Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Peripheral Neuropathy


AVR1962

Recommended Posts

YoloGx Rookie

This is awesome Bea that you are getting such good results from the herbs. I was doing well until I got to the end of my cycle this month, then had three days of insane itching - it was a big full moon yesterday too. My liver is overloaded again... but I suppose three out of thirty isn't all that bad! We have had some bugs flying around too so I suspect I'm fighting those off too. I told you I was on Oregon Grape Root too? I have another 6 herbs in my mix. In a way the herbal approach is a very gentle and gradual detox, not radical like the liver flushes that some people do. Glad you are also able to add some things back in to your diet... same here!

Hi AVR and Caroline,

Thanks for the comment Caroline. So many folks seem to be afraid of herbs due to scare tactics by the AMA. And whereas we are all different, herbs can be wonderful for many people if used intelligently and properly. It can be scary for some if they have been given the wrong advice or just have an unexpected reaction or go ahead and use too much of something, or something for too long. However, I will say I have had terrible reactions to many drugs that the AMA prescribed for me. I know I wouldn't still be around in actual fact if I had stayed with their advice--they wanted me to take antibiotics for the rest of my life; failing to notice they caused me rashes and mental confusion. It is fortunate I found many of the herbs to help me so considerably with my liver and kidneys for instance, not to mention endless sinus and bronchial problems I used to have due to congestion from being still exposed to trace amounts of wheat etc. I am endlessly greatfull for the information I gleaned from reading texts by herbalists David Hoffman as well as Michael and Lesley Tierra, to name just a few.

The herbs I mentioned all work well for me except for, as I just discovered, the yellow dock. Tonight my ears etc. have a forest of psoriatic scales in them again. It is the only thing I did different the last few days. I started using yellow dock late Friday and already it was too much for me salicylate wise by tonight. And here I am up late hours again! It definitely adversely affects my already sensitive nervous system.

The other herbs I mentioned (dandelion root, marshmallow root, oregon grape root altenated with barberry root) actually seem to be acting as an antidote for the salicylate sensitivity. Whether this would apply to everyone with this condition, I don't know. However I did read that some herbs do--especially those with berberine, though nettles also act as an antidote (if you need something more astringent).

I don't use a "product" developed by someone else--just the pure raw herbs. I have been studying and using herbs since 1971. I stopped using all herbs except for parsley, leeks and garlic a little over a year ago due to discovering I have salicylate sensitivity.

Recently I developed a problem with my liver and gall bladder getting clogged up. In desperation I used some of my old tried and true herbs that always had worked for me, and discovered I did not have a reaction to them, much to my happy surprise. They in fact brought me almost immediate relief. Since then I discovered that whereas its true most herbs are high in salicylates, it appears that some of them are not--and some actually work as an antidote to it.

Its too bad that yellow dock no longer works for me. It is a wonderful herb for most people, especially good as a gentle laxative and excellent as a blood purifier. It also gently helps clean out the liver and gall bladder.

I am meanwhile on a detox diet. No meat for a month and more raw veggies. Which also means a diet higher in legumes, as well as pears and apples and lemons, which until now I could not tolerate. The herbs seem to be making the positive difference in that department. Otherwise I don't know what I would eat! Not much of a diet since I cannot have nuts (also due to salicylate sensitivity) and must also be off eggs. The only milk product I tolerate is yogurt.

For me so called completely safe culinary herbs like ginger, oregano, marjoram, sage, pepper and mint etc. just do not work for me since they are very high in salicylates.

Caroline, be certain to go off the Oregon grape root and other similar herbs every 10 days to give your body a rest from it. Or even do less--like say 3 days on and 3 days off. Its good to find substitutes. The itching is not a good sign by the way. I hope you aren't reacting to salicylates like I did (and still do). Dandelion root and marshmallow root are usually safe to stay on, but many others need to be rotated and/or just give your body a rest from them for a week or so.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



YoloGx Rookie

Caroline and Bea, please do share what herbs you are using and how they are helping, I would be inteeted in the information.

The product (Ellimis) that I used was a 3-staged, 3 month program that was supposed to flush (detox) the liver. It definately detoxed my liver but it tore up my stomach and cuased stones in my kidneys. I have been extremely careful with all herbs since.

How awful! This is why I hate "formulas." One size does not fit all. It is best to figure out what is best for you and try one herb at a time if you haven't tried them before. It is not good to keep on them if they "tear you up." That is almost always a good sign to stop, no matter what it is you are taking--no matter who it is that is giving something to you.

Also for you, like me, from what you said, you need to avoid high salicylates. So many if not most herbs are very high in salicylates. This is why I have started investigating homeopathics as an alternative. Unfortunately however most are made with either glutenous alcohol or milk sugar (lactose). I seem to tolerate the lactose these days, but couldn't always, and many here on this forum cannot. I think there are sources of gluten-free and lactose free homeopathics more than likely. Just haven't run into them. I have heard about them however.

Dandelion and marshmallow root by the way are generally considered excellent for both the liver and the kidneys and if my body is a good guinea pig, may be low in salicylates and seem to act as an antidote if I am correct.

I read that the berberine in golden seal also acts as an antidote for salicylate sensitivity. Oregon grape root and barberry root I think are better (since they are more detoxing and "antilithic"--dissolve cholesterol liver and gall bladder stones--am not so certain however about them dissolving kidney stones) as well as cheaper herbs in that department (i.e., having berberine). However again one size may not fit all, and you would have to try them out and just see if they agree with you or not. Please let us know if you try them. You don't want to take them continuously however not matter what since these last two herbs also act as antimicrobials much like golden seal. You would need to repopulate your gut with good flora at the very least. Some say they are very mild. However others react to them--like a good friend of mine does. Certainly they are bitter, though not as bad as things like wormwood! They do get the digestion going, that is for certain. But even with the best herbs, I think it is wise to go off them after 10 days if not less to give your body a rest from them--as well as to be certain they agree with you.

When you go off them, if you still need something to get your digestion going, I think maybe the occasional bit of lime or lemon could help...Or maybe home made apple cider vinegar (i.e., made without the peel using golden delicious apples) ?? Or fermented cabbage?? Any other suggestions, Caroline??

I was also just discovering by way of your cod liver oil vitamin D discussion, that K1 and K2 help make sure kidney stones are less likely to happen by making it so the calcium you digest goes to the right places rather than form kidney stones. Natto is mentioned more than once as the best source of K2. Its interesting since natto also gets rid of excess fibrin in the body. I use nattokinase (derived from natto) also to avoid blood clots and get rid of scar tissue. Yet the K2 in natto also helps ones blood to clot if needed. Seems a little confusing. It must be a balancing agent?? More than likely the straight (nasty smelling) natto has more diverse properties than the nattokinase derived from it?? At any rate, you might want to look into the K2 and Natto since it may help you avoid having more kidney stones. Apparently the Japanese have ways of making the natto more tasty--something to investigate?? Certainly it is low in salicylates.

With kidney stones, you likely need to go low on the oxalates. So the yellow dock is probably out for you too . Plus parsley should be used in moderation. Both are high in oxalates.

Balance and moderation I think is key in all things, especially health, as well as noticing and respecting our own special peculiarities. We are all discovering the shape of things we know a bit of but not really enough of. Modern medicine and herbology etc. still have a long ways to go...

The cool thing here though is that it usually is possible to intervene at least part of the time and be proactive about creating better nerve health as we improve our overall health since all our functions are interconnected.

Link to comment
Share on other sites
AVR1962 Collaborator

Thanks Bea for that info. How can you tell when your liver is clogged? I have heard this mentioned before. I did the liver cleanse as I am aware how so many toxins can pollute the liver, things like prescript drugs, stress, injected meats, fruits and veggies w/pesticides. Eating those for years I could not tell that my liver was suffering. My energy was going away and at first it was believed that my metabolism was slowing because of the toxins in the liver however, after the liver cleanse I can't say my energy improved. Can't say that I really feel differently than I did a year ago with the ecpetion of going gluten-free so I am just really curious what a congested or clogged liver would indicate, or how one would know?

Link to comment
Share on other sites
YoloGx Rookie

Thanks Bea for that info. How can you tell when your liver is clogged? I have heard this mentioned before. I did the liver cleanse as I am aware how so many toxins can pollute the liver, things like prescript drugs, stress, injected meats, fruits and veggies w/pesticides. Eating those for years I could not tell that my liver was suffering. My energy was going away and at first it was believed that my metabolism was slowing because of the toxins in the liver however, after the liver cleanse I can't say my energy improved. Can't say that I really feel differently than I did a year ago with the ecpetion of going gluten-free so I am just really curious what a congested or clogged liver would indicate, or how one would know?

My gall bladder acted up. At first I just thought it was a pulled muscle. However it did not go away and exercise seemed to actually help it. It got so bad one day I was having pain just riding in a car going over bumps. Laughing was the worst. So I looked it up and was shocked it was the gall bladder likely clogged up. I knew it wasn't my kidneys since it was in front on the right side underneath my lower right rib in line with the nipple above. I was also starting to feel a little "liverish"--nasty tempered and hot in the head that day I rode over the bumps. Rather than rush to see a doctor (I have developed a rather deep distrust for doctors unfortunately given all my bad experiences with them), I decided to try out my old trusty herbs first just to see if they would help. Thus my experiment. After which I promised myself I 'd go to the hospital if it didn't work out. However it did work amazingly despite my salicylate sensitivity which as you know generally advises staying off herbs.

I am still on a mostly vegetarian diet cleaning out. Its been almost a month. I tolerate some fish but mostly eat beans at this stage of the game as well as oodles of veggies and peeled ripe golden delicious apples and pears and some lemons and limes and plain yogurt. It takes time to clean out this way, however I figure I have the time to do it. I don't want my gall bladder out since it actually does perform an important function releasing bile which helps with digestion and intestinal peristalsis. It often creates more problems than it solves to remove it. Removing the gall bladder does not stop the liver from producing more stones. With celiac and salicylate sensitivity I figure I have problems enough as it is. And fortunately it appears to be unnecessary to remove my gall bladder since the pain is now long gone.

The congestion is actually from cholesterol forming balls in the liver and gall bladder. When it gets dangerous is if it blocks the bile ducts instead of just passing through one. The trick is to dissolve the cholesterol as well as reduce one's cholesterol load. Some do a liver flush. I did not feel ready to do that yet (if ever?? I am still nutting that one out). The so called stones also form around microbes and toxins as well as sometimes calcium or other minerals.

When I go back to eating meat, I plan to not eat beef or pork or butter any more. I avoided them for most of my adult life but went on them this last year. Chicken seems safest for me with some fish. Now that I can also eat legumes again I will be really happy when I can add in some chicken. Ironically I was eating the fatty foods to help feed my nerves, since five years ago the myelin sheath on my nerves was discovered to be down to 50%. I used to eat a lot of coconut oil and olive oil, but don't any more due to their both being high in salicylates. I think I will eat more eggs when I can, but not as many as I was due to their high cholesterol content as well as my sometimes difficulty digesting them.

I am also thinking of starting to make fermented cabbage. Just yesterday I made no fat yogurt. Its really easy. These two I think are great for the gut and help against a variety of conditions, including great for the nerves (those beasties). This is now always a concern of mine given how trashed my nervous system became.

I feel fortunate that I got pro active years ago and at least mostly was off gluten since 1996. It could have been worse. Of course the AMA and alternative doctors did not help me even though I told them what was happening to me (shaking, difficulty standing, not being able to think of the right word, soft teeth and nails etc. etc.)--and that by reading the Merck Manual I thought I had celiac.

I did get better thanks to my own efforts. However I just didn't know I needed to avoid all trace gluten to really get better. The concept of trace gluten or cross contamination had not even been introduced as far as I knew until my eldest sister took the ball and investigated the celiac for herself given her intractible fibromyalgia. She then alerted me to the real possibility I needed to go off trace gluten in the fall of 2007.

Honestly the fact I was constantly detoxing with herbs off and on has saved my life more than once. And now they are doing it again.

It makes me feel safer that I can take the dandelion and marshmallow root since they are both excellent for the kidneys, both soothing and detoxing. I have not gotten kidneys stones, however I have damaged kidneys no doubt due to inflammation caused by exposure to gliadin from the wheat family--as well as the high salicylates. I seem to get inflammation first and infection after. I was getting progressive scarring of my kidneys in my mid twenties. Herbs saved me from an otherwise likely untimely death.

I have used things like uva ursi as well as the dandelion and marshmallow root off and on for years to stave off possible infection in my kidneys when they have gotten inflamed. I wonder now however if the uva ursi is safe for me due to the whole salicylate issue. I will try it sometime when I feel a bit better. With my ears reacting as they do, they seem to be a litmus test on whether or not something is high or low in salicylates.

I will again reiterate, I think taking nattokinase daily has helped my kidneys reduce their scar tissue, as well as the damaged villi in my intestines. Its interesting that the straight natto is also very good at reducing the likelihood of kidney stones. Taking vitamin K-2 does the same I hear however. Might be worth investigating, eh?

Link to comment
Share on other sites
Elizabeth5220 Apprentice

I'm following this thread with...hope...

In the past few months, I've noticed increasing pain in my feet--like I've been standing on them for hours--and I've attributed it to neuropathy--docs would call it ideopathic! Ha! But I'm beginning to think it was related to g luten.

I've been gluten-free for two weeks now...hoping...

Link to comment
Share on other sites
CR5442 Contributor

Hmmm, how to describe a congested liver... Well there are a number of feelings you can experience. Like Bea the upper right epigastric discomfort or even pain, with some pain/discomfort radiating to the right scapula, underneath the right shoulder blade. You could feel more full or distended on the right hand side after eating and for longer than is comfortable. Usually this would resolve if you sat down or put your feet up. Otherwise there are, like Bea says, emotional heat signs that would appear. So you might be more emotional - either upset or angry - than usual. This would be accompanied with heat in the body... possibly sweating. Anger is a classical liver sign, as is excess upset/crying. (PMT is possibly mostly a liver condition...).

Any cholagogue or choleretic herb will help with a congested liver. As Bea says you have to find what is right for you. I knew that Dandelion didn't work for me as it made me too dry (dry skin, dry mouth etc), but the combination of herbs I'm on works really well for my endocrine/hormonal imbalances (excess oestrogen), excessive fatigue, and for the liver/gallbladder and overall digestion. The hormone herb is Dong Quai root: there are others like St John's Wort, Agnus Castus Vitex, Black Cohosh. The digestive herbs are Rosemary (works on clearing the mind too), Borage,Oregon Grape Root (and dandelion and the other herbs Bea mentions). There are about 70-80 herbs in all that have an action on the liver/gallbladder... so lots to choose from! The endocrine herbs are Schizandra chinesis and Siberian Ginseng. The other herb is Burdock... this is overall a great herb for the whole body... skin, urogenital system, toxicity, lymph, liver etc. My mix has 7 herbs. They work the mix out as a percentage of 100mls. So you for example would have 10% of one herb and 15% of others until you have 100mls... then you would take 5mls 3xday of the total mix. This is something a qualified herbalist would do for you.

The thing I would say is that individually most herbs do some things but not others and you really need a well thought out combination to start your systems working together. I can't really advise on which ones to take and how long for ... but as Bea says it is quite easy to use fresh herbs and make teas/tinctures up yourself. I would say to take teas first to see if a combination works for you... then the tincture for when you are sure you have got the right mix. You mentioned AVR that you have a lot of inflammation... this could well be down to the liver not being able to decongest the blood efficiently and quickly enough. You might find that addressing liver function would help all of this. You might try starting with say one drying herb... either Dandelion or Rosemary and then adding say a mild balancing herb and another less drying digestive herb like milk thistle and go from there.

Bea, do you have any suggestions as i know you have much much more experience with making these herbs up than I do - I'm a newbie to the craft as it were!!

Link to comment
Share on other sites
CR5442 Contributor

Bea, I'm grateful to say the itching is completely gone today!! So probably a combination of hormones getting a bit backed up in the liver and the full moon! I put my feet up after lunch and could actually hear and feel the bile making its way out!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CR5442 Contributor

Just realised forgot to say something about helping the digestive juices flow. From experience I did take cider apple vinegar with mother and a number of other things like aloe, but whilst they helped me go to the loo my last acupuncture session showed that it had no cleansing effect on the liver whatsoever, so I was as clogged up there as ever. Personally Rosemary is the one herb I've found that really works very quickly in helping the digestion. Most of these herbs also have a lot of vitamins and minerals so are extremely nutritious from that respect. Get the bile flowing and the rest will follow - a little pun there! Also, the sleep benefits greatly from a clean liver. Waking from 1/2 to 4 in the morning is a sign that your liver needs some help usually.

Link to comment
Share on other sites
AVR1962 Collaborator

WOW! Very informative and interesting, thank for the reply. I do have problems with inflammation. Maybe I should try some of this myself.

Link to comment
Share on other sites
quincy Contributor

I also have osteopenia, was taking a great deal of vitD but have recently been able to decrease. Are you getting a low acidic diet to regain growth in the bones? Read about it if you have not heard of it. Also, if your doc is recommending various prscripts to protect the bones be very wary and read on them as well. What happens with some, perhaps not I, is they will put a protective barrier around the bone to preserve what is there but it will not allow for new nutrients to penetrate the bone. When I was tolod this I refused any meds and I have been on a low acidic diet now for months in hopes of regaining.

no I have not heard a specific low acidic diet. I had a comprehensive nutritional evaluation done and my acidity/ph balance was on target, but not sure about low acidic foods.

I mostly eat protein, veggies, and some fruit, mostly melon, red grapes once in awhile, or pineapple for the bromelain content.

Link to comment
Share on other sites
YoloGx Rookie

Hmmm, how to describe a congested liver... Well there are a number of feelings you can experience. Like Bea the upper right epigastric discomfort or even pain, with some pain/discomfort radiating to the right scapula, underneath the right shoulder blade. You could feel more full or distended on the right hand side after eating and for longer than is comfortable. Usually this would resolve if you sat down or put your feet up. Otherwise there are, like Bea says, emotional heat signs that would appear. So you might be more emotional - either upset or angry - than usual. This would be accompanied with heat in the body... possibly sweating. Anger is a classical liver sign, as is excess upset/crying. (PMT is possibly mostly a liver condition...).

Any cholagogue or choleretic herb will help with a congested liver. As Bea says you have to find what is right for you. I knew that Dandelion didn't work for me as it made me too dry (dry skin, dry mouth etc), but the combination of herbs I'm on works really well for my endocrine/hormonal imbalances (excess oestrogen), excessive fatigue, and for the liver/gallbladder and overall digestion. The hormone herb is Dong Quai root: there are others like St John's Wort, Agnus Castus Vitex, Black Cohosh. The digestive herbs are Rosemary (works on clearing the mind too), Borage,Oregon Grape Root (and dandelion and the other herbs Bea mentions). There are about 70-80 herbs in all that have an action on the liver/gallbladder... so lots to choose from! The endocrine herbs are Schizandra chinesis and Siberian Ginseng. The other herb is Burdock... this is overall a great herb for the whole body... skin, urogenital system, toxicity, lymph, liver etc. My mix has 7 herbs. They work the mix out as a percentage of 100mls. So you for example would have 10% of one herb and 15% of others until you have 100mls... then you would take 5mls 3xday of the total mix. This is something a qualified herbalist would do for you.

The thing I would say is that individually most herbs do some things but not others and you really need a well thought out combination to start your systems working together. I can't really advise on which ones to take and how long for ... but as Bea says it is quite easy to use fresh herbs and make teas/tinctures up yourself. I would say to take teas first to see if a combination works for you... then the tincture for when you are sure you have got the right mix. You mentioned AVR that you have a lot of inflammation... this could well be down to the liver not being able to decongest the blood efficiently and quickly enough. You might find that addressing liver function would help all of this. You might try starting with say one drying herb... either Dandelion or Rosemary and then adding say a mild balancing herb and another less drying digestive herb like milk thistle and go from there.

Bea, do you have any suggestions as i know you have much much more experience with making these herbs up than I do - I'm a newbie to the craft as it were!!

Thanks Caroline for your informative reply!

Just want to note a couple of things. Tinctures are usually not safe for people with celiac or severe gluten intolerance. Sometimes they make them with corn alcohol. But corn is not always well tolerated. Especially not by me. The rest they usually make with grain alcohol that usually has gluten in it somewhere down the line. They also make tinctures with glycerin. I don't trust them since I don't know if they practice safe enough conditions to make sure there is no CC. Ditto with the tablets. Capsules of powdered herbs seem to be more trustworthy, but more expensive than the raw herbs. Thus I almost always use the raw herbs that I cook up myself instead, though I have used the caps from time to time for ease of use.

Generally when I boil up a root, I boil the whole cut up root on a low boil for 30 minutes. The powdered form takes less boiling and occasionally is OK just with hot water poured over them, and let to cool down a bit, much like you do with leaves. I often re-use my herbal concoctions. I put them into a stainless steel pot on the stove and boil them up with plenty of water. Generally 1 to 2 tablespoons per two quarts of water. Then after I have used some, I often add in more water. I keep doing this until the mixture comes out too watery and thin. I then throw out the debris into the compost. Initially when the brew is at its strongest I thin it half and half with hot boiled water in my cup. This keeps me from overdoing the herbal dose. Lately I go more for the 1 tablespoon per two quarts of water. This is way watered down usually, however these days I am thinking less is more. Especially if I am going to be taking herbs for a while.

I personally think that by brewing my herbs they are more effective than if taken in a pill form. The smells and the heat seem to have some sort of immediate healing action. Also the self care seems to be a kind of meditation that is helpful.

The herbs you like Caroline are great for those who do not have salicylate sensitivity--esp. the dong quai and vitex for balancing various female hormonal conditions. For myself however I don't think I will be using rosemary, borage, vitex, dong quai, St. John's wort etc. any time soon--though I used to from time to time thinking they should work. Thing is they never worked well for me. I could not figure out why. Now I know--salicylates. But for most everyone else they are wonderful. So I am glad they are helping you out!

These days I am investigating homeopathics in hopes they can help out just as well as the herbs, if not better in some cases. Certainly the headache and sleep remedies work far better for me than the herbs ever did. I am just a lot more ignorant about homeopathics since I have only started using them this last year. Being off the mint family and caffeine as well as salicylates in general seems to have helped make them work for me whereas in the past they never did.

Nevertheless, in a crisis as with this situation with my liver/gall bladder I turned back to what I knew. There may be homeopathics however that would do just as well. I just don't know about them yet. When I have a bit more cash I plan to see a homeopath sometime just to see if he/she can help. Meanwhile I have been studying them a bit on my own--as is my nature.

Link to comment
Share on other sites
YoloGx Rookie

no I have not heard a specific low acidic diet. I had a comprehensive nutritional evaluation done and my acidity/ph balance was on target, but not sure about low acidic foods.

I mostly eat protein, veggies, and some fruit, mostly melon, red grapes once in awhile, or pineapple for the bromelain content.

Just curious, what kind of protein?? Protein powders often contain gluten, even if just CC'd. The "natural flavors" are really suspect. Also the plain soy can be dangerous if taken in excess. Too much estrogen plus it messes with cell proliferation.

Link to comment
Share on other sites
YoloGx Rookie

Bea, I'm grateful to say the itching is completely gone today!! So probably a combination of hormones getting a bit backed up in the liver and the full moon! I put my feet up after lunch and could actually hear and feel the bile making its way out!

Awesome Caroline! Just be careful to rotate the herbs however--if not just go off them for a bit. I speak from what I have read as well as experience. Like you say there are so many of them that do similar things, it shouldn't be hard for you to do.

I love the image of the full moon, the feet up and the bile making its way out by the way!!

Link to comment
Share on other sites
YoloGx Rookie

I'm following this thread with...hope...

In the past few months, I've noticed increasing pain in my feet--like I've been standing on them for hours--and I've attributed it to neuropathy--docs would call it ideopathic! Ha! But I'm beginning to think it was related to g luten.

I've been gluten-free for two weeks now...hoping...

Welcome to the board Elizabeth!

I cross my fingers for you too! My thinking is that going off the gluten for most anyone actually can help. Thus the success of diets like the Paleo or Cave Man Diet. Its helped people with Parkinsons, MS as well as many other conditions like candida overgrowth etc.

By the way, there is a new book out called Wheat Belly that indicates going off gluten helps one get rid of a lot of conditions even for folks who do not have celiac. Another good book is called Dangerous Grains. Might be worth looking into I would say.

For us with an auto immune condition, we need to stay off all trace gluten, even getting rid of old cutting boards, toasters and the like. And putting the oven and iron pots and pans in the self cleaning cycle for an hour at 600 degrees F. Its best not to use mixes of things, even if they claim to be gluten free at first. Best to use raw foods you cook up yourself for the best result. Also be wary of lipstick, lip balm and other make up, lotions, soaps, detergents, shampoos, cleaners, dog and cat food. They actually have grain free cat food that is a lot safer for your animals anyway.

Good luck!

Link to comment
Share on other sites
quincy Contributor

Just curious, what kind of protein?? Protein powders often contain gluten, even if just CC'd. The "natural flavors" are really suspect. Also the plain soy can be dangerous if taken in excess. Too much estrogen plus it messes with cell proliferation.

mostly chicken, salmon, nuts and greek yogurt. I also sprinkle milled Chia seeds on my yogurt. I do use a protein powder occasionally - it's rice protein powder. I will check the container to see if its CGF, though I don't think it is. I don't drink it that often.

are there any protein powders that are certified gluten free?

Link to comment
Share on other sites
AVR1962 Collaborator

I'm following this thread with...hope...

In the past few months, I've noticed increasing pain in my feet--like I've been standing on them for hours--and I've attributed it to neuropathy--docs would call it ideopathic! Ha! But I'm beginning to think it was related to g luten.

I've been gluten-free for two weeks now...hoping...

I really hope you have a good doc. I finally had to figure it all out for myself, reading and research. Are your feet burning? Are you having any pins and needles feeling in the feet? Do you ahve any problems with the sciatic nerve? Burning and pins & needles are definately something that can be attributed to neuropathy. I put another post under "Coping" named Nutrients for Neuropathy. The neuropathy will not go away on its own, it will only get more painful and harder to deal with.

The reason I ask about the sciatic nerve is the nerve also runs into the foot and can caus alot of pain as well. I am currently seeing a doc to try and figure out what this other pain in my foot is. Was given pain killers which helped some but I ended up having a reaction to them. Is your foot swollen at all? Let us know what the doc decides, or what you end up doing.

Link to comment
Share on other sites
CR5442 Contributor

Thanks Caroline for your informative reply!

Just want to note a couple of things. Tinctures are usually not safe for people with celiac or severe gluten intolerance. Sometimes they make them with corn alcohol. But corn is not always well tolerated. Especially not by me. The rest they usually make with grain alcohol that usually has gluten in it somewhere down the line. They also make tinctures with glycerin. I don't trust them since I don't know if they practice safe enough conditions to make sure there is no CC. Ditto with the tablets. Capsules of powdered herbs seem to be more trustworthy, but more expensive than the raw herbs. Thus I almost always use the raw herbs that I cook up myself instead, though I have used the caps from time to time for ease of use.

Generally when I boil up a root, I boil the whole cut up root on a low boil for 30 minutes. The powdered form takes less boiling and occasionally is OK just with hot water poured over them, and let to cool down a bit, much like you do with leaves. I often re-use my herbal concoctions. I put them into a stainless steel pot on the stove and boil them up with plenty of water. Generally 1 to 2 tablespoons per two quarts of water. Then after I have used some, I often add in more water. I keep doing this until the mixture comes out too watery and thin. I then throw out the debris into the compost. Initially when the brew is at its strongest I thin it half and half with hot boiled water in my cup. This keeps me from overdoing the herbal dose. Lately I go more for the 1 tablespoon per two quarts of water. This is way watered down usually, however these days I am thinking less is more. Especially if I am going to be taking herbs for a while.

I personally think that by brewing my herbs they are more effective than if taken in a pill form. The smells and the heat seem to have some sort of immediate healing action. Also the self care seems to be a kind of meditation that is helpful.

The herbs you like Caroline are great for those who do not have salicylate sensitivity--esp. the dong quai and vitex for balancing various female hormonal conditions. For myself however I don't think I will be using rosemary, borage, vitex, dong quai, St. John's wort etc. any time soon--though I used to from time to time thinking they should work. Thing is they never worked well for me. I could not figure out why. Now I know--salicylates. But for most everyone else they are wonderful. So I am glad they are helping you out!

These days I am investigating homeopathics in hopes they can help out just as well as the herbs, if not better in some cases. Certainly the headache and sleep remedies work far better for me than the herbs ever did. I am just a lot more ignorant about homeopathics since I have only started using them this last year. Being off the mint family and caffeine as well as salicylates in general seems to have helped make them work for me whereas in the past they never did.

Nevertheless, in a crisis as with this situation with my liver/gall bladder I turned back to what I knew. There may be homeopathics however that would do just as well. I just don't know about them yet. When I have a bit more cash I plan to see a homeopath sometime just to see if he/she can help. Meanwhile I have been studying them a bit on my own--as is my nature.

Thanks for this Bea. Really useful. Re. the herbs, I was only saying what I'm on for reference. You are right about the salicylates however. Only I don't seem to have a problem with them. Also. re. the alcohol, here they use non grain alcohol for tinctures and production is now tightly regulated, i.e. you can't produce until you get a very expensive testing certificate on each tincture made to ensure purity, compliance etc. So we don't have as many of these variation problems as you might have in the states. Re. the rotation, I do agree on this, however the levels of herb in my mix are quite conservative... They keep me on this mix for another 5 weeks, then they start to tweak. I'm hoping to add to my learning with the new set of herbs they prescribe. My head of school is supervising my appointments and I trust him implicitly. I suppose if there is a highly regulated herb company in the US where they state clearly that their production methods are clinically clean, and they do not use grain alcohol, one might be able to use their products?? It is all a bit of a gamble I know because up until our regulation in the UK you could never be 100% percent sure. Now it is much clearer and safer.

I do also agree on the herbal teas/decoctions/infusions. I much prefer to use this method as in production of tincture or drying you can loose a lot of the herbal properties. Fresh herb is always best! Tincture though is easier for someone who doesn't have all the herb to hand in the garden. Also really important to get organic herbs if you have to buy in. Glycerine is a very interesting one... It is quite revolting on its own... we had to taste it in class! The other one is honey. If you can tolerate honey it can be used to make a base to preserve the herbs. You chop or bruise the herbs, place in a clean sterilized jar, cover with honey and stir well, label, then leave to macerate for at least 4 weeks but apparently preferably for months (the herbal tutor, McIntyre). Store in cool or refrigerator.

The other thing one could do is dry out and grind the herbs to powder and put in to capsules. Need to make sure there is zero moisture in the powder though... There is also a recipe for syrup if anyone wants to know... that will also keep longer.

Link to comment
Share on other sites
YoloGx Rookie

Thanks for this Bea. Really useful. Re. the herbs, I was only saying what I'm on for reference. You are right about the salicylates however. Only I don't seem to have a problem with them. Also. re. the alcohol, here they use non grain alcohol for tinctures and production is now tightly regulated, i.e. you can't produce until you get a very expensive testing certificate on each tincture made to ensure purity, compliance etc. So we don't have as many of these variation problems as you might have in the states. Re. the rotation, I do agree on this, however the levels of herb in my mix are quite conservative... They keep me on this mix for another 5 weeks, then they start to tweak. I'm hoping to add to my learning with the new set of herbs they prescribe. My head of school is supervising my appointments and I trust him implicitly. I suppose if there is a highly regulated herb company in the US where they state clearly that their production methods are clinically clean, and they do not use grain alcohol, one might be able to use their products?? It is all a bit of a gamble I know because up until our regulation in the UK you could never be 100% percent sure. Now it is much clearer and safer.

I do also agree on the herbal teas/decoctions/infusions. I much prefer to use this method as in production of tincture or drying you can loose a lot of the herbal properties. Fresh herb is always best! Tincture though is easier for someone who doesn't have all the herb to hand in the garden. Also really important to get organic herbs if you have to buy in. Glycerine is a very interesting one... It is quite revolting on its own... we had to taste it in class! The other one is honey. If you can tolerate honey it can be used to make a base to preserve the herbs. You chop or bruise the herbs, place in a clean sterilized jar, cover with honey and stir well, label, then leave to macerate for at least 4 weeks but apparently preferably for months (the herbal tutor, McIntyre). Store in cool or refrigerator.

The other thing one could do is dry out and grind the herbs to powder and put in to capsules. Need to make sure there is zero moisture in the powder though... There is also a recipe for syrup if anyone wants to know... that will also keep longer.

Hi Caroline,

Thanks for sharing about the dif. between England and the US concerning the safety of herbs. I do wish we had some laws here regulating their production. Instead they keep trying to get them declared drugs so the pharmas can take over....grumble, grumble! Fortunately I get my herbs from a local store that guarantees that the raw herbs are gluten free however.

Certainly the range of herbs I can now take is greatly reduced from the past due to the salicylate problem I have.

I could try out some of your alternative ideas on tinctures sometime. Maybe substitute maple syrup for the honey since the honey is, you guessed it, high in salicylates, whereas maple syrup is just fine. Or maybe just spring for some glycerine to make my own tinctures...

Link to comment
Share on other sites
YoloGx Rookie

Hi Caroline,

Thanks for sharing about the dif. between England and the US concerning the safety of herbs. I do wish we had some laws here regulating their production. Instead they keep trying to get them declared drugs so the pharmas can take over....grumble, grumble! Fortunately I get my herbs from a local store that guarantees that the raw herbs are gluten free however.

Certainly the range of herbs I can now take is greatly reduced from the past due to the salicylate problem I have.

I could try out some of your alternative ideas on tinctures sometime. Maybe substitute maple syrup for the honey since the honey is, you guessed it, high in salicylates, whereas maple syrup is just fine. Or maybe just spring for some glycerine to make my own tinctures...

Meanwhile I am suddenly realizing that I feel so much clearer, less dizzy, more focused etc. in the morning when I get up. I think maybe just maybe my life is starting to turn around. The few herbs that I can now take have been helping amazingly. I am so greatfull to the universe!

Link to comment
Share on other sites
aeraen Apprentice

Thank you, thank you, thank you for that info.

Just about all of the symptoms listed under Motor symptoms apply to me. I climb stairs with my arms as much as with my legs, and I always wondered about it as I am in pretty good physical shape for an overweight old lady ;) I mean, I walk about 3 miles a day weekdays and up to 8 miles on a weekend. So I always wondered why my legs just didn't like stairs.

Unfortunately, I have been gluten-free for almost 3 years, so it doesn't look like its getting any better. Now, if my legs had that hair loss thing going on, I might have felt that I was getting a worthwhile trade off... :D

Link to comment
Share on other sites
  • 2 weeks later...
AVR1962 Collaborator

Thank you, thank you, thank you for that info.

Just about all of the symptoms listed under Motor symptoms apply to me. I climb stairs with my arms as much as with my legs, and I always wondered about it as I am in pretty good physical shape for an overweight old lady ;) I mean, I walk about 3 miles a day weekdays and up to 8 miles on a weekend. So I always wondered why my legs just didn't like stairs.

Unfortunately, I have been gluten-free for almost 3 years, so it doesn't look like its getting any better. Now, if my legs had that hair loss thing going on, I might have felt that I was getting a worthwhile trade off... :D

Good to see people being able to find humor with their situations. I am glad the info helped! Do you take supplements to help with the side-effects?

Link to comment
Share on other sites
  • 2 weeks later...
Marilyn R Community Regular

I like to excercise, my neurologist said to use it or lose it, and that exercise helps everything. Stairs are still hard but I use them (down is tougher than up for me), but Mom couldn't walk straight down a sidewalk at my age, so I'm not complaining.

It helped me so much to adopt a little dog who makes me take her for a walk! I honestly didn't like her at first but I love her to bitts now, and we go for a 9-12 block walk at least twice a day.

I know it isn't posible for everyone to adopt a dog because of living situations. But if you can, if really helps. If you can't, I'd really by goodness urge you to take those walks, because they really help. It is nice to see the beauty of the sun rising and the morning sky, I missed that for a few years when I wasn't ... myself.

Even if you do a few squats when you're brushing your teeth, it will make you brush your teeth longer, so it's all good! l[

Link to comment
Share on other sites
AVR1962 Collaborator

I like to excercise, my neurologist said to use it or lose it, and that exercise helps everything. Stairs are still hard but I use them (down is tougher than up for me), but Mom couldn't walk straight down a sidewalk at my age, so I'm not complaining.

It helped me so much to adopt a little dog who makes me take her for a walk! I honestly didn't like her at first but I love her to bitts now, and we go for a 9-12 block walk at least twice a day.

I know it isn't posible for everyone to adopt a dog because of living situations. But if you can, if really helps. If you can't, I'd really by goodness urge you to take those walks, because they really help. It is nice to see the beauty of the sun rising and the morning sky, I missed that for a few years when I wasn't ... myself.

Even if you do a few squats when you're brushing your teeth, it will make you brush your teeth longer, so it's all good! l[

Marilyn, that is great! Pets are wonderful, they are comforting and give a reason to keep moving at times. Great tidbit on the exercise. Not only is it good for the body but it is actually good for the brain as well. Exercise helps make proper circuits in the brain.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    2. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    3. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

    4. - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

    5. - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...