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amberlynn

Gluten Sensitivity Linked To Pain And Fluidity?

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Is that possible?

I know that autoimmune diseases can run together (though I am not diagnosed Celiac, I maintain that I'm highly allergic b/c I do suffer BADLY with even the slightest cross contamination!). And 2 co-workers want me to get tested for RA. I have not been tested for ANYTHING. I'm getting really frustrated with the lack of concern... because to me, this seems like cause for concern when I am not even 30 years old.

So, I cut the gluten out in October. I had horrible pain, mostly in my right hip. But my joints would ache, and my knees have made noise for years. The hip pain may have distracted me from other pain, but my legs always hurt (in fact, when I use to manage a theater, I would go home in TEARS my legs hurt so bad after an 8 hour shift, I was only 24). My hands as well.

Well, now if I get glutened, the pain is horrible. It takes a few days, but I've tracked it down, and can tell you how long it takes before I'm hurting. That night, I'll start with a mild headache and a slight rash. Next morning, awful migraine. The next day, the awful hip pain returns. Day 3, all over pain. Hands, knees, legs, feet, shoulders... everywhere. Day 4, wake up feeling like I have fluid in my hands, knees, elbows, right hip, right shoulder, both ankles. Soooo stiff. Day 5, getting back to normal, but still stiff... Day 6, back to being horribly stiff. I had to take an anti-inflamatory pill this morning for it. My back is soooo achy as well.

It's just so ridiculous how much PAIN is involved! It was my hubby's fault, he forgot to wash his hands... it happens about once a month, takes me 2 weeks to get back on track (and have my sparkle back ;) ).

Asking a co-worker who has RA (and suggested I get tested), she said her symptoms started out quite similar. She is not gluten-free, and is on meds for it.

I just don't think I can handle more of this... I know as long as I stay gluten-free, I remain symptom free. I just feel lately like I'm fighting an uphill battle with my own body!! Why does it rebel against me??? And this happens the same way every time I get glutened from the teeniest, tiniest amount of CC.

Ideas? Should I ask for an RA test??

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Yes, there is a lot overlap in auto immune diseases.

I've had arthritis my entire adult life but did not figure out that I was gluten intolerant until about 25 years into that adult life, in my forties, if I had been diagnosed accurately way back, there is no telling how much different my life would have been and be now, how much damage I would have avoided.

I was diagnosed accurately with the form of arthritis I have, and had a regular physician who understood it, but when I moved to a different state, I discovered that most physicians are dumber than a box of rocks with this because it's relatively rare. Because I am sero negative on blood tests, which is the first test they will run, and because I have worked diligently in my life to keep my range of motion, unless I wave an x ray in front of their faces they won't believe it, and even so, I've had 2 alleged, snotty Rheumatologists tell me I merely had fibro when they did the initial exam. (my current PCP actually gets it ) Rheumatologists are programmed to evaluate patients for drug treatments. If they don't think you are a candidate, they don't want anything to do with you.

I am very highly motivated to stay on a gluten free diet because I don't like flaring more than necessary. My body doesn't tolerate much in the way of any anti inflammatories or other drugs, and because we already run a higher than normal risk of some cancers, the fashionable, anti tumor necrosis factor biologicals, which are linked with an increased risk of that, don't sound like such a great idea. I also studied a great deal what the patients on them were saying on the arthritis boards. They seem to work well for some people with rheumatoid arthritis, but not as well for other kinds, and then there is the problem when the body adapts and the drug doesn't work so well anymore so then another kind is tried, and another. Originally they were designed to be used alone, but doctors end up still dosing people with 2, 3, 4 kinds of drugs besides that, all with side effects. Also, before they will put you on these, they will run you on every sort of crappy drug imaginable, like steroids, with rotten side effects, to prove to the insurance companies that they make you sick so you can take the better, more expensive ones. I watched people over a period of years go thru every drug imaginable, end up disabled, and still end up not able to walk. What sort of life is that ?

It's just easier to stick to the diet.

I'm writing this so if you go ahead and get the run around from the medical profession, you can still take solace in the fact that you can control your symptoms just as well as somebody on a heavy drug regimen. Being treated for the arthritis will NOT change your gluten intolerance, nor make it go away. Remember also, that anything you put in your mouth that isn't gluten free, including drugs, will flare you.

I accept flaring up sometimes as part of the life cycle. Because when I'm off of drugs (I did a lot of ibuprofen in my twenties and thirties) I will come OUT of a flare much faster because my kidneys and liver are not being stressed. Right now, for example, I'm sore because I did a lot of physical activity today, and it's late. And I'm getting old. I'll sleep and feel better tomorrow. Fear of pain can set off negative expectations. I have felt MUCH worse on gluten and drugs.

Since you've also said it has been only since October that you went off gluten, give it a bit more time to heal up and to adapt to your new life.

You could have additional food sensitivities besides the gluten. Common ones are soy and casein, milk proteins, some people also react to corn, or the nightshade family.

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I think you found the answer already. I also had arthritis with all the signs of it being RA but only a week positive in the blood tests for it. In the long run I was soooo happy I was not diagnosed with it because I would simply be popping meds and would have stopped looking for the real cause, gluten.

It took me about 6 months on the diet, really strictly, for the arthritis to go into remission and even the tinest bit of CC would cause a flare for the first couple of years. Since you have noticed a good resolution of symptoms gluten-free and have noticed they reoccur with a glutening IMHO you have the answer. Interestingly one of the celiac associated genes, I have a double dose of it, is considered a gene associated with RA here in the US. It is recognized as a celiac gene in the Far East and in Europe. I would encourage your friend with RA to give the diet a try in addition to her meds. She may get more relief than the pills from the diet. She may not but it would be worth a shot in my opinion, especially if she has been diagnosed with IBS or has migraines and/or balance issues.

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I have also found that nightshades (potatos, tomatoes, all peppers and eggplant)and soy cause my arthritis to act up severely. Maybe if you try eliminating those you might feel better. I said might. Hope you get to feeling better.

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My doc gave me (forgive me spelling!) Meloxicam? It's an anti-inflammatory. It worked yesterday, thankfully! Today I woke up mostly pain free. I was glutened a week ago today. I have zero interest in taking liver and body damaging pills for forever and a day!

I'm just so tired of being in pain and tired. I know that I can't just take a pill and be OK. My gluten sensitivity (or Celiac, whatever) is obviously linked to this, since I'm fine so long as I stay gluten free - and make it to the gym a minimum of 3 days a week, lol. I think that's probably why it was so bad this time. I've been potty training my 2 year old, and only made it to the gym on Friday.

Thank you very much for the advice. I feel like I'm just not taken seriously, and I'm really debating on taking this to my doctor. I AM writing down my symptoms EVERY day (even if there aren't any!), any known glutenings, etc. He wouldn't give me the Celiac test so... Though I know that its not always accurate. It just leads me to believe he's going to say its something else... and I'll need to find a new doctor.

My co-worker is seriously considering going gluten-free as well. She said she would have a hard time sticking to the diet... my response was "if you tried it for 2 weeks and your pain went away, then it would be worth it, wouldn't it??" She agreed. I'll give the doc a call on Monday I think. Schedule my yearly physical. Go over what's been going on, and hopefully the insurance company will pay for the testing...

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