gluten-free Still Having Symptoms

[Mrs. Smith]

Hey guys,

I am 4mos gluten free with a few setbacks from sauces and dressings. Ive been pretty good about the diet. I have my own utensils, etc. I find that I am still having symptoms of peripheral neuropathy and muscle pain/twitching. Its worse when Im menstrating or am really exhausted. Im taking all the vitamins recommended b12, magnesium, enzymes, etc. Im just wondering if it takes a while to heal or if any one has felt better slowly over time. My stomach is a million times better. No more D unless Im on my period and no pain. Im regular for the 1st time in my life. I am just sick of the muscle pain and tingling in my feet oh and the DH. Just need some words of encouragement I guess. Ive had all blood tests so its nothing else and I have more energy since gluten-free but my muscles and body get fatigued alot when I push it although I am only 28, after a hard physical exertion I feel like Im 90! HELP!!! Do I just need to be more patient or what?

[YoloGx]

Sounds like you have done a lot of good work on yourself. Meanwhile however it often takes a while for the villi etc. to heal not to mention other systems such as nervous etc. etc. So have patience.

Patience or not, I find taking certain detox herbs like dandelion, Oregon grape root or cleavers really helps from time to time. Marshmallow root caps taken daily helps reduce inflammation and heal the villi. I have discussed this a lot elsewhere.

Meanwhile, recently I went off all grains. Basically I am eating a cave man (or woman!) diet. I am finding at last I am healing systems and symptoms that were resistant and just not going away. I have heard good things about this from others. You might want to check into it.

I also avoid the nightshade family--potatoes, tomatoes, peppers. This helps me and many others with celiac quite a lot.

Meanwhile you may also be allergic or reactive to other things than just gluten...Might be time to be more of a detective about it. Heavy metal toxicity from mercury fillings can also be a culprit...If you choose to loose the mercury, treat it with respect and take it slow. Saunas by the way are great for sweating it out. Just change your towel afterwards however!!

Further there can be trace sources of gluten you are reacting to but aren't conscious of, like pet food or soaps etc. These days I always wash my hands just in case I got exposed to gluten from some unknown source -- before eating even just a snack.

Also make sure your partner or date is not glutening you inadvertently! Or taking some medication with trace gluten in it or on it...etc.!!

Good luck! It will get easier in time...

Bea

[Mrs. Smith]

Sounds like you have done a lot of good work on yourself. Meanwhile however it often takes a while for the villi etc. to heal not to mention other systems such as nervous etc. etc. So have patience.

Patience or not, I find taking certain detox herbs like dandelion, Oregon grape root or cleavers really helps from time to time. Marshmallow root caps taken daily helps reduce inflammation and heal the villi. I have discussed this a lot elsewhere.

Meanwhile, recently I went off all grains. Basically I am eating a cave man (or woman!) diet. I am finding at last I am healing systems and symptoms that were resistant and just not going away. I have heard good things about this from others. You might want to check into it.

I also avoid the nightshade family--potatoes, tomatoes, peppers. This helps me and many others with celiac quite a lot.

Meanwhile you may also be allergic or reactive to other things than just gluten...Might be time to be more of a detective about it. Heavy metal toxicity from mercury fillings can also be a culprit...If you choose to loose the mercury, treat it with respect and take it slow. Saunas by the way are great for sweating it out. Just change your towel afterwards however!!

Further there can be trace sources of gluten you are reacting to but aren't conscious of, like pet food or soaps etc. These days I always wash my hands just in case I got exposed to gluten from some unknown source -- before eating even just a snack.

Also make sure your partner or date is not glutening you inadvertently! Or taking some medication with trace gluten in it or on it...etc.!!

Good luck! It will get easier in time...

Bea

Thanks for the suggestions. I do avoid nightshades alot of the time. I do have fillings but not sure if they have mercury. Got them in 96'. Im pretty text book celiac right down to a parent having it so Im pretty sure thats it. I was just wondering if anyone had taken a while to get better. Does the nervous system take longer to heal? Can I eventually eat nightshades and dairy or are those also for life? Why do my symptoms vanish for weeks and then return? They are less severe which is a good sign.

Its really uncomfortable to just be in pain all over your body however mild. My periods seem so much worse too. I feel like Im just more aware of my body or something.

[YoloGx]

It seems like every person is a little different. Give it time. Try to develop a sense of humor about it. Take care of yourself meanwhile.

The milk sensitivity is something that many overcome. For myself I can now tolerate non fat plain organic yogurt but no other milk products. My mother and brother who also have celiac seem to do fine with it plus lactaid. Lactaid for me makes me ill.

Sounds like you can have something from the nightshade family occasionally...Not everyone can. However many do.

I do suggest trying to detox -- using herbs, saunas, exercise, eating lots of greens...even mud packs on the hands and feet can help.

I suggest you avoid sugar(s) meanwhile. Hard but worth it in spades! Especially if you are having the hurting all over symptoms as you say and as I used to by the way... You might have candida overgrowth. If you experience unpleasant withdrawal symptoms when you avoid sugars and quick sources of sugars from say grains and fruits its likely you have it. If so make the attempt to avoid it. You will feel better though it often takes a while. Way worth it however.

And you are taking your cal/mag/zinc, trace minerals and B vitamins, Vit. E, D& A fish oil, evening primrose oil etc., yes? Apple cider vinegar taken with the minerals helps one better absorb them by the way...

Bea

[Mrs. Smith]

It seems like every person is a little different. Give it time. Try to develop a sense of humor about it. Take care of yourself meanwhile.

The milk sensitivity is something that many overcome. For myself I can now tolerate non fat plain organic yogurt but no other milk products. My mother and brother who also have celiac seem to do fine with it plus lactaid. Lactaid for me makes me ill.

Sounds like you can have something from the nightshade family occasionally...Not everyone can. However many do.

I do suggest trying to detox -- using herbs, saunas, exercise, eating lots of greens...even mud packs on the hands and feet can help.

I suggest you avoid sugar(s) meanwhile. Hard but worth it in spades! Especially if you are having the hurting all over symptoms as you say and as I used to by the way... You might have candida overgrowth. If you experience unpleasant withdrawal symptoms when you avoid sugars and quick sources of sugars from say grains and fruits its likely you have it. If so make the attempt to avoid it. You will feel better though it often takes a while. Way worth it however.

And you are taking your cal/mag/zinc, trace minerals and B vitamins, Vit. E, D& A fish oil, evening primrose oil etc., yes? Apple cider vinegar taken with the minerals helps one better absorb them by the way...

Bea

oh yeah I take all of those. I do feel better when I take it easy on sugar. I tend to over do it sometimes with food when I pms. I crave heavier foods. I am taking epsom salt baths and getting massages every 2 weeks. Seems to help. I have been stool tested 2x for candida and its neg both times. I take tons of acidopholis and enzymes. I guess Ill go more on the meat and veggies diet for a while and go easy on the rice pastas and heavy foods. That seems to work really well if I space it out and eat mostly "caveman" I am one of those people who feels great on red meat, O+ blood type. I dont take D yet what kind and dose should I get? Thanks for all the advice.

[YoloGx]

Testing for me never revealed candida, however I certainly did suffer from some kind of candida like overgrowth both internally plus externally it caused some kind of eczema like stuff that was very irritating. I believe my system was way out of balance eating all those grains...as well as in the past fruit and sugar.

Like you I am type O and have celiac that runs in the family. Just wish I had known about it earlier. I am back on the cave man diet and find it works the best. Every once in a while I crave rice etc. however I find if I eat some sunflower seeds and/or yogurt with stevia it gets rid of the craving. I also drink a lot of fresh lemon juice mixed in water with stevia as a pick me up. I seem to be fine with the lemons--its just the fruit sugar I seem to be sensitive to.

Lately I have taken to baking squash and yams. I slice them in half and rub them with oil and sprinkle with salt. They are really excellent and seem to take away the need to eat the grains since there is a lot of carbohydrate in them. This makes me think however it really isn't candida per se since the squash and yams don't make the overgrowth or whatever it is bloom. Perhaps its just an allergy to all those grains--i.e., not just the glutenous ones??

Whatever -- I feel a lot better without those grains!

Straight cod liver oil is great--however lately I have been using the Now brand of Ultra A&D (25,000 IU of A; 1,000 IU of D) once daily... And did I also say I take the co-enzyme B's? They work great and have been a godsend to me since in the past previous to taking them the sheath on my nerves was down 50%!! Turned this around almost immediately. Took away a lot of the pain by the way all by itself as well as heart palpitations and poor health. I take the country life ones since they are cheaper than the sub-linguals.

Bea

[ang1e0251]

I am 4mos gluten free with a few setbacks from sauces and dressings. Ive been pretty good about the diet. I have my own utensils, etc. I find that I am still having symptoms of peripheral neuropathy and

For me the neuropathy did take months to gradually clear up with setbacks when I was glutened.

muscle pain/twitching. Its worse when Im menstrating or am really exhausted. Im taking all the vitamins recommended b12, magnesium, enzymes, etc.

This sounds like you are not taking nearly enough magnesium. You need even more when you're menstruating. I recommend a book call "The Magnesium Miracle" by Dr. Carolyn Dean. I wasn't taking enough and the book helped me a lot. She tells how much to take for different conditions by weight.

and the DH.

If you still have DH, it should be getting a little better every day. It does take weeks to heal. But if it isn't improving or breaking out anew, you are getting gluten somewhere. I know mine only breaks out with repeated exposure to gluten.

Just need some words of encouragement I guess. Ive had all blood tests so its nothing else and I have more energy since gluten-free but my muscles and body get fatigued alot when I push it although I am only 28, after a hard physical exertion I feel like Im 90! HELP!!! Do I just need to be more patient or what?

Hang in there! Up your magnesium, that should help enormously. Are you taking sublingual B12 the methyl kind? It's absorbed much better.

[Mrs. Smith]

Testing for me never revealed candida, however I certainly did suffer from some kind of candida like overgrowth both internally plus externally it caused some kind of eczema like stuff that was very irritating. I believe my system was way out of balance eating all those grains...as well as in the past fruit and sugar.

Like you I am type O and have celiac that runs in the family. Just wish I had known about it earlier. I am back on the cave man diet and find it works the best. Every once in a while I crave rice etc. however I find if I eat some sunflower seeds and/or yogurt with stevia it gets rid of the craving. I also drink a lot of fresh lemon juice mixed in water with stevia as a pick me up. I seem to be fine with the lemons--its just the fruit sugar I seem to be sensitive to.

Lately I have taken to baking squash and yams. I slice them in half and rub them with oil and sprinkle with salt. They are really excellent and seem to take away the need to eat the grains since there is a lot of carbohydrate in them. This makes me think however it really isn't candida per se since the squash and yams don't make the overgrowth or whatever it is bloom. Perhaps its just an allergy to all those grains--i.e., not just the glutenous ones??

Whatever -- I feel a lot better without those grains!

Straight cod liver oil is great--however lately I have been using the Now brand of Ultra A&D (25,000 IU of A; 1,000 IU of D) once daily... And did I also say I take the co-enzyme B's? They work great and have been a godsend to me since in the past previous to taking them the sheath on my nerves was down 50%!! Turned this around almost immediately. Took away a lot of the pain by the way all by itself as well as heart palpitations and poor health. I take the country life ones since they are cheaper than the sub-linguals.

Bea

I just looked at the country life coenzyme b. It has a lot of niacin in it. Does it make you flush? I weigh 100lbs and really sensitive to side effects. I already take a prenatal with b in it and sublingual b12. I might try them. How many do you take a day maybe I can take a 1/2 dose.

[loxleynew]

I read your first post and relate to one of your symptoms at least. Ive been gluten free for just over 3 months now and I'm 25. Whenever I do any physical exertion I also feel like i'm 90. It sucks I have to sit down and relax for at least an hour afterwards, even simple things.

I'm starting to question whether my vitamins have gluten in them as well. It doesn't say if they do however maybe this is also happening to you? I might switch them and see if it helps.

[YoloGx]

I just looked at the country life coenzyme b. It has a lot of niacin in it. Does it make you flush? I weigh 100lbs and really sensitive to side effects. I already take a prenatal with b in it and sublingual b12. I might try them. How many do you take a day maybe I can take a 1/2 dose.

I take two a day--away from food (like 2 hours before, one hour after--often at night or early in the morning. It hasn't made me flush.

As said, hang in there. It often does take time, esp. dh.

The idea of more mag. is a good one...

Be on the lookout for other allergens too. I found I am allergic to coconut milk for instance and even carrots...

Bea

[Mrs. Smith]

I took an extra magnesium today. I have a massage appt. later. I feel like crap I have D and muscle pain. Does anyone think that massage will be good or bad on a day like this. I certainly dont want to feel worse tommorrow!

[Mrs. Smith]

I read your first post and relate to one of your symptoms at least. Ive been gluten free for just over 3 months now and I'm 25. Whenever I do any physical exertion I also feel like i'm 90. It sucks I have to sit down and relax for at least an hour afterwards, even simple things.

I'm starting to question whether my vitamins have gluten in them as well. It doesn't say if they do however maybe this is also happening to you? I might switch them and see if it helps.

Thank you. I shop at a health food store for all my vitamins and am pretty dilligent about checking labels. Im 99% sure they are all gluten free. I work at a busy hotel/bar and after a long night of bartending when its slammed I feel like crap for like 2 days! I am only 28 and I cant beleive my body is so taxed. I have 2 kids and Im very active. I just try to take care of myself the best I can. I drink alot of herbal teas and take epsom salt baths when I am physically exhausted. There are brands like country life vitamins that are certified gluten free. We are both healing it sounds like we can relate to eachother, I think I got glutened by a tamale the other day cause I am SICK today!

[Shanmegjilal]

I've been getting worried,too.I've been gluten free for 5 weeks and my symptoms of numbness and tingling in my extremities hasn't changed at all.In fact my back has gotten even itchier!!!Is this normal?People who had these symptoms, it's months for them to clear sometimes??????????????I've begun to worry that something else is going on????

[Mrs. Smith]

I've been getting worried,too.I've been gluten free for 5 weeks and my symptoms of numbness and tingling in my extremities hasn't changed at all.In fact my back has gotten even itchier!!!Is this normal?People who had these symptoms, it's months for them to clear sometimes??????????????I've begun to worry that something else is going on????

Have you tried magnesium or sublingual b12? I learned about those for celiacs on this site. I have to say they have both helped though my symptoms still linger. Im starting to think taht my vitamins get really depleated during my menstral cycle and every time it takes a week or two to get them back on track. Does anyone think hormones are a factor? Will this rectify itself gluten-free? It seems like the worse my period is the worse my symptoms are and this time was a pretty bad one and I had overexerted myself prior to it. Can hormones cause setbacks?

[ang1e0251]

Have you tried magnesium or sublingual b12? I learned about those for celiacs on this site. I have to say they have both helped though my symptoms still linger. Im starting to think taht my vitamins get really depleated during my menstral cycle and every time it takes a week or two to get them back on track. Does anyone think hormones are a factor? Will this rectify itself gluten-free? It seems like the worse my period is the worse my symptoms are and this time was a pretty bad one and I had overexerted myself prior to it. Can hormones cause setbacks?

The book I read about magnesium said you need extra right before and during your period. That's why some of us crave chocolate, a food high in mag. Also it says you should increase your dose on days you overexert yourself.

[ang1e0251]

I took an extra magnesium today. I have a massage appt. later. I feel like crap I have D and muscle pain. Does anyone think that massage will be good or bad on a day like this. I certainly dont want to feel worse tommorrow!

Just wanted to tell you to spread your mag. doses around. Don't take them all at once. Take morning and night. I'm starting to add to midday too until I reach the proper dose.

[loxleynew]

I've been getting worried,too.I've been gluten free for 5 weeks and my symptoms of numbness and tingling in my extremities hasn't changed at all.In fact my back has gotten even itchier!!!Is this normal?People who had these symptoms, it's months for them to clear sometimes??????????????I've begun to worry that something else is going on????

I had numbness and tingling as well as a symptom. It went away within weeks after going gluten free, but then again everyone is different.

Ive been wondering why I have been so tired the past 2 days and realized on sat. night when I ate some chicken at a friends house I forgot to see what was in the spices he put on it. Although Ive never had gluten symptoms last this long before =/ Really feels like a burden sometimes to read every label everywhere.

[loxleynew]

I took an extra magnesium today. I have a massage appt. later. I feel like crap I have D and muscle pain. Does anyone think that massage will be good or bad on a day like this. I certainly dont want to feel worse tommorrow!

Just wanted to tell you to spread your mag. doses around. Don't take them all at once. Take morning and night. I'm starting to add to midday too until I reach the proper dose.

How much mag do you all take? I take usually around 500mg. 250mg in the morning and 250 at night. It has helped with muscle twitches and pain.

[Mrs. Smith]

How much mag do you all take? I take usually around 500mg. 250mg in the morning and 250 at night. It has helped with muscle twitches and pain.

Thats about how much I take now. I take it now with my morning and dinner regimine.

[Mrs. Smith]

Have you tried magnesium or sublingual b12? I learned about those for celiacs on this site. I have to say they have both helped though my symptoms still linger. Im starting to think taht my vitamins get really depleated during my menstral cycle and every time it takes a week or two to get them back on track. Does anyone think hormones are a factor? Will this rectify itself gluten-free? It seems like the worse my period is the worse my symptoms are and this time was a pretty bad one and I had overexerted myself prior to it. Can hormones cause setbacks?

The book I read about magnesium said you need extra right before and during your period. That's why some of us crave chocolate, a food high in mag. Also it says you should increase your dose on days you overexert yourself.

WOW! I did not know this. I totally crave chocolate so bad and if I eat too much of it I get a tummy ache. Im definatley gonna read this book! Sounds like I need it!LOL!

[YoloGx]

However if you are getting D maybe now isn't the time to be taking extra mag?? Since too much mag. will cause D all by itself.

Other thing. I hate to say this but You might want to change jobs or do something so you don't get exposed to gluten at your job. Certainly wash your hands all the time and don't brush your hand against your mouth.

Another thing to look into (of course you probably already know this) is to check out your beauty products...Many have gluten, esp. mascara and lipstick etc. not to mention shampoo etc.

Bea

[ang1e0251]

You are right that mag. can loosen the stool. When you are increasing, you must spread the dosage out during the day and only increase slowly. The book advices to add a dose every two days at minimum. She also says that she personally uses part tablets and part mag. oil she applies after her shower. You can find out more about that on her website drcarolyndean.com

I'm taking about 500 mg right now. Working up to 800 then see now I feel.

[YoloGx]

Totally right. I take the magnesium citrate powder so its easy to control the amount. I personally use 630 mg a day generally in two divided doses (i.e., half tsp. twice daily). But not if I have D! Mag. is great for building up the nervous system by the way. Good to use together with Calcium Citrate and Colloidal minerals taken with apple cider vinegar to help with absorptioin... Am actually getting stronger all the time rather than weaker--as I had been in the past.

Bea