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Just want to say these last two years I discovered that besides having celiac I also have a high degree of sensitivity to a variety of other food chemicals namely: salicylates, tannins, amines and oxalates. These are not allergies, instead they are sensitivities, which INHO unfortunately are largely ignored by both sides of our medical establishment in the USA.
Nevertheless, IMHO they can cause problems that greatly aggravate the quality of one's life and can, if left ignored, create more severe problems down the road--not to speak of skin and breathing conditions, and learning, behavioral and neurological problems (including migraines and myoclonus), especially if these sensitivities combine with either more limited or severe gluten intolerance.
I have found a good support group and info on the salicylate sensitivity forum which covers more than just salicylate sensitivity these days. There is a lot of information too about this coming out of Australia, notably Sue Dengate's food and chemical sensitivity site plus her books on the subject (she won the woman of the year award in Australia recently), as well as the RPAH Failsafe diet.
Feingold here in the USA also in a more limited manner covers some of this, plus there is the oxalate info site and trying low oxalate yahoo group which comes from a medical researcher in Texas, and various information coming out of parents concerned about their autistic or ADHD (or ADD) children (which also affects adults too of course).
This kind of information is often not mentioned in the US, but IMHO I have discovered these conditions are not as rare as I first thought--despite our medical establishment seemingly at least lagging behind.
I also wanted to mention that it seems like many folks here who have thyroid problems discover that their condition improves if they have been gluten free for some time. I have a friend who still has to take thyroid medicine for instance, but his supposedly "never to get better" Hashimotos' diagnosis went away--so his thyroid is getting better rather than deteriorating more as was originally expected.
I am glad the awareness is growing that some of us are more sensitive than others. Neurological symptoms are often experienced by those of us who are simply more sensitive to gluten than others. It can be caused simply by not getting the nutrients you need to support your neurological system due to leaky gut in the intestinal villi.
In some cases, IMHO plus the indications of new studies, gluten can attack a variety of places in the body--not just the villi in the intestines. Certainly this has been my experience.
In either case, it could be an issue living in a household that has two gluten eaters. Any possibiilty you could ask them to eat their gluten away from the house?? Plus also consider keeping your towel and toiletries separate etc. and avoid hugging them if they might have gluten crumbs on their clothes, hair, skin etc. and then putting your hands to your face. I have taken to washing my hands frequently after I have gone out and come back into my house, no matter what. Assuming you are that sensitive it could make a big difference. Certainly it would be worth an experiment, yes?
Its good to see your stories CleverKate and Kamma. I am so glad you both are doing so much better being off the gluten. It is such an amazing thing to learn, eh??
I too have struggled with gluten ataxia for years, though it may not have been as obvious to others given the fact I had figured out I was "allergic" to gluten by the time I was thirty (I am now 63). Little did I realize the continuing, progressive damage due to still being on trace amounts of gluten however many years afterwards. It was not until the Fall of 2008 after I joined celiac.com that I began to realize how minute amounts of gluten severely affected me. Of course no one believed me, but my body was living proof. Even now I am often told that no one knows anyone as sensitive as I am to trace amounts. But this gluten ataxia explains that, does it not? Plus I also react in my lungs and kidneys, as well as my intestines.
For myself I have had improvements in my ability to remember nouns (not perfect but definitely better), less weakness and falling at night, improvements (but not perfect yet) of coordination in the morning, less tingling in my face and limbs, improved memory, improved gait and balance, overall improved coordination etc.
In the meantime I have discovered that besides likely out and out celiac since I was an infant (a fact hidden from me by my parents unfortunately since they thought I had "grown out of it"!!), I also have pretty severe salicylate, amine, tannin, and oxalate sensitivity too. As you might imagine this has greatly reduced the range of my diet!
However recently I just started seeing a new doctor who combines naturopathy, homeopathy and acupuncture. I can't use his
TCM or most of the Naturopathic herbs, but definitely am helped by his knowledge and openness, as well as willingness to learn and do relevant testing.
He also finally said yes I do have gluten ataxia, especially after he saw me practically vibrate off the table flailing away 15 minutes later after he came back into the room while a lay there with a bunch of acupuncture pins in me, worried I might hurt something. He said my myoclonus attack was a type of epilepsy, something I was not aware of. No other doctor either cared or was aware enough to figure this out.
Previously it was always a mystery--something however I have had to deal with almost every day and especially every night when I try to go to sleep and find my body jerking away or am doing my stretching and yoga. Fortunately diet (read making everything from scratch) and epsom salt baths and of course daily walks and the yoga helps immensely. But now these acupuncture points seem intriguing. So as a resultI am also learning how to apply self administered acupressure, for now via reflexology and some Donna Eden compact discs I have. And yes it is helping a lot!!
Over the last two years I also discovered that the use of a few select herbs still work for me. Initially in the fall of 2010 Ii went off all herbs despite using and studying herbs for self use and for my friends off and on for 40 years. The thing is is that most herbs are very high in salicylates and/or oxalates. In the past in my ignorance, I was both helping and hindering myself with them given my salicylate sensitivity (and yes I had always been sensitive to aspirin and even remember thinking apples gave me bruises when I was 3--and threw up the first time I had chamomile tea)!
Interestingly these detox herbs that I still use (or should I say, that I now use again?) are considered by some to be antidotes to salicylate sensitivity, although I seem to have been gradually able to handle a few more herbs than most with these various food sensitivities.
I realize this topic is about gluten ataxia, but IMHO I am not likely the only one here who also has extra food sensitivities that are messing with the nervous system along with the gluten. I just want to put it out there in case any of you might have some similar issues. My bf and co worker have had similar issues, so I figure I am not the only one and its not as rare as some would make us believe.
My bf for instance has been greatly helped sharing my completely gluten free and low saliylate and low amine diet. He no longer falls down and has to crawl on the floor at night, can sleep now like a champ (something he never could do before) plus his ADHD and brain fog and depression has gone away, his ability to do math and be more aware of social dynamics has soared, plus his migraines are greatly reduced (as have mine by the way).
Any thoughts on any of that??
I also agree, by using our brains and exercising regularly, taking fish oil (I have to freeze mine--non flavored cod liver oil from Twinlabs) and other supplements, and doing things with our lives, we can and do actually grow new neurons in our cerebellum, making all the difference despite any that got killed off from eating the gluten we ate lo so many years or somehow trace ingested in the past--i.e., it ain't over 'til we give up. And who here is going to do that??
I do understand your concern about the gluten in the plaster dust. It is a real concern. I suggest you wear a good dust mask. You probably won't need the heavy duty kind with charcoal filter nozzles--which might cause you some distress if worn all day! If you were in the same room with the construction however the heavy duty mask would be needed--and a shower and change of clothes once you got home.
You might also want to talk to your boss about using an air purifier. They do help reduce the dust.
As you likely remember I can relate. I had trauma to my L-5 vertebrae and sacrum as a child and have to exercise to make up for the lack of bone on the back of the L-5 vertebrae (the "wings") which were severed off when I was young as well as exercise to keep my sacrum strong and act against chronic sciatica otherwise. So exercise really does help--walking, stretching, yoga.
However I also have myoclonus and nerve damage in part exacerbated by salicylate, oxalate, tannin and amine sensitivity as well as years and years of having trace amounts of gluten which seemed to damage the myelin sheath surrounding the nerves. Slowly I am getting better over time. Yes I take the B vitamins and minerals and as you know the nattokinase that unfortunately does not seem to work for you (though some other fibronylitic enzyme might help against the possible scar tissue).
I take barberry regularly--very small doses which really helps against liver damage and acts as an antidote to salicylate sensitivity--and recall you take nettle tea which acts similarly. Wish I could but its high in tannins...
The epsom salt baths continue to help.
Sometimes it just is not cut and dried simple. Its everything altogether. And yes we are all a little different.
Just today I was marveling at being pain free despite the sudden rainy cool fall weather. This is unusual compared to the past. I chalk it up to avoiding the high to medium amines etc. by eating only really fresh food with nothing preserved--and only eating white lima beans (and take calcium citrate beforehand to bind the oxalates) rather than eating colored beans of any sort to avoid the tannins--and of course continuing to eat relatively low salicylate foods.
Of course enzymes and probiotics help--but you knew that. I also have frozen plain cod liver oil which also helps (and avoids the amines).
I celebrate now being able to eat boiled kale (with the water thrown out afterwards to avoid any possible oxalates) however twice a week! And continue to detox using bentonite clay and psyllium husk drinks away from food almost every day combined with taking two doses of chlorella during the day (with food) for extra energy (and help detoxing).
Learning how to avoid CC from gluten and now how to deal with all these food chemicals I am sensitive to has been a slow learning process--but totally worth it given how much better I feel overall.
Slowly we learn our bodies. Good luck with figuring out yours. Likely you will if I know anything about you.
I agree with what Mitzi said, though other things can contribute like the cross contamination and damaged villi in the intestines causing mal absorption of basic nutrients you need for healthy nerves and brain etc. like B vitamins and vitamin E as well as the minerals (calcium, magnesium, zinc, trace minerals).
Sometimes taking pancreatic enzymes and probiotics to improve digestion, and things like dandelion root or nettles or barberry (we are all so very individual--what agrees with one may not with another) to help out the liver, and perhaps St. John's Wort (as a tea--not as a tincture due to gluten likely in the alcohol) as a mild herbal non addictive anti-depressant can be a winning combination.
One other thought--are you certain there was no gluten in the anti-depressant pills?? Sometimes its there and then you go through withdrawal symptoms when you finally go off them.
Other possible sensitivities can also create depression and mood swings too--like lactose or casein or various food chemicals (salicylates, amines and even oxalates or tannins). Often the damage the gluten does sets us up for other sensitivities that really can affect our moods amongst other things. Sugar by the way is in general really damaging and can set up addictive mood swings all by itself.
So my best suggestion is to keep sleuthing and narrow down the possibilities.
I agree--a vacuum cleaner with a hepa filter is the best. I bought a used refurbished one and its great! However I have also used a shop vac with good success. Thing is though that when you open it up you really need to be suited up with your mask, gloves and a clothes you plan to wash.
You can use the wet paper towel method, and then let it dry before using the vacuum.
Meanwhile I use one of those masks with carbon nozzles and extra cotton filter on the outside for nasty jobs like that. It does work.
As far as plaster goes, you can get the old fashioned kind that is just plaster and I think with a trace amount of corn. You mix it yourself. Again use the mask and gloves when mixing (and mix it outside) just in case there is CC. It does work! Then when it comes to sanding the patch, use the wet sanding method so the dust does not go into the air--and again the mask etc.
I always wash my clothes afterwards again to avoid CC.
I have gotten ill from the dust from sheetrock. If its not cleaned up, its the bad gift that keeps on going. I know since I am a property manager of old cottages that often have needed repair.
If you can either wear a heavy duty mask with goggles or have someone else take a dampened paper towel(s) to pick up the sheetrock granules, and then just throw them away into a plastic bag, then it would reduce the amount that goes into the air from vacuuming.
You can buy vacuum cleaners that put very little dust into the air. I just got one from a used vacuum cleaner place, which reduced the cost to half.
I agree with cleaning the rest of the room. I would use a heavy duty mask while doing it, or have someone else do it.
Hi Bart, Glad to hear you were helped by some of our comments about sals after all. I too was helped here in that way concerning other food sensitivities. I literally had no idea.
But on top of that, if it weren't for this forum I'd have had no idea that I needed to be as careful of cross contamination from gluten as I do. By being that careful, I now almost never get a bug anymore, whereas in the past I was constantly ill it seemed, for months at a time despite all my best efforts.
I still get migraines from time to time but even they are lessening as I learn to avoid medium to high salicylates, oxalates, amines and tannins as well as completely avoiding the gluten.
I am 63 years old and having a renewed more youthful, no longer painful (for the most part) body and outlook. Its a bit of work, but all so very worth it.
The other piece of the puzzle I am unravelling that is brand new is that cleaning out the liver and gall bladder is key to having less severe reactions to gluten and other possible food sensitivities. It makes sense when you stop and think about it. Thus a healthy diet with no sugar which balances the type of proteins you get as well as fruits and vegetables you can handle is again key.
Plus there are a very a few herbs taken in low dose that are actually considered by some to be antidotes to salicylates and helpful for liver and gall bladder health: barberry, nettles and sometimes dandelion. My thinking is that they should be very beneficial for many who also just have celiac since a lot of folks here have gall bladder difficulties. Certainly it seems to be shortening my reactions, and especially the migraines I tend to get when exposed to any of the above listed "baddies."
Hi, I know this is a late response--but just saw the thread now.
I also have had intense itching, cracking, scaling skin and hives in the genital area including around the anus--and terrible flaky, scaling, crusty inside of my outer ears.
I used to get small pimples too as a young adult before I was mostly off all gluten--in these areas as well as my back, scalp, neck, and over my breasts. Awful! If I ingest gluten I start getting the pimples again.
The other stuff however which I will call psoriasis and hives, seems to be related to other additional food sensitivities. In me namely salicylates, amines and tannins. Being mostly off the heavy to medium and sometimes even low food chemicals like that, has greatly improved my condition.
Other things that have helped are taking bentonite clay regularly with psyllium husks. I always sprinkle the bentonite on the top of a large mug of water and let sit for at least 4 hours before stirring and drinking. In addition I take an equal amount of psyllium husks freshly mixed in another large mug of water. It absorbs toxic chemicals, heavy metals, and various bacteria and parasites and then carries them out of the body. Its great for better bowel movements too. Just make sure you take it at least 2 hours after eating anything and one hour before you ingest anything new besides water.
I also have found taking small amounts of barberry bark regularly also helps my liver and gall bladder which then in turn helps out my skin and lessens some of my food sensitivities by improving my intestinal health.
Just thought I'd give whomever a heads up in case they go looking for this kind of information.
Definitely gluten can be a huge factor. However for me I have also had food sensitivity trouble with a variety of natural food chemicals--namely salicylates, amines and tannins. Hope you don't but just wanted to let you know its possible.
I have had problems with the charcoal filters, likely the coconut though it could be other stuff I am sensitive to. I am very salicylate sensitive as well as celiac. Hope you don't have that problem. I agree in any case, try spring water for a while and then go back on the filtered water and see if there is a difference.
I agree--its likely you need to be completely off all trace gluten, at least that is what I have had to do to feel better. A bite of gluten something once a month really is likely too much, honestly. For years I was mostly off gluten, but had no concept that there even was trace gluten out there. But it was messing with me big time, and eventually brought out other problems that greatly exacerbated my skin conditions--not to mention making me catch every bug that came down the road. As it turns out besides celiac I also have extreme intolerance to salicylates, amines, oxalates and now tannins. Slowly I am learning how to deal with this and am making progress. I have gotten some great advice on the Saliyclate Sensitivity Forum.
Like Ciamarie suggested, a food diary could help you immensely.
By the way, I have the flaky itchy ear problem too. I was given some real horse like strong antibiotics and it only made me worse. For me these "itchy bitchies" that were driving me crazy is a combination of salicylates and oxalates. Unfortunately here in the States no doctor helped me. I had to figure it out on my own with the help of the Salicylate Sensitivity Forum and a few other sites like Robotgirl's description and listing of the Australian RPAH Failsafe diet.
I also get hives which seems to be more of an amine and oxalate problem. I have yet to figure out the sulfites--which maybe is my next hurdle though I pray that is not yet another culpret. I do well however taking MSM which helps with the sulfation pathways and thus have no problems eating cabbages etc. But Ihavenever done well with packaged foods, which i s a sign sulfites could be a problem.
However, along those (sulfation) lines, I have gotten great relief taking epsom salt baths, as do many with these problems. I also regularly having bentonite clay sprinkled on water and let sit for 4 to 7 hours or more before stirring and drinking, along with freshly made psyllium husks. This is a great detoxifier of bacteria, chemicals, radiation etc.; IMHO it is necessary to have something to help detox your liver since when your skin gets like yours and mine nearly always there is an overtaxed liver in the picture.
Going off or reducing your intake of heavy meats too might be a good idea in this arena too since sometimes it gets clogged up with cholesterol balls trying to capture all the errant stuff that your liver has to deal with as a result of likely leaky gut. Another factor can be chemical or radiation overexposure that can lead to real liver and skin problems. I always thought leafy greens were the answer, but now I realize they need to be the right leafy greens or the greens can actually precipitate skin problems courtesy of salicylates, oxalates etc.
Taking omega 3 fish oil can be very healing (I order Twinlabs cod liver oil from iHerb and immediately pour it into a wide mouth bottle and freeze to avoid the amines). Amines form from any food that is not absolutely fresh...especially meats and fish, not to mention food purposely aged like the worst being sauerkraut and cheeses. Thankfully I now can eat home made yogurt again.
Products like Histame can be very helpful. As can Kirkman Labs Phenol Assist. Probiotics are a must, but difficult if you have amine sensitivity. I found one that works that is casein/lactose and other common allergen-free is Kirkman's lactobacillus duo.
Well I have inundated you with possibilities I know. But better some things to investigate than to feel nothing can be done... Plus these days I don't get on this site that often.
My bf and I live in San Jose near Los Gatos, and work in central San Jose. We have thought of putting together a celiac support group. Maybe this could the beginning of one?? Like many others here we also have other food sensitivities too. We are both involved in the creative arts and recently hypnotherapy.