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Member Since 21 Nov 2007
Offline Last Active Apr 26 2013 01:24 AM

Posts I've Made

In Topic: Any Ideas For These Symptoms Beyond Celiac

15 April 2013 - 07:27 PM

Glad to help you get more perspective on this issue concerning one's thyroid, FlowerQueen!

In Topic: Any Ideas For These Symptoms Beyond Celiac

06 April 2013 - 02:57 PM

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.

In Topic: Gluten Reaction That Is Not Intestinal In Nature

06 April 2013 - 02:44 PM

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?

In Topic: Ataxia Response To gluten-free Diet?

06 April 2013 - 02:18 PM

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??

In Topic: Construction At Work

23 October 2012 - 12:32 PM

Congratulations on your new job!

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.

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