience diffuse soft tissue pain throughout my body. Doc found the tender points, so fibromyalgia was dxd. Eventually I convinced doc to give me a trial of thyroid hormone, based on low free thyroid hormone levels. Synthroid was helpful, to some extent. Better with it than without it, but things still weren't great.

In '06 I had episodes of pain, stiffness, & swelling severe enough to keep me homebound, unable to manage stairs. Needing a walker at times, and a cane quite often. I felt ... 82 years old, not 52. In the worst spell, activities like dressing, getting out of bed, standing up from sitting -- were major challenges. It wasn't that bad most of the time, but my activity level had really fallen, and I was learning it's difficult to socialize when you can't make serious plans.

I'd found a few triggers for my flares, chemicals & foods that tend to suppress thyroid function. That was a small improvement -- I thought. But by Dec./06 my DH & I had decided that I should try to find a rheumatologist I could *tolerate* -- a depressing thought. Do such creatures exist?

Then I stumbled upon a You Tube clip where, I think it was GF Girl was holding up a huge baker spud, & saying "THESE are gluten-free. I eat a lot of them." And I got to thinking ... yah, that sure is something that's changed ... I'm eating about 3 x more potato than I did pre-GF, if you include potato starch in baked goods.

Google pulled up Norman Childers & his nightshade theory. www.noarthritis.com. Apparently it's been know by vets for a looong time that grazing animals who survive nightshade contam in feed or field, usually end up with severe arthritis. Directly attributable to the nightshades. Childers, being a horticulturalist working w/vets on this problem, started to connect the dots in a very personal way when he himself was dxd w/arthritis, 45 yrs. ago. He's now 96 years old, still running his website & small business, selling books on NFD. I've rec'd a number of emails from him, and also a hand-written letter. Makes ya wonder ... does he just have great genes, or is that decades of NF diet at work?

Nightshade-free diet means no potato, tomato, eggplant, tobacco (+ avoid 2nd hand smoke), no peppers of the spicy or bell type, including dried spices like chili powder, cayenne, paprika. Also,nonorganic soy must be avoided since currently 80% of the soy in the USA is GMO, some w/SNPs from petunia (a nightshade).

HoHo, those spicy ethnic dishes we'd gravitated to, making GFD interesting for our teens? Loaded with peppers. No more creamy dairy sauces? Sub tomato sauce dishes. And how 'bout that yummy Greek roasted eggplant spread ... I could see that there were a number of things, besides potato, that had undergone sig. change when I went GF.

In a last ditch attempt to avoid the Rheumie & his poisons, I spent nearly 3 weeks "baselining," -- eating my regular diet, while morning & eve "scoring" every red, swollen, or painful joint/tendon/muscle group on a 0 - 5 scale.

After I had a baseline & range of daily values, I began eating NF. Spices in commercial sauces, salad dressings, & sausages were the main pitfall. But I was able to pretty easily adapt.

Within 72 hrs. of strict avoidance of nightshades, the swelling in my hands started to go down. After a month NF, the skin on my hands & fingers has deep, baggy wrinkles. Kinda like a person who loses 50 lbs too fast might get under their chin. I'm once again able to wear my wedding ring.

I've made great strides in pain reduction & am slowly increasing my activity level, hoping to get back some of the muscle I'd lost with inactivity. My fibro muscle & tendon pain is not gone, but it is much less than what it was. Shoulders, hips & knees have improved, but not as dramatically yet as fingers & wrists.

I know I have "factors" beyond nightshade sensitivity. Barometric pressure dips, exposure to "bugs," stress (the kids are still at it), and "overdoing," cause flaring, as in past. But mini-flares. Both my day-to-day average pain, as well as the flares, have been taken down several notches.

In 20 days of baseline, my "best" day was 11 finger joints swollen & painful. Last week, my worst day was 2 finger joints, touch of swelling, not painful. The numeric scoring system also demonstrates a significant effect from the NFD. It may sound corny, but I'm thrilled with my progress: * able to use can opener & garlic press * no more pain using cptr mouse & typing * able to go up & down stairs to basement 3x/day *able to scrub entire back (shoulder ROM) * able to experience good feelings from my muscles when I'm using them. Each of these little things represents another piece of my life -- back!

If you ever hear someone complain about arthritis or fibro being worse on GFD, please alert them to the possibility of nightshade sensitivity.

[DogtorJ]

Great info, SnooZQ (great name, too )

Are you still doing dairy products? Have you ever done or considered doing The Sage Systems test ( www.foodallergytest.com ) to see if you react immunologically to the foods you describe or to others (e.g. dairy, soy, corn)?

I think I am allergic to tomatoes. I eat a lot of potatoes and they don't seem to bother me but peppers give me heartburn sometimes. I had fibromyalgia for about 3 years but my pain pretty much disppeared after going gluten, dairy and soy free. I occasionally have flares of pain but it usually starts with a headache. I know that air pollution is a big trigger in my area. When I am in that state, I ask people around me if they are also having headaches and the number who do is downright frightening at times.

Do you take any glucosamine? Just wondering what your experience with it was. We now know that glucoamine works by blocking the lectins from wheat, et al which are attaching to joint cells and inducing inflammation. But it is definitely dose dependent, which means it is quality dependent. there are some useless formulations out there.

Thanks again for the great post!

John

[mrsD]

I think another big trigger is citrus. I gave that up, based on an elimination
diet suggestion from the old board OBT...last spring.

What a difference!
I miss my OJ and blood oranges, but my knees no longer hurt to walk.

Citrus is a very forgotten allergen for some with arthritis.

One cannot make generalizations basically. Each person might have their own
"enemy"...

I'd like to see documentation about this:

Originally Posted by DogtorJ

Do you take any glucosamine? Just wondering what your experience with it was. We now know that glucoamine works by blocking the lectins from wheat, et al which are attaching to joint cells and inducing inflammation. But it is definitely dose dependent, which means it is quality dependent. there are some useless formulations out there

BTW glucosamine does nothing for me...nothing.

[SnooZQ]

DogtorJ, I have been DF, EF & some-legume free for about a yr based on an IgG blood test. All measures of dairy & its components especially were waaaaay high. I don't think I feel any better with that stuff taken out. Nothing as dramatic as the GF & NF diets were for me. BUT, I did have a significant reduction in my out-of-bounds, worrying me crazy, serum globulin level after being on that restrictive diet for many months.

As a child, I loathed potatoes & tomatoes. Even before I realized the nightshade thing applied to me, I'd found that green tomatoes, and also certain 'heirloom" tomatoes (Siberian type; greenish, purplish, brown) made me ill to eat. I've even gotten very ill when DH cooked heirloom tomatoes, just hanging around the kitchen when that tomato juice was boiling. Not asthma. Pain all over, headache & nausea. Go to bed & moan, felt like a really bad flu. No body else caught it! Was scratch-tested & IgG tested for tomatoes, & OK.

Now that my background level of pain & inflam have come down, it's pretty apparent that I don't tolerate peanuts well. I'm OK with a few nuts, but eating 1/2 cup in a day will reliably produce swelling & pain that takes about 24-48 hrs. to resolve, as long as I don't dip into the peanuts again. IgE & IgG are negative for peanut; I'm guessing it's either a lectin thing or a goitrogen thing.

I've taken glucosamine on & off for ... could it be a decade? Probably. Kept hoping it would help my knees. I found that for me, the only form that makes a difference is N-Acetyl-Glucosamine. The HCL & sulfate forms were duds. Haven't used it a lot lately. I was trying to keep supps constant while I gave NFD a trial.

I'd heard that glucosamine binds wheat lectin, but I thought there were other ... glucosaminoglycans? thingy molecules that bound nonwheat lectins. If glucosamine does it all, I'll give it another shot.

MrsD, sorry if I offended by giving the impression that everyone with arthritis responds to NFD. I don't believe that's the case ... but I consider myself a fairly well-read person & I wasn't familiar with the concept of nightshade sensitivity. Sure wish I'd figured it out sooner. My intention in sharing my story was mostly to get the word out about the possibility of nightshade sensitivity. As I've talked to friends & extended family, I've come to realize that many people don't know about the nightshade family.

I will think about doing a no-citrus trial. But at this very moment, I am loathe to remove even one more food from my diet! It might have to wait a few more weeks. I was allergic to citrus as a child, outgrew reactivity on tests, & now love it. I'm glad that citrus-free has worked so well for you.

Is there any chance that citrus reactivity for some people could be an acid-reaction? I've noticed that coffee agrees with me ever so much better since I started tossing a couple PreLief tabs into it. Ca glycerophosphate, sort of an antacid compound. Acidic stuff, juices/pickles/even candies w/citric acid, is something I do best with in extreme moderation. Acidic overdose doesn't seem to increase my visible inflammation, but it DOES increase my pain.

Thanks for your comments!

[mrsD]

Snoozie...

I don't know why you got that impression.

Regarding tomatoes... there is also a histamine issue. Some foods are high
in histamine and others are histamine releasers. So some people may
react to tomatoes and not the other nightshades to the same extent.

Here is an interesting website:
http://www.urticaria.thunderworksinc...whistamine.htm

[NancyM]

You might also want to consider a vit. D deficiency. I've had amazing results since I started taking 4,000 iu a day. Even my knees don't hurt now.

Here's a very interesting lecture on vitamin D and those of us who live indoors, clothed and avoid the sun.
http://www.insinc.com/onlinetv/direc...vnetplayer.htm

[KimS]

Originally Posted by mrsd

...glucosamine does nothing for me...nothing.

Dh swears by glucosamine, MSM and chondrointin for his joints. It's one of the few supplements that he will remind me to get BEFORE we run out.

I must admit, I don't notice a difference with them either but I've upped my dosage and will see. I have certain joints in my back that get a minor ache once in a while but it doesn't 'seem' to be attached to any food. Because dh swears by it so much, I'm hoping that upping the dosage will improve that dull, minor ache.

As I'm keying this in, I'm realizing that it's not hurting at all right now but I can't really say yet if it's this stuff... until I cut it out and add it back in a few times to see if there's a correlation.

I'll let you know when I've got some 'better' results.

[DogtorJ]

What brands of glucosamine are you using?

In controlled veterinary studies, a brand called Cosequin keep coming up onn top. It is made by a company called Nutramax, which also makes a human product called Cosamin DS.

I just had this discussion with an orthopedic surgeon client of mine and he said that they recommend the Cosamin as well. It is sold through most Walmarts and many pharmacies. It is pretty expensive but the word is that you get what you pay for with glucosamine products.

[mrsD]

After talking to hundreds of people over the years about glucosamine is this:

There are those for whom it just does not work, or is not needed.

Then there are those who swear it is terrific.

Since glucosamine is made in your body from the glutamine chemistry, it
is dependent on glutamine intake. There are many enzymes involved with this
system, and if any one of them is faulty, then the glucosamine synthesis fails.
I suspect that people vary in their need for it, and those who do not make
it well for themselves, do well on supplements. Those who have enough, don't need more.

I've posted that chemistry many times on both boards...so I won't post it here.
Glutathione in the liver is also made from l-glutamine.

For me SAMe has been the exact opposite. Now that does work for me!

BTW Cosamin DS had a very big problem in the not too recent past. Its glucosamine product was
contaminated with high levels of manganese. This has been fixed...but I don't think they are
so terrific to have not been careful in the first place.

[SnooZQ]

I did try the Cosamin, & it didn't work for me. The brand I use is Beyond a Century NAG, which comes as a bulk powder & is comparatively inexpensive.

Over the years I've tried ... MSM, NZ mussel, shark cartilage, Cetyl Myristoleate, Celadrin, Sam-E, Herbal Cox-2 inhibitors, Curcumin, Boswellia, Niacinamide, Vit. D (serum levels are great). And of course, the fish oil. Could be I've forgotten a few ... These were tried mostly for my knees, Dx severe OA at age 42, with rec. for knee replacement surgeries, one at a time.

I don't use MSM & Sam-E as much as I used to because they've become sedating. Never before. The Sam-E is really great for my knees at only 200 mg/day. Combined w/EPA concentrate FO, Sam-E was the best thing I'd ever found for my knees.

But for some reason, in the past few years, by day 3 of Sam-E at 200 mg. per day, I just want to sleep all day with my painfree knees. So that has become a bit impractical. And yes, I've come to believe that I may be the only person in the world who reacts to Sam-E this way. I'm guessing it's a sulfur thing. Have often wondered whether my acetylation, sulfation, & methylation Phase 2 pathways are a tad SNAFU'd.

If anyone has insight into the Sam-E sedation issue, or something I could do/take etc. to counteract this prob., please share. I've tried taking it at bedtime, but the sedation is 24/7 when I take it regularly & taking 100 mg., while less sedating, is also less helpful for the knees. They say some people have suffered ... hypomania from Sam-E?

Interesting post about the L-glutamine, mrsd. I had mostly heard about cysteine, taurine, and glycine being important for glutathione synthesis.