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Beth in NC

Dang! What Helps With The Pain?

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Neuropathy pain, muscles pain....all my PCP told me, when considering it fibromyalgia, was ibuprophen and alternating with extra strength tylenol. I've taken 4 ibuprophen, but no tylenol as I don't have any in the house. I need to find a gluten-free version.

What else helps? I feel like one big muscle spasm with occasional electric current running through it!

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I'm so sorry you are in pain. I don't know much what to do about pain as well. I take ibuprofins for pain I absolutely cannot deal with, such as cramping for my period. But be careful, I think I was glutened off a generic brand of ibu's yesterday. I woke up with new Dh sores on my face. :(

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I've had good luck with Safeway brand Ibuprofen both tablets and caplets. I checked both online and on the phone and they claim to be gluten free. They haven't bothered me despite my extreme sensitivity so they may be worth trying for you too.

Herbally, taking valerian and chamomile can help relax you, which at times reduces the pain. Marshmallow root and/or slippery elm reduces inflammation intestinally etc. which can help reduce pain (i.e., as a result).

Sometimes exercise helps reduce neuropathic pain; at least I have found it to, especially yoga or stretching as well as walking. Meditation itself can be powerful--though I find it more effective with the yoga.

I have found taking co-enzyme B vitamins feeds the nervous system (which is often malnourished in those who have celiac). The co-enzyme B's go directly into the blood stream. Regular B vitamins do nothing for me. I take them away from food--2 once a day either at night or first thing in the morning. This has hugely improved my health and removed a great deal of Beri Beri like symptoms with all that burning pain in my feet and calves and forearms as well as jerking etc. at night. It also stopped my heart from racing like it used to plus made me more resistant to getting colds and flue etc.. plus I can handle going into a sauna now whereas before I was in danger of fainting.

Avoiding all trace glutens also has overall made the fibromyalgia like pains I had to go away. If they come back, I can tell I have been cross contaminated.

Taking fibronylitic enzymes has reduced scar tissue from old accidents, thus also reducing and finally eliminating pain in my neck and elbows as long as I keep taking them. I use bromelain/papain with nattokinase. I usually take them with the co-enzyme B vitamins.

Avoiding sugar or large amounts of starch (especially ground flours etc. or white rice) is huge. Eating it for me can cause me a lot of inflammation from rampant candida overgrowth. I thus take enterically coated pro biotics, garlic, pao de arco, and oregano oil. Unfortunately I am allergic to grapefruit seed extract; however for those who aren't allergic to it its a very potent remedy. Just a few drops in water is an extremely powerful anti fungal. Alternatively I use barberry root as a powerful antifungal. I just put a teaspoon in a cup and add boiling water one to three times a day. Its also excellent as a powder against jock or toenail rot.

If for whatever reason I am faced with my body having been toxified and thus achy and painful joints etc., boiling up dandelion root with yellow dock or oregon grape root with maybe some licorice root and pao de arco (this last to counteract the candida) and then straining and drinking it 1/2 mug at a time at first while its thick diluted half and half with water will usually make me feel much better fairly quickly -- within a day or two at least. I use two heaping tablespoons of each ingredient (except licorice, which only needs one tablespoon) in a large two quart stainless steel or clay pot. Boil and stir down (making sure it doesn't overflow from the frothing licorice root!) then reduce to a low boil 20 to 30 minutes. I keep it in the fridge or just leave it on to simmer in a coffee maker with the herbs right in the pot. Just add more water as you use it. When it looks too thin discard the dregs.

Hope this helps.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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Tylenol is gluten free, I take Tylenol Arthritis. You might want to try Aleve. You take it 2 x's a day, once when you get up and once when you go to bed...it doesn't work immediately, give it a few days, and you can take other pain relievers during the day with it...just always follow the rules with it and never take it for more than 2 weeks at a time. My neuro says it's safe for short time frames.

I think you need a neurological check-up. It's nice to think you can cure it with B vitamins, but some of us need more. I take B12 and now I have added a little B6 (you must be very careful with B6, you can get too much of it) to my regiment, but having the doctor try to pinpoint what's going on is a good idea. I do not take meds for my neuropathy, but I do see a neuro, just to be sure it isn't progressing. B12 is wonderful, but it doesn't work overnight...it takes nerves a long time to heal. Sometimes you may need a little help with the pain while they heal, and I might add, nerves can be painful while healing too. Sometimes it is hard to tell if they are getting worse, or getting better. My neuro and I have discussed the meds you can take for the pain, which thankfully, for now I do not need.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I second the B12 recommendation, and would add magnesium. I had that full-body spasm/electric shock type thing, so I know what you mean. It ALL cleared up completely with B12 and magnesium, which I continue to take.

Recently, I read that magnesium helps decrease blood-brain barrier permeability. That really puts a finer point on the matter.

I hope you get it resolved very soon!


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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I agree about the magnesium; it helps with a great many enzymatic functions which do include the nerves. Just forgot to mention it--so I am glad you did. I have a friend who just can't sleep at all without it. Certainly it helps me to sleep better too. Just have to be careful not to take too much or I get D! But if that happens I just back down on the amount a bit and its OK.

I also take more absorpable calcium (E-Zorb--calcium aspartate anhydrous) since I have great trouble absorbing calcium citrate etc. too and sleep better etc. with it than without it. It too greatly reduces pain I used to have in all my pressure points. I used to be able to peel my fingernails after all plus my teeth just wouldn't harden completely until after I got more strict with my anti gluten diet and then took the special calcium. Every once in a while I experiment going off it usually to my chagrin some of the pain comes back unless I go back on it so its obvious I need it.

I agree its good to get checked out by your doctor, though many docs don't look for anything but the usual things unless you ask them to be more thorough. B-12 or B-6 are not a problem for me...which seems to be the usual mantra. Certainly B-12 and B-6 helped my grandmother and help my older brother (who also has a folic acid deficiency) but is not so much an issue for me or my mother.

I have read many places B vitamin deficiency in general is common with folks who have celiac. It may be chicken or egg which comes first. Unlike many, my mother and I were found to be low on making use of B-1 which is essential for carbohydrate and protein metabolization as well as healthy nerves, brain, eyes, heart etc. Being low on the ability to make use of standard B-1 gave me a kind of inherited Beri Beri despite having overall a very good diet. This was very painful especially when I would try to sleep at night. Like I said doctors in this country often think this can't happen here since we are not a third world country and have all these fortified foods etc. etc. They forget however some Scandinavian families in particular have this tendency--especially ones who also have celiac.

I take the B complex as suggested by my doc. since that way all the B's are in balance. The co-enzyme B's make them way more absorpable than the standard B vitamins since they go directly into the blood stream rather than first through the liver--which for us is often overworked and maybe not be doing its best. There is no way the amount I take is harmful; it is only helpful. The excess just gets peed out. It does not build up in the system. The sorbitol of most sublinguals doesn't agree with me very well however; so I take tablets by Country Life.

I read elsewhere someone was getting B-1 shots from Kaiser but it was only through great perseverance that she got them to test her and then they finally gave her the shots after she had to really insist since they had difficulty believing this even could be a problem even after it was seen to be true by testing. Just taking a little extra B complex on an empty stomach as I do is a lot easier (lol!). I get the large bottle since that way its not so expensive.

Bea


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

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I'm already taking fairly large doses of Calcium/magnesium. I saw my GI doc a couple days ago and he was great, although I don't think he realizes how much pain I'm in at times. I wasn't that bad when there, but if he could have seen me this morning! He immediately ordered a B12 test, among many others. His main focus in getting my diet straightened out, rather than a referral to a neurologist. I think he is thinking it will improve with time and I know he's right. I'll see how I do over the weekend and if it doesn't improve, I'll call Monday and ask about a referral. I was really frank with him the other day, about how so many docs don't know Celiac from a hole in the ground so to speak. He reassured me that he is totally comfortable with dealing with Celiac and he wants to work with me.

I should have gotten some B12 today when I was out, but didn't remember it for the 'fog' in my head and dealing with the pain till I got home and could take something. I'm having to alternate ibuprophen and Tylenol arthritis. It is/was driving me nuts!

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If you have not taken B12 yet, then ask your doctor for a B12 level test first. Once you take B12, the level isn't true.

GI docs and PCP's do not deal with neuropathy like a neuro will. The neuro also does B12 testing, and if you are celiac, then B12 may be a big issue for you.

It's your pain and when you can't deal with it anymore, you will find what you need for help.

Good luck!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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When the B12 level comes back, discuss with your physician the actual level - there is controversy surrounding the defined parameters. Many people have demonstrated symptoms that are relieved by B12 when their levels are in the low normal range. I believe the normal range is 200 - 1200 whatever units, variable slightly depending on the lab technique.

If your doctor is considering this fibromyalgia, there is a recent breakthrough linking fibromyalgia, migraines, and IBS symptoms to several atypical food sensitivities, often including select fruits, vegetables, and/or food dyes.

Check out this website: http://www.nowleap.com/ It looks cheesy, but it's very legitimate. I've had the pleasure of reviewing a leap dietitian's research at a conference, and the dietary aspect of these diseases (fibromyalgia, migraines, IBS) accounts for 90% of the cases.

The downside is there are only 200 dietitians trained in this, you may or may not find one near you. I understand they do phone conferences though.


Celiac Disease 2007

Spinal Fusion 2006

Grave's Disease 2000

There is a way around every obstacle.

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Neuropathy pain, muscles pain....all my PCP told me, when considering it fibromyalgia, was ibuprophen and alternating with extra strength tylenol. I've taken 4 ibuprophen, but no tylenol as I don't have any in the house. I need to find a gluten-free version.

What else helps? I feel like one big muscle spasm with occasional electric current running through it!

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I made an appt with a neurologist that a friend of my moms recommended who helped her with her fibro pain. It isn't till Sept 9th, but the old doc that started the practice 25 years ago could see me tomorow....I decided against him and going with the one who was booked up! There's a REASON that old dude has openings tomorrow, ya know what I'm sayin'?

I got some sublingual B12 just now as well as some L Glutamine.

I'm getting a one hour massage tomorrow at a local massage school!!! I'm kinda scared, because I'm afraid it will hurt since my muscles are sooooo knotted up, but I know it will help in the long run.

Thanks everybody!

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