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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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AVR1962

Nueropathy

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Curious here for those who have had nueropathy issues as to what you have tried that helped? Did lab tests show vit deficiencies? Are you supplementing without knowing whether you were deficient, and is it working? Did you see a nuerologist and have tests ran? Any other reasons why you could have nueropathy.....back problems, etc?

My doc does not want me taking any supplements, says they can be more harmful than good. All well and fine but a week after I stopped taking my B complex my nueropathy issues came back. He feels it is poor circulation issues, says I am not deficient but as far as I recall my labs were done while taking supplements. The pins and needles pain got so bad again I had to start taking L-carnitine again, I just could not take it. I am now taking half of the recommended dose of the B complex I was taking before and it has kept the numbness tolerable. I am seeing a new doc this week but wanted to hear from others who have been down this road.

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Sublingual B12 was very helpful for my neuropathies even before my celiac diagnosis. If the vitamins you were taking helped then personally I would start taking them again.

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Thanks Raven! There is so much I don't understand and if anyone has the answers please feel free to chime in here. I read a book on nueropathy and the various types, the various supplements for it. When I followed the book I felt real good but I guess I question myself because I had no doc to tell me this was my issue so all of this has been like a stab in the dark sort of thing.

If I go back on the full amount of nerve formula B complex I was using before is that going to mess up any tests? That might sound kind of stupid but I have an appt this week to get my back looked at. I have had trouble with my low back for at least 6 years and have wondered if it was possible that my back could be causing the issues.

One thing I know if sure, until I did an herbal liver cleanse Nov 2010-Feb 2011, I had no nueropathy issues. It was after the cleanse these issues began.

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At one point post celiac diagnosis I was supplementing with B, D, Calcium, Malic Acid and specific amino acids for over a year...I had great improvement for about 4-6 months...then became much worse until I was bedridden.

In August I eliminated all possible food intolerance and have been improving steadily and have far more good days then bad. Today happens to be a rotten day...fingers, hands, wrists and fee tingly/numb along with whole body fatigue, pain, and extremely irritable.

I had discontinued the amino supplementation when it stopped working and have since stopped the other supplements as all of my nutrients were within normal high range for the first time in my life after three months of elimination diet (these levels were checked last July and were all below normal as they had been most of my adult life -- even with supplementation my levels remained in the very low or below normal ranges -- I simply was not absorbing nutrients).

As far as going back on full amount of supplements...not sure...if you are already on half what you believe you should take..that would affect the serum levels so I'd guess you should take the full amount that helps you OR go all the way off - although I don't know how long the effects of the supplementation effect your labs.

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I'm a little concerned about your doctor's advice. B deficiency neuropathies are progressive and can be permanent. My mom has B12 deficiency neuropathy that has not reversed very well because she was deficient for so many years.

Also when I had carpal tunnel in my teens, my neurologist told me to start B-complex supplements. He did not test me for deficiency, just told me to get one with thiamine, B6, and B12. Between the B vitamins, and anti-inflammatory, and a splint we got it to go away. My understanding is that unless you mega-dose it's difficult to build up dangerous amounts of B vitamins. If your blood levels were good, you were not overdosing. (Note that some people on the board are mega-dosing B12, sometimes with troublesome results. 100mcg/day is plenty for most folks.)

That's terrible that the herbal cleanse messed you up. :( If you don't mind my asking, what did you take? B12 is stored in your liver, as are many other vitamins. I wonder if you managed to deplete your B12?

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I agree with Skylark. Unless you know your doctor is going to run blood tests measuring your vitamin levels this week, I'd go back onto the B vitamins that helped you out. B's don't tend to stay in the body longer than two days, if that, as I recollect. Its one reason so many here who have celiac or severe gluten intolerance need B vitamins since they are one of the things that one can no longer process very well once the intestinal villi have become flattened or scarred.

As I recall, part of the offending herbs you took involved licorice root, which, while a fairly mild herb for most, simply is not for everyone. It temporarily affects the hormones and can build up in one's system. Often it will temporarily raise blood pressure if taken longer than 10 days. It can mess with the adrenals and blood sugar as a result (also temporary). Certainly too it is very high in salicylates, and its likely the other detox herbs were too -- which may be part of your problem since historically it seems you have shown certain signs of being sensitive to the salicylates. It may in fact been the extra feather that toppled the apple cart wherein you became more sensitive to salicylates in general (assuming you did of course). If that happened, the effect of reacting to salicylates is often not so temporary.

Meanwhile good luck with resolving your back issues. I too am finding I have to do a whole series of yoga and stretching exercises each day as well as go for a walk so my nerves settle down enough at night so I can sleep due to the combined problems of having an old low back/hip injury as well as celiac and salicylate sensitivity. Its helping to do modified push ups and sit ups plus using small weights too. Diet of course is also key, as are taking a variety of supplements, a slew of minerals including mag. citrate as well as B complex, Vit. E mixed tocopherols, MSM etc.

Meanwhile, if you find you are oxalate sensitive (and/or sals too??), going off vitamin C may be imperative. And if so, you may also be experiencing what they call oxalate dumping. Especially if you have gone off other high oxalate foods. Have you? Are you?? All I can say is go slowww....and careful.

Meanwhile, meanwhile, good luck with your new doc.

Bea

PS--I will be having some new lab tests this week too to test for possible gut dysbiosis, parasites as well as a test to make sure my liver and kidneys are OK (well, OK enough anyway) before I do a heavy metal test and any possible attempt to remove some of them (of which I have been historically high). I am trying to figure out why I am so damn hyper sensitive to trace gluten--and if there is anything I can do to change it a bit so I am not quite so hyper reactive.

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I'm a little concerned about your doctor's advice. B deficiency neuropathies are progressive and can be permanent. My mom has B12 deficiency neuropathy that has not reversed very well because she was deficient for so many years.

Also when I had carpal tunnel in my teens, my neurologist told me to start B-complex supplements. He did not test me for deficiency, just told me to get one with thiamine, B6, and B12. Between the B vitamins, and anti-inflammatory, and a splint we got it to go away. My understanding is that unless you mega-dose it's difficult to build up dangerous amounts of B vitamins. If your blood levels were good, you were not overdosing. (Note that some people on the board are mega-dosing B12, sometimes with troublesome results. 100mcg/day is plenty for most folks.)

That's terrible that the herbal cleanse messed you up. :( If you don't mind my asking, what did you take? B12 is stored in your liver, as are many other vitamins. I wonder if you managed to deplete your B12?

Skylark thanks, I did not even think of the liver being depleted because of the cleanse but I bet you are dead on with that as I was not having these issues before I did the liver cleanse. The product was Elemis and it is recommended to take a different bottle of tabs (2 a day) for 3 months. I was told to drink plenty of water or crystals could for in the kidneys. I asked the lady if it was safe for my having my history with kidney stones. She seemed to think I would be much better after the cleanse. I started getting sick after the 2 bottles were complete but it took me two more weeks to suspect the cleanse. I ended up in ER. I looked up every ingredient in that cleanse and found the symptoms I was having as a reaction to the herbs. I think the quantity of herbns in the pills was too much for my body. Eventhough I was drinking 3 liters of water a day I ended up passing crystals, talk about painful.

I am going to start taking the full dose again recommended for this complex. I do worry about this not being reversable if I let it go. I have an appt this week with a German doc on the local economy and hoping he will have some insight.

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I agree with Skylark. Unless you know your doctor is going to run blood tests measuring your vitamin levels this week, I'd go back onto the B vitamins that helped you out. B's don't tend to stay in the body longer than two days, if that, as I recollect. Its one reason so many here who have celiac or severe gluten intolerance need B vitamins since they are one of the things that one can no longer process very well once the intestinal villi have become flattened or scarred.

As I recall, part of the offending herbs you took involved licorice root, which, while a fairly mild herb for most, simply is not for everyone. It temporarily affects the hormones and can build up in one's system. Often it will temporarily raise blood pressure if taken longer than 10 days. It can mess with the adrenals and blood sugar as a result (also temporary). Certainly too it is very high in salicylates, and its likely the other detox herbs were too -- which may be part of your problem since historically it seems you have shown certain signs of being sensitive to the salicylates. It may in fact been the extra feather that toppled the apple cart wherein you became more sensitive to salicylates in general (assuming you did of course). If that happened, the effect of reacting to salicylates is often not so temporary.

Meanwhile good luck with resolving your back issues. I too am finding I have to do a whole series of yoga and stretching exercises each day as well as go for a walk so my nerves settle down enough at night so I can sleep due to the combined problems of having an old low back/hip injury as well as celiac and salicylate sensitivity. Its helping to do modified push ups and sit ups plus using small weights too. Diet of course is also key, as are taking a variety of supplements, a slew of minerals including mag. citrate as well as B complex, Vit. E mixed tocopherols, MSM etc.

Meanwhile, if you find you are oxalate sensitive (and/or sals too??), going off vitamin C may be imperative. And if so, you may also be experiencing what they call oxalate dumping. Especially if you have gone off other high oxalate foods. Have you? Are you?? All I can say is go slowww....and careful.

Meanwhile, meanwhile, good luck with your new doc.

Bea

PS--I will be having some new lab tests this week too to test for possible gut dysbiosis, parasites as well as a test to make sure my liver and kidneys are OK (well, OK enough anyway) before I do a heavy metal test and any possible attempt to remove some of them (of which I have been historically high). I am trying to figure out why I am so damn hyper sensitive to trace gluten--and if there is anything I can do to change it a bit so I am not quite so hyper reactive.

Bea, I did take the high oxalates out of my diet and was awre of possible dumping so have been real careful not to take them all out completely at once and I think that is all going well actually. I don't know if you saw my update on my burning, itching scalp but doc I had an allergic reaction to an ingredient in a hairspray I used in Nov. Nothing I tried was working to resolve the itch. He gave me a topical steroid and it is improving. I did take an allergy test as I have gotten so tired of guessing and experimenting....hope to have those results back soon. And yes, I did read that about not taking vit C because of my stone issues. I am hooked up now with my calcium & magnesium citrate as well as biotin, and have started back on potassium.

Last night after doing yard work I was sitting watching TV and my left arm from my elbow down started feeling like my feet so I decided to go back to the full dosage of the B complex. This is nuts!

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I have neuropathy but it is caused by diabetes. I take Evening Primrose Oil, 2,000 mg each morning and night. I also take Alpha Lipoeic Acid. I'm not sure that works but some people find that it does.

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Bea, I did take the high oxalates out of my diet and was awre of possible dumping so have been real careful not to take them all out completely at once and I think that is all going well actually. I don't know if you saw my update on my burning, itching scalp but doc I had an allergic reaction to an ingredient in a hairspray I used in Nov. Nothing I tried was working to resolve the itch. He gave me a topical steroid and it is improving. I did take an allergy test as I have gotten so tired of guessing and experimenting....hope to have those results back soon. And yes, I did read that about not taking vit C because of my stone issues. I am hooked up now with my calcium & magnesium citrate as well as biotin, and have started back on potassium.

Last night after doing yard work I was sitting watching TV and my left arm from my elbow down started feeling like my feet so I decided to go back to the full dosage of the B complex. This is nuts!

Hi Annette,

I am glad you are being cautious about going off the oxylates and thus doing it s l o w l y.

I am encouraging my friend Graeme to do the same since his problems seem like they well could be due to oxalates. Its a bummer how antibiotics can destroy one's ability to process oxalates safely. I wonder if taking SOD's would help??

I don't think high oxalates are my problem, however one never knows. Certainly I have had enough antibiotics to kill a horse. Nevertheless, I intend to check out other stuff first. Still remembering however I do have a history of nephritis from way back.

Its interesting to learn that if one has calcium with or just before one's meal, it helps bind the oxalates so your body can then more easily get rid of them through the gut without harming your kidneys. It seems eating all that home made yogurt has likely helped me miss this potential problem too. Am off it right now due to waiting to do tests on my gut flora. Just 3 days and already I miss my yogurt! Not to speak of my whey inoculated home made sauerkraut. Another matter I know but it seems relevant somehow, it being a good source of fermented goodies I can actually handle--the sour dough however flopped. It seems I really am allergic to it.

Just wanted to also mention that when I upped my biotin levels, I found I had to go real slow on that too. What I did was put the pill's contents into a little piece of folded paper, and then just used 1/4 of it at a time initially, and then gradually worked to where I could handle 1/2 dose and then 3/4 and finally a full dose. I am up to using 1000 mcg a day. I understand many use much higher dose than that. I may eventually decided to do so too since it is a good anti candida, anti fungal remedy amongst other things. Am waiting to do my tests first and will talk to my naturopath about it afterwards. Meanwhile I have to wait another day at least since I discovered I shouldn't be using any enzymes at all for a couple of days before doing stool tests...I didn't realize til I read the literature. I was taking the nattokinase and pancreatic enzymes etc.

Things are starting to feel more positive for me. I hope it will feel that way for you soon too. Here in CA it feels like the beginning of Spring! despite all the craziness the world seems invested in these days, positive life energy finds a way to move on.

Bea

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Hi Annette,

I am glad you are being cautious about going off the oxylates and thus doing it s l o w l y.

I am encouraging my friend Graeme to do the same since his problems seem like they well could be due to oxalates. Its a bummer how antibiotics can destroy one's ability to process oxalates safely. I wonder if taking SOD's would help??

I don't think high oxalates are my problem, however one never knows. Certainly I have had enough antibiotics to kill a horse. Nevertheless, I intend to check out other stuff first. Still remembering however I do have a history of nephritis from way back.

Its interesting to learn that if one has calcium with or just before one's meal, it helps bind the oxalates so your body can then more easily get rid of them through the gut without harming your kidneys. It seems eating all that home made yogurt has likely helped me miss this potential problem too. Am off it right now due to waiting to do tests on my gut flora. Just 3 days and already I miss my yogurt! Not to speak of my whey inoculated home made sauerkraut. Another matter I know but it seems relevant somehow, it being a good source of fermented goodies I can actually handle--the sour dough however flopped. It seems I really am allergic to it.

Just wanted to also mention that when I upped my biotin levels, I found I had to go real slow on that too. What I did was put the pill's contents into a little piece of folded paper, and then just used 1/4 of it at a time initially, and then gradually worked to where I could handle 1/2 dose and then 3/4 and finally a full dose. I am up to using 1000 mcg a day. I understand many use much higher dose than that. I may eventually decided to do so too since it is a good anti candida, anti fungal remedy amongst other things. Am waiting to do my tests first and will talk to my naturopath about it afterwards. Meanwhile I have to wait another day at least since I discovered I shouldn't be using any enzymes at all for a couple of days before doing stool tests...I didn't realize til I read the literature. I was taking the nattokinase and pancreatic enzymes etc.

Things are starting to feel more positive for me. I hope it will feel that way for you soon too. Here in CA it feels like the beginning of Spring! despite all the craziness the world seems invested in these days, positive life energy finds a way to move on.

Bea

Bea, good that some things seem to be working for you too. I had to stop the nattokinase. Something was making my heart beat harder and at the time this had been my only change. I stopped taking it and my heart went back to normal. I am drinking a cup of nettle tea daily.

What problems were you having with the Biotin? I have not noticed any issues.

Here's the ingredients list for the herbal cleanse I took over a year ago. Everything I read about liver cleanses are very positive but I do agree with my doc that there more than likely was just too much herbs and my body reacted. However, I really feel I am now still recooping one year later. I have a nurse friends that said as bad as this stuff messed me up, I should feel lucky to be alive. And and definately am, it's just amazing to realize that something like this could be so harmful.

Here too it is feeling like spring!!!!! So ready!

Elemis liver cleansing products & ingredients:

Elemis Deep Drainage:

Ingredients

Raphanus Sativus (Black radish) Powder, Mentha Piperita (Peppermint) Leaf Powder, Stigmata Maydis (Cornsilk) Powder, Petroselinum Sativum (Parsley) Leaf Powder, Plantago Ovata (Plantain) Leaf Powder, Kelp (Finasco), Arctostaphylos Uva Ursi (Bearberry) Leaf Powder, Galium Algae (Cleavers) Powder, Laminaria (Kelp) Extract.

Take 2 capsules daily for one month.

Cal-Metab Plus:

Ingredients

Kelp (Finasco) Powder, Laminaria (Kelp) Extract, Plantago Ovata (Plantain) Leaf Powder.

Take 2 capsules with Deep Drainage for one month.

Elemis Silhouette:

Ingredients

Kelp (Finasco), Laminaria (Kelp) Extract, Centella Asiatica Extract, Aphanizomeneon flos-aquae (Blue green algae).

Take 2 capsules for one month, starting after Deep Drainage & Cal-Metab.

Elemis Vitality:

Ingredients

Spirulina Powder, Smilax Officinalis (Sarsaparilla) Root Powder, Eleutherococcus Senticosus (Siberian ginseng), Hydrocotyle (Gotu kola), Kelp (Finasco), Laminaria (Kelp) Extract.

Take 2 capsules for one month, starting after Silhouette.

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The right lawyer could probably get you some money. That stuff looks toxic with the bearberry and diuretics. Bearberry has to be taken with great caution and going onto it for a month with other kidney herbs seems like really bad advice. Are your BUN and creatinine the same as before the "cleanse" or have they risen?

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The right lawyer could probably get you some money. That stuff looks toxic with the bearberry and diuretics. Bearberry has to be taken with great caution and going onto it for a month with other kidney herbs seems like really bad advice. Are your BUN and creatinine the same as before the "cleanse" or have they risen?

Not sure what they were before the cleanse. However, I do know I had to have my creatinine levels checked before they could do an MRI of my brain and the were fine.

I did notify the company, and places I know of that sold the product I have posted my experience in their feedback. I did contact a company that does experimental testing and product reviews but found out they did not take general experiences, only didicated research experiments.

I have joked that I have a liver of a newborn but really I think that makes more sense than anything when you put 2 & 2 together. It tells me why I am so sensative to EVERYTHING, whereas I was not before the cleanse. So like a baby, it seems, my body has to get used to all these foods in our adult world and I think that is why I have had so much trouble this past year.

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I am really interested in neurological problems other coeliacs suffer from. I have tingly fingers and hands, burning pain legs and arms all the time and fatigue almost all the time and occassional muscle cramps up the back of my legs.

The only vit I am low in is vit d which I am having d3 drops to boost. I have been dx with fibromyalgia. I have all the tender points.

My pain started about 1 year AFTER I went gluten-free. Pain started when I was on an antidepressant called cymbalta (which is actually the treatment for fibro). I am off cymbalta cos it caused terrible neuro side affects (hallucinations, body jerks etc).

Just thought I would share my experience in case anyone else has had this strange experience.

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Bea, good that some things seem to be working for you too. I had to stop the nattokinase. Something was making my heart beat harder and at the time this had been my only change. I stopped taking it and my heart went back to normal. I am drinking a cup of nettle tea daily.

What problems were you having with the Biotin? I have not noticed any issues.

Here's the ingredients list for the herbal cleanse I took over a year ago. Everything I read about liver cleanses are very positive but I do agree with my doc that there more than likely was just too much herbs and my body reacted. However, I really feel I am now still recooping one year later. I have a nurse friends that said as bad as this stuff messed me up, I should feel lucky to be alive. And and definately am, it's just amazing to realize that something like this could be so harmful.

Here too it is feeling like spring!!!!! So ready!

Elemis liver cleansing products & ingredients:

Elemis Deep Drainage:

Ingredients

Raphanus Sativus (Black radish) Powder, Mentha Piperita (Peppermint) Leaf Powder, Stigmata Maydis (Cornsilk) Powder, Petroselinum Sativum (Parsley) Leaf Powder, Plantago Ovata (Plantain) Leaf Powder, Kelp (Finasco), Arctostaphylos Uva Ursi (Bearberry) Leaf Powder, Galium Algae (Cleavers) Powder, Laminaria (Kelp) Extract.

Take 2 capsules daily for one month.

Cal-Metab Plus:

Ingredients

Kelp (Finasco) Powder, Laminaria (Kelp) Extract, Plantago Ovata (Plantain) Leaf Powder.

Take 2 capsules with Deep Drainage for one month.

Elemis Silhouette:

Ingredients

Kelp (Finasco), Laminaria (Kelp) Extract, Centella Asiatica Extract, Aphanizomeneon flos-aquae (Blue green algae).

Take 2 capsules for one month, starting after Deep Drainage & Cal-Metab.

Elemis Vitality:

Ingredients

Spirulina Powder, Smilax Officinalis (Sarsaparilla) Root Powder, Eleutherococcus Senticosus (Siberian ginseng), Hydrocotyle (Gotu kola), Kelp (Finasco), Laminaria (Kelp) Extract.

Take 2 capsules for one month, starting after Silhouette.

Its true, the thing is with bearberry is that one should only use it for 2 weeks max. Using it longer can cause major problems in a few people like nausea for one and even collapse, like what happened to you. Otherwise if used properly it is considered pretty safe. And very effective if it is used wisely, i.e., without taking acidic substances like cranberry, or orange or lemon or even sauerkraut during the same day. It won't hurt you if you do these things, but it won't help either.

Other possible problem herbs for you given your tendency towards salicylate sensitivity, would have been the mint and parsley believe it or not. Radish, Kelp and Cleavers are all unfortunately high in salicylates too. However the company could well not have known you were tending towards th at condition since most of these substances are considered to be very safe by most of the world's populace. These herbs, including the bearberry, by the way are all kidney clearing, and not so much liver clearing. Just wanted to set that straight.

Cleavers are excellente for both the kidneys and the lymphatic system. However in my experience, one needs to go slow using it since it is extremely powerful. I used to use it, but not until I had used many other liver and kidney cleansing herbs first.

The ginseng and gotu kola IMHO are not appropriate for someone with an auto immune condition. Both are stimulants big time.

The sarsparilla is a good liver and kidney cleansing herb. However it also affects the estrogen hormones and as such is not for everyone.

Why they had you on such high doses of kelp I don't know. Were you low in iodine?? Were you diagnosed with adrenal exhaustion??

And why didn't they just have you use something simple and easily tolerated by most ike dandelion root which is good for both the kidneys and the liver? Plus there are many specific herbs that are good against kidney stones.

Too bad your herbalist wasn't paying more attention Caroline!

I too have had more than my share of inadequate doctors on various sides of the aisles. I had a doctor at the University of Oregon when I was in my early twenties that kept me on ampicillin after I had a full body rash from taking a double dose. The pharmacy had made the initial mistake, but his continuing me on it was even worse. After that I quickly became sensitive to most antibiotics, including sulpha drugs (which they over used next). No one bothered to ask why I had so many infections. I eventually had to drop out of graduate school due to a bad case of progressive nephritis.

As it turns out in the really long run, I had underlying celiac propelling the whole thing. My grandmother turned me on to the idea that diet could be affecting me. With that I began to get healthier--since right off the bat I stopped eating citrus fruit at her suggestion, which really helped me. That advise plus some very good advise from a wonderful book by David Hoffman called The Holistic Herbal saved my life more than once. I spent years figuring out what I could safely eat and it paid off. And now with the Internet and intervening years of more research, there is even more info out there available to those who do the research on herbs, diet and most everything else if you are persistent and know where to look.

Nevertheless, I also have had my bummer naturopaths, one in particular who called himself The Health Detective. He had me on several remedies that in retrospect had trace gluten in them. They were supposed to help me detox, instead they made me much worse. It may in fact be part of why the salicylate sensitivity became so bad.

I have never done very well just believing my doctors. More recently two 1/2 years ago I went into the Emergency Clinic at the local hospital after I was exhausted from working all summer on several rentals plus engineered the Memorial for my good poet friend and tenant who died that summer. My ears were hurting and grey flaking inside and out. I was afraid I had a bad ear infection and wanted it tested. But instead the doc gave me some kind of horse pill antibiotic that knocked everything out.

I ended up getting severe shooting diarrhea every half hour. Eventually it was watery and green. A friend who is an EMD said this is what happens to those who use that particular antibiotic--he knew the na me before I told him; and what do they suggest as an antidote--more antibiotics since otherwise it could kill you. Geez!! So I lived on home made yogurt and drank tons of olive leaf tea rather than get more "treatment" form the kind doctor who had a friend who has celiac (which is why I stupidly trusted him).

I could go on.

The ear infection as it turns out is not an infection at all. Instead it is part of my reaction to salicylates, which being stressed really more than likely made a lot worse. I went on a no grain diet after that for roughly a year. And began experiencing the worst case of insomnia that I had ever had along with what I now learn is called myoclonus. Now I find out myoclonus can be caused by neurological damage both from gluten and from salicylate sensitivity. As can the flaking ears and vulva. No one ever gave a name to the myoclonus. I had to figure it out for myself even though I had reported it to various types of doctors for over 30 years.

Myoclonus is the condition where one's body jerks just as one is falling asleep or in other deep rest. This happens to me to such an extent that sleep is often impossible at night for hours at a time no matter how tired I am or haow many epsom salt baths I take (though it does sometimes help).

As a young adult I dealt with it by keeping busy with my ceramic sculpture I did full time after finishing with my house cleaning business half time in the afternoons. I would stay up working at the ceramics studio until 2 AM, ride my bicycle home, talk and relax for an hour and get to sleep around 3 or 4 AM. Then up at 11 AM or noon. And ride my bike to my clients house to do more cleaning. This worked for me and I adjusted to it, though I knew it was weird. But it was impossible for me to sleep at night before 3 or 4 AM anyway, so why not??

I still have the same condition. But sometimes I can make it better. I find if I take certain homeopathics it helps. Diet helps. Walking and stretching of the psoas muscles and doing light weights and yoga is still a necessity since besides the salicylate and gluten sensitivity I also have an old bad injury to my L-5 vertebrae from when I was a kid. The 3 wings in the back of the vertebrae were knocked off. Eventually they disintegrated--but the bone is still jagged. It lacks certain support plus irritates my sciatic nerves. Taking pain meds is contraindicated due to my sensitive kidneys etc.

Staying off most herbs and spices as well as other high salicyclates is now generally necessary. Though like right now taking a few healing herbs for my irritated bladder is necessary and healing. So I am back to herbs again to heal and soothe the cystitis since that still works for me strangely enough. That and diet of course. And a homeopathic for the cystitis.

If I had not taken the trouble to investigate the causes of my own ill health I would long ago have been dead.

Meanwhile, even though the herbs were not the final solution, they were and have been and sometimes still continue to be a lot better than taking antibiotics generally. I will only take antibiotics now in an extreme emergency situation.

No easy answers here. However I just thought I would clue you in as to where I am coming from.

As soon as I am better again I am having a battery of tests done by my new naturoapth/homeopathic doctor just to make sure I am covering all basis. Maybe just maybe she can help me become a little less auto immune reactive?? Its very possible I have some underlying something that is exacerbating my condition. She is young and I regard her highly. I am hopeful at last I have found a doctor I can actually work with who will not cause me harm and who may in fact actually help. I cross my fingers.

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I am really interested in neurological problems other coeliacs suffer from. I have tingly fingers and hands, burning pain legs and arms all the time and fatigue almost all the time and occassional muscle cramps up the back of my legs.

The only vit I am low in is vit d which I am having d3 drops to boost. I have been dx with fibromyalgia. I have all the tender points.

My pain started about 1 year AFTER I went gluten-free. Pain started when I was on an antidepressant called cymbalta (which is actually the treatment for fibro). I am off cymbalta cos it caused terrible neuro side affects (hallucinations, body jerks etc).

Just thought I would share my experience in case anyone else has had this strange experience.

I find this very helpful as my vit levels might also not be low but I definately am having nuero issues. Have you ever tried a larger amount of B12? I take an actual nerve B complex and a long as I am on it I do fine, been taking it since Aug. If I go off, I am miserable. I just started back on the full dose Monday and while my feet and hands are no lobger falling asleep at night it is going to be a few more days tilm the tingling stops, it takes about a week to get into my system.

Thanks too for letting me know about the cymbalta, I have a family member on it.

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UPDATE: Prolapsed (bulging) disc was found by German doc today. I was guven a injectable steroid, injected pain blocker, acupunture, laser treatment and an IV with B & C vits. Next week I go back for a epidural steroid injection.

Can you beleive? This doc nailed it in about a minute. I have been dealing with base doc for a year now. They searched for everything under the sun with my symptoms. Last 2 times I walked the dogs I was in misery the next day, the pain went up back, down my leg, pain shot into my hips. I told my doc this and he told me that it was normal to have aches and pains, said that the numbness I was having was due to poor circulation. I asked him if he thought any of this could be related to the pain in my back and he told me that there was not anything wrong with me. I let him know I had successfully been able to get the pain to go away by using a large dose of B complex and Lcaritine, he told me to stop all the vits, that I did not need them and I was only going to harm myself by using them. Ha!

I so want to go into my base doc's office and slap this piece of paper down on his desk. This man made me think he thought I was making this all up. Ugh! At least I have some answers now and I am finding a way to get treatment finally. How absolutely frustrating though!

Annette

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Bea, I did take the high oxalates out of my diet and was awre of possible dumping so have been real careful not to take them all out completely at once and I think that is all going well actually. I don't know if you saw my update on my burning, itching scalp but doc I had an allergic reaction to an ingredient in a hairspray I used in Nov. Nothing I tried was working to resolve the itch. He gave me a topical steroid and it is improving. I did take an allergy test as I have gotten so tired of guessing and experimenting....hope to have those results back soon. And yes, I did read that about not taking vit C because of my stone issues. I am hooked up now with my calcium & magnesium citrate as well as biotin, and have started back on potassium.

Last night after doing yard work I was sitting watching TV and my left arm from my elbow down started feeling like my feet so I decided to go back to the full dosage of the B complex. This is nuts!

Hey AVR, I'm interested to know how much mag/calca and potassium you take per day. Also what brand of multivit do you use? Is it high in Vit Bs? I need to look for a new one as the Solgar one has too much 'other stuff' in it. Thanks!

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UPDATE: Prolapsed (bulging) disc was found by German doc today. I was guven a injectable steroid, injected pain blocker, acupunture, laser treatment and an IV with B & C vits. Next week I go back for a epidural steroid injection.

Can you beleive? This doc nailed it in about a minute. I have been dealing with base doc for a year now. They searched for everything under the sun with my symptoms. Last 2 times I walked the dogs I was in misery the next day, the pain went up back, down my leg, pain shot into my hips. I told my doc this and he told me that it was normal to have aches and pains, said that the numbness I was having was due to poor circulation. I asked him if he thought any of this could be related to the pain in my back and he told me that there was not anything wrong with me. I let him know I had successfully been able to get the pain to go away by using a large dose of B complex and Lcaritine, he told me to stop all the vits, that I did not need them and I was only going to harm myself by using them. Ha!

I so want to go into my base doc's office and slap this piece of paper down on his desk. This man made me think he thought I was making this all up. Ugh! At least I have some answers now and I am finding a way to get treatment finally. How absolutely frustrating though!

Annette

I'm so happy that you found a Dr. that has some answers!

I've had my share of Dr.s that can't figure things out, so they assume it's "all in our heads". There's a couple of them I'd like to slap up side the head with proper DX papers. :angry:

I hope the injections help you. I had them years ago after falling and damaging my tailbone. They made a world of difference in me.

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Hey AVR, I'm interested to know how much mag/calca and potassium you take per day. Also what brand of multivit do you use? Is it high in Vit Bs? I need to look for a new one as the Solgar one has too much 'other stuff' in it. Thanks!

I should have read further up... you have a list there!

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Congratulations Annette on finally finding out what has been happening! Disc problems can be very painful, limiting and annoying.

Here's to you moving forward and feeling a lot better and stronger soon!

I can well understand your frustration with your previous doctor. Obviously he was not trained concerning back problems but was oblivious concerning the fact he should have referred you to someone else.

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UPDATE: Prolapsed (bulging) disc was found by German doc today. I was guven a injectable steroid, injected pain blocker, acupunture, laser treatment and an IV with B & C vits. Next week I go back for a epidural steroid injection.

Can you beleive? This doc nailed it in about a minute. I have been dealing with base doc for a year now. They searched for everything under the sun with my symptoms. Last 2 times I walked the dogs I was in misery the next day, the pain went up back, down my leg, pain shot into my hips. I told my doc this and he told me that it was normal to have aches and pains, said that the numbness I was having was due to poor circulation. I asked him if he thought any of this could be related to the pain in my back and he told me that there was not anything wrong with me. I let him know I had successfully been able to get the pain to go away by using a large dose of B complex and Lcaritine, he told me to stop all the vits, that I did not need them and I was only going to harm myself by using them. Ha!

I so want to go into my base doc's office and slap this piece of paper down on his desk. This man made me think he thought I was making this all up. Ugh! At least I have some answers now and I am finding a way to get treatment finally. How absolutely frustrating though!

Annette

I am sooo glad Annette that you finally have a proper diagnosis! I remember that you've been in quiet a lot of pain over the months I've been on here. Well done to the doctor who worked it out. I think that German doctors are brilliant because they have the holistic approach that certainly UK docs don't have. If they can't give you a pill for something they aren't interested here! You have inspired me to get some further investigations in to my shoulder and neck pain... which all started ages ago after mild whiplash.

Good on you. Keep us updated with your progress!

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Neuropathy was the first symptom I had (the digestive cramps came years later). By the time I figured out that I was reacting to gluten, I had so much pain that it was hard to walk. I took B12 and magnesium and Vitamin D supplements early on. After several months and then again after six months, my vitamin and mineral levels were tested, and while B12 was low, they all looked within normal range. I still struggle with neuropathy, but less now than earlier. What has helped? Avoiding foods that cause an autoimmune reaction (currently just gluten & alcohol, but previously also corn & soy), and (I believe) acupuncture. My acupuncturist is specifically targeting it (along with digestive, reproductive, and immune issues). I only experience neuropathy now at the bottoms of my feet and when I'm tired, which is a *huge* improvement.

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Hey AVR, I'm interested to know how much mag/calca and potassium you take per day. Also what brand of multivit do you use? Is it high in Vit Bs? I need to look for a new one as the Solgar one has too much 'other stuff' in it. Thanks!

Caroline, I take Solary brand calcium citrate 1000 mg (4 tabs daily), split (2+2) before breakfast and before dinner. Now brand magnesium citrate 500 mg (3 tabs daily) split after each meal. Sundown brand potassium 595 mg twice a day.

Are you having flinching/muscle stiffness issues? I also take a manganese.

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Neuropathy was the first symptom I had (the digestive cramps came years later). By the time I figured out that I was reacting to gluten, I had so much pain that it was hard to walk. I took B12 and magnesium and Vitamin D supplements early on. After several months and then again after six months, my vitamin and mineral levels were tested, and while B12 was low, they all looked within normal range. I still struggle with neuropathy, but less now than earlier. What has helped? Avoiding foods that cause an autoimmune reaction (currently just gluten & alcohol, but previously also corn & soy), and (I believe) acupuncture. My acupuncturist is specifically targeting it (along with digestive, reproductive, and immune issues). I only experience neuropathy now at the bottoms of my feet and when I'm tired, which is a *huge* improvement.

Good to hear your success, if gives me hope. Feeling better today!!

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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