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

#826505 Is It Safe To Vacuum Up Gluten?

Posted by on 30 September 2012 - 06:37 PM

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.

Good luck! It should work out fine.
  • 1

#814530 Unbearable Hives

Posted by on 28 July 2012 - 11:46 PM

I have found it helpful to take epsom salt baths and to detox using bentonite clay sprinkled on top of water in a mug and let sit 4 to 7 hours or more (covered to avoid flies and cats!), and then stirred and drunk with another mug of water with an equal amount of psyllium husks quickly stirred in. I started with a teaspoon of each and now am easily able to take a tablespoon of each. I have it most days though I invariably miss a few--which I think is just fine by now. Its best taken on an empty stomach, at least 2 hours after eating and an hour before eating anything more. Its important to drink extra water during the day. The bentonite/psyllium combo absorbs all kinds of chemicals, radiation, toxins, bacteria and helps them safely leave your body. Thing is is that it does help reduce my itchy hives and eczema and my myoclonus often precipitated by itchy bouts due to hives.

Walking every day for an hour also helps, and eating lots of (for me low salicylate and low tannin) veggies. Hatha yoga also helps. Its been proven to positively change one's biochemistry. Being on a vegetarian diet also seems to help. So I eat lots of beans and brown rice. The beans though for me have to be white to avoid tannins. And of course well soaked and cooked.

Also its important to look at what fats you are taking. Omega 3 fish oil can really help reduce one's inflammatory response. I get the Twinlabs plain fish oil, put it in a widemouth jar and freeze it to avoid amine formation.

I use spring water rather than regular filtered water due to the coconut husks used to make the carbon filters. I don't know if you have a problem with coconut, but what they hey, if you do have salicylate sensitivity it could be a problem.

If you do have a salicylate problem it means you are sensitive to some phenols. So using things like phenol assist by kirkman labs can help. And the product Histame can help with a great variety of amines...including histamines. Tannins can be yet another problem as can oxalates.

What I am implying here is further investigation into your diet is likely needed. There are solutions once you figure out what the problem is. No matter what, IMHO you may well have a problem with an overtaxed liver due to likely leaky gut from the gluten problem. This in turn makes your body become sensitized to a whole host of foods. Then of course your liver gets overtaxed from the detritus. And then next on the list is your skin and lymphatic systems...

IMHO taking steroids is no way to give your liver and skin a chance. Its likely your body wants you to discover what is actually bothering it, rather than coverup of symptoms with drugs. At most it is a dangerous stopgap though very understandable you would want to try it, it comes at a cost. Plus in your case it just is not working.

IMHO look to the Royal Prince Alpert Hospital in Australia to give you a few clues as to what is going on and how to figure it out with their Failsafe Diet.

Meanwhile though while you still do have some symptoms of DH do get it checked out rather than get another invasive procedure into your intestines. It is a very effective and less costly and often more accurate way to get a diagnosis of celiac since its right there obvious where to take the biopsy on the skin--right next to the little clear pustule filled areas. DH and celiac go hand in hand.

No matter what, whether its DH or not, this gluten sensitivity (or celiac) could be precipitating or at least making the other itchy symptoms far worse than they otherwise would be.
  • 1

#786647 Bad Timing

Posted by on 10 April 2012 - 10:33 PM

I react to food from shared oven too. It was the only intolerance I discovered while keeping a food diary, only at that time I brushed it off as total nonsence.

Unfortunately my body don't need any scientific evidence to get sick. It even goes further than that and gets violently ill from grain products that are scientifically proven harmless to celiacs.

I'm sure the oven advice is irrelevant to most celiacs, but not all of them and unless you try it you cannot know which of the group you belong to.

Thanks Pac for substantiating the experience of at least some of us here.

If this experience is so rare, why is it that at certain chain restaurants like PF Chang's they now use dedicated ovens for the likes of us?? And why is it that my bf and I and another friend of ours all have suffered from eating food made in ovens also used for baking gluten??

IMHO a lot of what we experience has not even been begun to be researched by doctors and scientists. It is not from lack of opportunity, it is from lack of funding as well it seems as an overall bias against doing research on this subject called celiac and severe gluten sensitivity, not to mention other food intolerances. In addition IMHO there is the sacred cow factor. What could be more sacred than an apple pie or a big mac or a hot dog bun or pizza or a chocolate cookie for instance--and then to have to go further and really study the vagaries of cross contamination of gluten with some of us more sensitive folk, well dear ones that is generally not even on the page. Eventually someone famous enough will spur on or pay for this kind of research. For now I am not holding my breath.

It is my wish that certain folks here were a little kinder in their discourse. It makes me question my participation on this site, when here I am just trying to help someone consider all the possibilities, just as some have for me in the past. The original quester appreciated my comments. Why cast stones or get angry?? It simply is not needed. We are a community here to support each other IMHO, not bully each other or wave pointing fingers.
  • -2

#786482 Bad Timing

Posted by on 10 April 2012 - 10:43 AM

If it was me I would likely think I had been CC'd despite my hosts best intentions due to the fact you got D. One has to go to a great deal of trouble to avoid CC.

You could gently enquire sometime (without being snide or accusing) as to just how far they went cleaning and getting a new chopping block and the like and keeping their hands clean from gluten. You don't want to have to go through this again... You need to let them know in the friendliest way possible.

Maybe even invite them over to dinner and then explain and show them what you had to do to make your house gluten free. They might actually be interested if they are the caring folks you say they are. Just remember to have them wash their hands before eating or helping with the food just in case...

Provide them with a guest towel too. I learned this one the hard way! I got glutened from using the same towel my brother did. ( I washed my hands and then wiped my hands and face with the towel. D soon thereafter!)

If you say nothing they might invite you over for another dinner thinking all was just fine! And then repeat of story.

I also react to ovens that are normally used for gluten baking. Not everyone here does, but there are many that do--including my boyfriend.

Sugar too seems too have been a culprit. Often eating sugar can lower one's immune system. Recently it was just declared to be a toxin I think (help me here folks?? I was told this but didn't see the reference myself).

I even react to store bought gluten free flour. I hear there may be the sulfites in most of the packaging... which the absorbs into the flour--which can be enough for some folks to react. Plus CC is often rampant in packaged flours at the best of times.

When I am going to make a baked goodie, I now grind my own rice flour and have found many ways to make that work. I often like putting in some blended chopped peeled yam or blended peeled chopped white potato and/or some arrowroot (from the local supplement/herb store) to help the flour bind since I don't use eggs in my cooking any more.

I am also starting to use well washed, dried soaked cooked and then cooled beans and put say a cup of them into the blender too. Its way better on the digestion than the dry ground bean flour. Plus again no sulphites or potential CC.

For myself one way to tell the difference between a simple allergic reaction (I have many things I am allergic to--which includes most medium to high salicylates and amines from aged foods) is to have some baking soda in water chased by more water and see if I feel better or not.

If I feel better from taking the baking soda I know I am more than likely dealing with an allergy or sensitivity of some sort or other. If that is the case I then take a benedryl knockoff (the ones with the clear capsules).

I also find taking an epsom salt bath provides a good deal of relief. Maybe also have a vegetable smoothie (I use lettuce, celery, parsley and either a whole or half peeled apple.) I find it a great pick me up!

Otherwise if its just CC to gluten, you have to ride it out!! Maybe even take charcoal capsules at the beginning to absorb the toxins before they knock out so much of your villi.

And/or it could be simply a bug. I certainly have had the experience of having what started as a CC reaction to gluten ends up being an actual bug due to the shock to my system from the CC. Now after being glutened I try to make a practice of just staying low for around 3 days recuperating rather than push myself and get seriously ill.

Good luck--hope you feel much better soon! And let's imagine the bug (if it is a bug) will fly away quickly!
  • -2

#779124 Feeling Like There Is Not Much Light At The End Of The Tunnel...

Posted by on 07 March 2012 - 09:54 AM

Hang in there Caroline! For some of us it just takes longer. Plus it may take more sleuthing on your part to figure out what all is going on.

I agree with the other posters, and you know me, the ex herbalist due to pretty severe salicylate sensitivity. Though I do use them now and then when I really need them--like right now I am using uva ursi, marshmallow root and nettles when my bladder is acting up. And like magic they are helping me once again--along with a homeopathic for cystitis. But this is rare for me these days (except for the nettles). I do believe that herbs are wonderful healing tools, but if they aren't doing the job, it has to make you stop and wonder if they are right for you or not.

Whether or not the herbs agree with you, it may be best to simplify simplify simplify right now to figure out what is going on. Maybe even simplify your diet more to see too if there is anything you are eating that might be bothering you besides just the gluten (or the herbs or whatever). It was a huge shock for me to discover for instance that I am sensitive to so many fruits, nuts, and vegetables as well as some meats--not to speak of the herbs. Sheesh! I certainly hope you don't have my extensive allergies etc. However, despite whatever convenience says, its best to be open minded and seriously observant if you are still having problems. Truthfully.

In my case, besides the salicylates, I have had to go off most animal fat to reduce the burden on my liver. I now can use a bit of skinless chicken cooked in with my veggies and azuki beans or black eyed peas, but not much plain chicken like the old days. And certainly not beef or pork or venison, or even eggs or butter.

Apparently damaged villi in the intestines often have difficulty absorbing fats properly--so many people here on celiac.com have had to struggle with congested liver and gallbladder issues. I feel like I have largely overcome it to the extent I did not have to get surgery, and no longer have pain, however it looks like this change of diet will be in place for me for some time while my body slowly heals. I still take nettle tea regularly since it is, while mild, still good for the liver as well as systemically, plus it is one of the few herbs that helps counteract the effects of salicylate sensitivity.

I do do very well with home made yogurt made from 1% organic cows milk. Others here need to use goats milk or no milk at all (or maybe substitute it with coconut or almond milk for instance). Recently I have also been making home made sauerkraut using some of the whey from the yogurt as a starter. Both are great for getting healing probiotics into your diet on a regular basis, which can go a long ways towards healing your damaged villi.

You also might want to see if you are meanwhile getting CC'd from trace gluten in your immediate environment. This could comparatively be a simpler answer to your problems. And perhaps the first thing to investigate. That could well be enough to make one depressed, since even CC gluten exposure shuts down the blood going through the carotid arteries to the brain roughly 30%--which then often causes depression. Anxiety is a close second. What that boils down to is to make sure everyone you are living with is not eating gluten, especially on the premises. You may even need to go so far as to have them change and shower before getting close with you. I have even gotten glutened from washing a bag of my brother's clothes for instance even though he wasn't even here on the premises. Don't you just love these autoimmune conditions??!

I find I also do better if I wash my hands a lot, especially before eating--anywhere!-- and establish a habit of not putting my hands to my face as much as possible. Its hard to break old habits like this, however it h as really helped me, as well as my partner and my friend who also has severe gluten sensitivity.

So good luck and good sleuthing to you Caroline!

Sending my best,

  • 0

#774665 Need Some Advise And Support

Posted by on 20 February 2012 - 12:36 AM

I just posted this article by Dr. Mark Hyman onto Facebook from my SF Bay Area celiac network:

Read it! It shows whether or not you have celiac or severe gluten sensitivity, gluten can in fact still be messing quite deteriously with your life.

For naturopaths and doctors who actually are paying attention to this problem with wheat etc., many suggest that simply going off the gluten is the best test, bar none.

I know for me I had mostly gone off it, but did not get the full benefits until I also went off all trace gluten, and also eventually discovered other things I was reacting to too--and began to avoid them.

The thing is to learn to trust your own experience. You know your condition better than anyone else. Don't let others' opinions stop you. Just take the precautions and planning you need to take care of yourself to be healthy. For those who insist you eat the wrong things, perhaps its time to consider spend less time with them since obviously your well being may, in all probability, not be on their true agenda. And by all means stick to your guns.

  • 2

#773159 1 Year Since My Trip To Er

Posted by on 13 February 2012 - 11:31 AM

Thanks Bea for your response. I did try the dandelion tea as you had suggested before and it made my stomach feel sick. I tried it several times to make sure and it did the same every time. I tried Milk Thistle and did not find a difference in the way I felt. I read about the nettles when you suggested them before but what scared me in my reading was that they are a diuretic for the kidneys and I have to keep my kidneys hydrated because of the existing lodged stones but perhaps I can see what would happen. I'll stop the cranberry tabs, maybe they are doing more harm than good.

Thanks on the tip for the garlic for the faciitis, I will give that a try. Let me ask you a weird question, if you don't mind. I have always been an active person....hiking, biking, jogging, etc. I have continued to walk on my tredmill but took my dogs for a 1 hour walk ovr a week ago....something that used to be common and frequent but had done so in awhile. The next day I could hardly stand. My hip joints and low back were killing me. This past weekend we went to a social and after 2 hours my feet were hurting, felt numb up past my ankle, we had to leave. Next day I was in pain. I drove this weekend, 30 minutes in the car and my left foot fell asleep. My hands have been going numb while I sleep. Could this all be due to cutting back on my B complex?

I will try the epsom salt soak on my scalp. I have tried everything else it seems and nothing has made the difference. I will also tighten up on my salicylates and see if that makes a difference. I have been avoiding them but allowing an orange every other day, maybe my system just can't take it.

Thank you for the advise. I really do appreciate it.

Hi Caroline,

You remind me of me so very much. I know it must be frightening going through all this. It was for me. However you will get passed it. You will get passed all of this. There are answers out there. Just be prepared to have to be alert for signals and be willing to follow up hunches. Going off the oranges is likely imperative. They are very high in salicylates. And can be quite hard on afflicted kidneys.

So yes the lack of sufficient B complex could be negatively impacting your joints. It is possible. Whether they are affecting your joints or not, you probably still need them given everything. The co-enzyme ones are the best since they will not overload your already overworked liver.

Even more likely though you are low on minerals. If you can't take regular ones due to your kidney stone situation, consider taking the homeopathic cell salts.

It is also possible you are eating/ingesting something that is causing you a problem.

Given your situation I would metaphorically run to see a good homeopath. However given your past difficulties with alternative practitioners I can understand your hesitation. It is however the logical thing to do since your system is so very sensitive to other things. In Germany they have some very good practitioners. There is likely to be someone there who can help you. Meanwhile you can start educating yourself concerning the subject and perhaps even get some homeopathics that could help your kidneys as I suggested elsewhere.

Meanwhile I would also invest in some good acupressure books and administer myself and/or have hubby or ?? someone help on the afflicted points. Heat helps too.

When I am really under it and hurting I take a teaspoon of baking soda in a glass of water, chased by more water. Meanwhile day to day the MSM and the epsom salt baths really seems to help. I also take some magnesium citrate daily, though as I have more epsom salt baths, I often have to back off on the amount of magnesium I take by mouth.

And yes, if you aren't doing it already, take hot epsom salt baths. The days you don't want to do that, give your feet a good soak in epsom salts and water. Start slow on the amount of epsom salts however. You might react initially if you are salicylate sensitive. Reason being your body unloads a lot at once which can be too much. So some just start with a couple of tablespoons in a bath, and then gradually work their way up. I started with two small handfuls--after having a reaction to using a cup of epsom salts. I had nausea etc. I now do 8 handfuls of epsom salts--but have been doing this for some time now. As said I didn't start with that.

Your skin conditions meanwhile indicate to me that your liver is under it. Thus staying off the medium and high sals for now is probably a good idea. Also staying off heavy animal fat may be important. Actually, its probably not the best thing for you to be eating a lot of animal protein either right now given your kidney distress when I stop and think about it. Fish is better--though check this out and see if you are ready for it or not. The azuki beans (adzuki or whatever) could really help you. Mung bean sprouts might also be a good idea. Maybe home made low fat (or no fat) yogurt too?? Think outside of the box is my best advice. Last time my kidneys were all inflamed and had a bad infection I lived on home made plain yogurt and salad. Now I would use iceburg lettuce for the lettuce part. And no cukes due to their high sals content. Now I would probably blend parsley, celery and iceburg lettuce together for smoothies. Barring the parsley if it is too high in oxylates for you, I would probably use the mung bean sprouts.

Meanwhile keep me posted. I am glad to help. Your situation mirrors mine in many ways. I am in fact thinking of starting a blog about health, including the combined effects of salicylate and gluten sensitivity. Its highly doubtful we are the only ones affected like this.

  • 1

#772952 1 Year Since My Trip To Er

Posted by on 12 February 2012 - 01:49 PM

Thank you Bea, you have been a great help to me! I do hope one day everything will settle down!

Does it ever settle down? And why all the issues? I got my canker sores to go away using 1000 mg L-lysine daily. Then I had problems with my foot and was diagnosed with planter's faciitis. I have any appt w/derm for my burning scalp which I have tried all kinds of products for. Doc is wanting to put me on meds for Raynaud's syndrome which I may finally relent to. And the issues I have been fighting with my kidneys lately was an infection so I am now on two anibiotics to try and fight this. It's exhausting!

Bea, I read in another reply you mentioned something about high blood sugar and why celiacs have this problem at times. I would be interested in more info on this. I had problems with high blood sugar with my last child. Lately I have been having that same naseated stomach feeling, light headed at time. I have been tested for diabetes at least 2 times in the last year and results are negative but I wonder if there is something going on. I have 2 symptoms left yet that docs don't have an answer for.....my blurred vision (my other vision issues went away with cod liver oil) and the buzzing in my ears. I have wondered if they all could be related to my blood sugar.

Dear AVR,

I just got a copy of Sharla Race's Salicylate Handbook. I think just maybe your days of being salicylate sensitive may still be here, just showing itself a little differently perhaps? Sharla Race has a website at www.foodcanmakeyouill.co.uk

I too had plantar fascitis. How I got rid of it was stop using the salicylate treatment on my foot which made me much worse plus I used thin sliced garlic I taped to the affected area of my foot. It was like a miracle--it just went away. Try it--it may or may not work for you. But I am thinking it will likely help. If you are salicylate sensitive the usual salicylate treatments will just backfire.

I would also strongly consider looking into homeopathics for helping out your kidneys.

Alternatively, if you find you can tolerate it, try using dandelion root to help out your liver and kidneys. It is healing for both and generally regarded as being gentle--and whereas it does have salicylates it is only at a low/moderate level. It helps you urinate more while putting the potassium back in. It often can be tolerated at least for a while if you have salicylate sensitivity.

Other similar remedies are nettles and uva ursi. The last of which I have used off and on for years. Uva ursi creates an environment not conducive for the microbes to stick in the urinary tract. I found it to be quite effective, whereas drinking cranberry juice was not. Now I have learned cranberries are very high in salicylates. Whether uva ursi is high in salicylates or not I don't know. I am hoping there is a homeopathic equivalent for either that or cleavers, both of which are excellent against bladder and kidney disorders. If not, I am betting some homeopath could make it.

The nettles meanwhile are sometimes considered an antidote for salicylate sensitivity. They are good for the liver as well as a good diuretic for the kidneys. I have experimented with them a bit, but can't say for sure. They haven't seemed to harm me in any case. If my kidneys were acting up I might consider using them more. Again I think there is a homeopathic equivalent. When I have looked it up sufficiently I will pass the info on to you.

Again, overall it may still be important for you to avoid the salicylates. The spices might not be giving you hives or whatever symptoms they gave you before, however they may be affecting your liver and kidneys. I could be wrong, but I think its worth investigating. It is listed as one of the problems one can get from salicylate sensitivity. There are also related sensitivities for some people connected with it like oxylates for instance and BHA and BHT, tartrazine, NSAIDS etc.

High salicylates are in many cleaners and body lotions, as well as shampoos and fragrances. Coconut and its derivatives are hard to avoid, however it is possible. I make sure there are no scents in anything I use. Your burning scalp could be caused by something like this. Taking the epsom salt baths and soaking my head in it for at least part of the time really helps. I also now always wash my hair first in the sink--like my mother and grandmother always did. Now I finally have figured out why--the less soap or detergent the better.

Looking at various products as well as food and chemical lists as well as participating in the forum at http://salicylatesensitivity.com just might help you.

Before you decide to try out the various other treatments, consider taking Nattokinase capsules. It is derived from the Japanese dish Natto, fermented soybeans. The samurai discovered the healing properties of Natto over 1000 years ago, given all their battle scars etc. It does not contain salicylates. It has a well researched track record of reducing inflammation, clearing platelate aggregation, and clearing scar tissue. It is very good for the blood vessels and heart.

There are no negative side effects that I have read about unless you take too much and/or you are a bleeder, which it sounds like you are not. If you take natto cakes however make sure they don't have wheat in them. It seems the Japanese now often put wheat in the Natto as a binder. I also hear it is quite smelly and thus an acquired taste. I am considering sending off for the bacillus however and try making my own, just to see. It is much cheaper to make than to buy the nattokinase--though if you order nattokinase online you can get it for about half off the shelf price.

I would also consider taking co-enzyme B vitamin complex (best taken on an empty stomach--I take mine with the nattokinase actually) since its likely you may be having difficulty absorbing B vitamins due to damaged villi, which could add to your problems with your circulation and heart issues--it did for me at any rate. My heart rattled around after any stress, physical or emotional. After two weeks of these co-enzyme B's the rattling went away. I get mine from Country Life.

And yes, when I stop and think about it, my fingers and toes used to turn white and then blue from the cold--and then itchy red afterwards. Since I was a little kid in fact. They don't do that any more thanks to the nattokinase and the co-enzyme B's plus staying off the salicylates and wheat family gluten. I nevertheless still try to make a practice of dressing warmly. Nearly daily walks, or doing modified push ups and sit ups etc., I am certain also help.

I take silica drops which helps my joints be strong enough to do the push ups and sit ups and light hand weights. That and my other minerals of course, like liquid trace minerals, magnesium, zinc and even MSM since I need the sulpher. The sulphation pathway is often messed up for those who have salicylate sensitivity.

I also have to take E-zorb for my calcium since other forms of calicium are still not absorbable enough for me. I go off my various minerals once in a while to see if I still need them. And although I can do it for a little longer than I used to, it appears I still do need them or I get joint problems and weak fingernails etc. all over again.

Of course my case of mineral malabsorption is worse than many. I believe the reason is due to extreme damage to the villi in my intestines due to the effects of rampant salicylate sensitivity coupled with untreated gluten sensitivity for a great deal of my life.

The damaged villi can also create problems with the blood sugar, like what you were noting. For me its more problems with hypoglycemia. Thus for a whole variety of reasons, doing things to create a better intestinal environment for the villi is imperative for me, and I bet it may be the case for many here who have celiac, and certainly for those who have both celiac or severe gluten sensitivity and salicylate sensitivity.

The damaged villi then also set up a stressful situation for the nerves since fat absorption is the first thing that is affected due to the blunted villi. Then the undigested fat along with undigested proteins and carbs. go into the blood stream where it is recognized by the body as being foreign invaders. This then causes an inflammatory response. It also in turn tends to clog up the liver, which turns the fats into cholesterol balls which then clog up the gall bladder (as "gall stones"), which then becomes too clogged do its job of releasing bile.

Fortunately I have discovered eating azuki beans helps dissolve the excess cholesterol and thus the liver and gall stones. Yay!! Plus its far more digestible than other beans. And like other beans however it is excellent for modulating the blood sugar, creating a calming effect too.

I thus am not eating heavy animal fats any more since my gall bladder and liver were under it this last fall. I can now eat chicken--without the fat or ski, though I make a practice of not eating it every day. However I mostly avoid eggs except in the occasional baked rice bread. And at this point I won't touch either pork or beef. I eat some fish and beans as well as the yogurt instead.

So yes, I am experimenting with making and eating home made whey infused sauerkraut and home made yogurt (from which I get the whey by the way) as well as gluten free miso. So far so good. Actually the results have been excellent so far, as well as very tasty.

Not everyone who has salicylate sensitivity can tolerate these kinds of amines, however I seem to be able to as long as the lacto bacilli induces the process. Nevertheless, I do not tolerate cheese or aged meat.

Thus far I have not tolerated kefir, however I am willing to give it a try again one of these days. My understanding now is that sometimes one's gut has to slowly heal and transition to be able to handle these various good bacteria.

I cross my fingers. And also hope some of this is of some help to you. And that I haven't confused you too awfully from too much material. However from my point of view it is all very much inter-related.

  • 1

#772408 1 Year Since My Trip To Er

Posted by on 10 February 2012 - 10:44 AM

Congratulations AVR. I know you have struggled. So good to hear you can tolerate eating some spices now too! And that many of your neuro problems are subsiding, amongst others. Its not ended, but sounds like you are definitely on the path towards excellent health!

  • 1

#771723 Bloooooooated

Posted by on 07 February 2012 - 09:24 PM

Agh. I got glutened last Friday by a restaurant. I had thought I was doing better, but I think I slipped up at work and re-glutened myself by accidental cross contamination of my lunch in the company microwave. The timing for this afternoon's new round of reflux and stomach pain would fit that scenario. Now my stomach is swollen and blah I feel like crap. Except for the ravenous hunger pangs that have set in.

The bloating, gas, and massive appetite had vanished once I went gluten free about a year ago. I think I had forgotten how miserable I felt back then!

Sorry to hear you are feeling so miserable. Both my bf and I are sensitive to microwaves used by others for their gluteny items.

I have found sometimes a homeopathic will help. They have several varieties for bloating and stomach pain. If you can handle the aspirin and mint, Pepto Bismol can provide relief.

My home made sauerkraut seems to help too, as does home made plain yogurt. Also eating blended veggies helps, like blended combo of parsley, celery and lettuce.

Good luck! Am betting you will be feeling better soon.
  • -1

#762137 Liver Detox Plan

Posted by on 03 January 2012 - 10:51 PM

Ok. Cut a long story short. I've started to have gallbladder trouble. Serious issues with fatty foods ( left me ill for the Xmas hols ), and am due for an ultrasound soonish. However I've had more than my share of medical procedures this last year so I want to try and nip anything potentially serious in the bud.

I was and remain skeptical, but am doing the Liver Detox Plan by Xandria Williams as she /seems/ credible to me. I've been on it for a week now, and am finding it quite remarkable. I appear to be losing a whole bunch of fat rapidly which I struggled to lose despite some serious exercise earlier this year. So far 5 lbs in the last 4 days.

According to the book, toxins which have been stored away in fat can get released as you finally metabolise it after all those years of lugging it around. A google around leads to some articles, and Wikipedia entries which seem to back this up too ( look up toxins and adipose tissues ).

Now here's the kicker... I feel glutened. I have total control over my diet right now. Cooking from scratch using the simplest of ingredients. No vinegars, only fish and vegetables plus a little rice. All my supplements are lactose, dairy, soya and gluten free. I have never been more in tune with what I'm eating.

So why do I have the unmistakable sensation of being glutened? Muscle aches, neuropathy are all present. Stomach issues too, but that could simply be the diet change. Is it really possible that I could be re-releasing gluten into my system? Albeit to a lesser extent? Has anyone else done this?

Dear Noodle,

I feel for your condition and concern and in fact I am glad you started this discussion. Most intimately in fact since I am going through my own liver and gall bladder detox. Mine is self administered however. I do have an old book of Xandria's on detoxing, and it looks pretty good. I agree with you about it being best in these matters not to just go the AMA way where they are likely to just yank our your gall bladder.

I looked at her website and my big concern here is, if I am right, at least seemingly she is emphasizing laxatives: i.e. the cascara sagrada. Maybe you need it, maybe not. It might be a bit much. Definitely would cause the big D!

Also all those toxins out for the first time rather quickly might be a bit much. I suggest possibly going a little more slowly. I have myself years ago suffered from going on a couple of 3 day juice fasts and lost half my right kidney due to inflammation which quickly became nephritis.

Mind you this was years and years ago. I was still unknowledgeable about gluten even though I did know something about herbs soon after in any case. Which is what stopped the progression of nephritis. The docs were going to keep me on antibiotics forever due to my continued recurrence with kidney infections. We did not know the gluten was causing me spontaneous breakdown of my kidneys. We also did not know it was also due to all the bad chemicals I had been exposed to working for my dad on his rental houses as I grew up and after wards in grad school. The herbs thus saved my life, dandelion in particular since its good for both the liver and the kidneys and very detoxing in a gentle but effective way. Marshmallow root was also a big help as was uva ursi. I still use them in fact, except now for the uva ursi due to my salicylate sensitivitiy (SS). Thankfully there are homeopathics that now work for me if I need them....

Later by the time I was 30 I finally figured out I was sensitive to the gluten family. Of celiac I still did not have a clue despite the fact my mother should have said something given I was diagnosed for it when I was an infant. But that was then, eh? People thought you grew out of it and she did not want to "alarm me".

The problem I am having now with my gall bladder seems actually due to eating a diet richer in eggs and meat fat than I had done in a very long time before this last year (since I was trying to build u p my myelin sheath on my nerves). Plus of course I did not realize I was playing 'Russian Roulette with my liver as a consequence.

I was off the detox herbs due to my newly discovered salicylate sensitivity (SS). With that sensitivity the received wisdom is to stay off herbs. However it seems in actual fact that certain of the liver supporting detox herbs are an antidote to the SS. It makes sense since the SS condition is extremely hard on the liver. With it one is going around being toxified from aspirin like substances from a normal diet and usual spices and herbs and many vegetables as well as all nuts. Its hard to stay away completely from it.

Meanwhile here are you. I think it might be wise to consult with a naturopath or an experienced herbalist so you don't overload yourself by going about things too fast. Or call up Xandria's outfit for advice.

Xandria's method may seem to be natural and gradual to most people, but with celiac and related conditions, sometimes our built up toxicity levels need to be handled more gently and slowly. The thing is liver and gall bladder problems are pandemic for us. Its due to the damaged villi not processing fat appropriately, especially cholesterol.

I think one of the key things is to support the villi with things that heal it like the fibronyltic enzymes as well as the marshmallow root. Look it up--I have discussed it here elsewhere on celiac.com many times.

I am personally using dandelion root again as well as the marshmallow root alternating with barberry root for a couple of days, then Oregon Grape root, and finally nettles. This gives my body a chance to recover from the berberine in the barberry and grape root so I don't have the big D all the time.

Unless you are really blocked up, I think taking cascara sagrada on top of this would be too much and really unnecessary since all of the above listed herbs I take are mildly laxative except for the marshmallow root, which is anti inflammatory and soothing to the villi. For me in fact I don't know what I would do if I took the cascara too since already I have to be careful of the barberry root or Oregon grape root, both of which can cause diarrhea if you take too much.

All of these herbs too are good at reducing the cholesterol stored in your liver and bile. In fact they help with peristalsis by releasing the bile into your intestines, where its needed so you can process various fat soluble vitamins amongst other things.

What I notice for me is that I still get some D with this right now due to the gallbladder condition. Thus I now sometimes see the resultant gall stones on occasion come out in my stools. This is I guess is what should be happening. This morning I woke up feeling a lot clearer as a result of some activity that way last night. After a month and a half the results are starting to accumulate. I do think I will be keeping my gall bladder after all...

You can also use apple cider vinegar in water or fresh lemon or grapefruit juice similarly. They will stimulate the bile and reduce the size of the stones as well as move them along. The herbs though seem to break the cholesterol down more however. There are also some homeopathics that do the same thing.

Some use epsom salts if the bile ducts feel like they are blocked. It opens them up. Definitely you get the big D then! I haven't had to do that, but some rely on it. For me its good to know that if I need it I can use it. Meanwhile I do use some magnesium citrate, a close relative just to keep sane du to my SS condition. I have to watch how much I take so I again don't get diarrhea or too much of it... I also take epsom salt baths. They are great for helping your body to detox through the skin--and help me with my salicylate problem that affects my nerves, skin and liver so strongly.

Due to discomfort otherwise from my body, like you I am also staying off all eggs, meats and animal fats for now except for trout and shrimp. I only use fish oil and safflower oil for my oil these days. Many use olive oil (high in salicylates so a no no for me) with or without the apple cider vinegar (with the "mother"--i.e., alive) and/or lemon juice.

I am now also making home made organic 1% yogurt (fermented 24 hours to get rid of all the lactose). Again I have to keep the fat down for now. I don't imagine I will have to do this forever but my body tells me when I eat the wrong thing by getting a headache or shoulder pain. Initially I had pain in my right high side of my intestines under my nipple and below the last rib. This quickly went away after I changed my diet and started to use my old detox herbs.

My plan is to start making organic sauerkraut in a day or two. I am noticing eating live foods is helping me digest the beans I now need to eat as well as soaking the beans 2 days and cooking the hell out of them with several changes of water initially. I don't really want to eat much in the way of soy unless it is very fermented due to its poor track record on our nervous system and hormones not to speak of being cancer inducing. The jproblem with eating too much fish is that it is no longer very clean these days due to polluted waters etc.

I am also finding that the addition of enzymes is also helping. I take one by jarrow that features porcine lipase with alpha galactidase--that helps one digest beans better as well as starch, protein etc.

I notice my detox herbs are helping me to digest my food better in general. I saw one naturopathic site the other day that said that dandelion root and leaves help the body produce more HCL in the stomach which then also somehow leads to more bile produced in the liver and gall bladder which then releases into the intestines for better peristalsis--as well as breaking down the cholesterol better.

Hope this helps. Do let us know what symptoms you are actually having...and what herbs you are taking.
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#759643 Help Me Please!

Posted by on 25 December 2011 - 10:58 AM

You should also contact Entero labs and get a stool based test concerning gluten intolerance. It often does not show in blood tests.

The bottom line however is to just go off the gluten completely and see if you do better or not. Obviously nothing else is working. Tests don't always show if one is severely gluten intolerant. Celiac has been given a narrow definition that does not fit everyone that needs to be off gluten. Dr. Vicky Petersen is a good U-tube resource by the way.

Going off gluten means going off all trace gluten too, even your lipsticks and chapsticks and shampoo and body lotions often have gluten in them. Check out the list of hidden gluten ingredients here on celiac.com. Avoid using wooden chopping boards, wooden utensils, wooden bowls as well as fine mesh metal collanders etc. that have been used with gluten, old toasters etc. Your oven is also suspect assuming you have done any glutenous baking. You can put it and any iron pots in it for an hour on the self cleaning cycle to get rid of the gluten that is baked in. Or use a new gluten free toaster oven. Basically you have to clean you kitchen and at least have a safe gluten free area for your stuff that you use.

What many do here is to just eat things like chicken and brown rice and veggies at first--all cooked from scratch to see how they do, as well as to heal since so many foods have trace amounts of gluten in them--often even things that claim to be gluten free. Be careful too of spices. Its best to buy them whole--like fresh ginger -- until you find a truly gluten free source.

Good luck! Even though I don't wish gluten intolerance on anyone, its better to find the hidden cause of all your suffering so it can stop and you can begin to live your life again!

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#752801 Wheat Belly

Posted by on 01 December 2011 - 11:17 PM

Received a wonderful article from a Celiac friend. Was reading it to my husband who is asthmatic, was recently tested for diabetes which runs in his family, has weight issues and yes, the belly. His response to the article, "If you beleive everything you read on the Internet you'd be eating nothing but carrots." Can you believe? The denial for people is just amazing. I am living proof of what wheat can do to you, my own husband has seen with his very own eyes the improvement I have made and yet this reaction, just incredible!


Yes I know it is incredible. Just remember the gliadin in the gluten has opiates in it. It is addictive. Most folks don't want to give up their comfort food nor do they want to deal with the social restrictions going out to eat etc. Think about it. This is why. It is hard to break someone's comfort zone unless already they are as uncomfortable with gluten as you no doubt were and as I certainly was... So the truth is is that for some of us who have had it bad its in a way easier for us to change than for someone that has the effects more generally and thus insidiously since they don't see the direct cause and effect. They'd rather take their medications. Way easier. Its hard when you love that someone and you know their health would otherwise improve but they don't want to. They have made their peace with their condition... The truth is you have to honor that decision. The other truth however is that they need to not expose you to getting CC'd at the same time. A tricky business.
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#741863 The What's For Dinner Tonight Chat

Posted by on 25 October 2011 - 09:22 PM

Tonight's menu: Pork chops with apples and honey glaze, baked potato with broccoli
(Yep, more potatoes!)

"She didn't realize that an oven previously used to bake gluten pies etc. was a big no no for us"

What? My oven will CC me???? I sure hope not, it's baking my pork chops right now. Do you mean she used a TOASTER oven, with a crumby tray? Please explain for the newbie..... :)

Yes, it will gluten you if you share an oven with someone that either currently uses it for gluten items, or if it was previously used for them in the past and hasn't been de-glutened. Does not matter what type of oven it is, it needs to be gluten free--even a microwave. Otherwise you are being exposed to gluten circulating in the hot oven air. If it wasn't new when you got it, you need to put it through the self cleaning cycle.

Am not sure if the old fashioned method of using lye to get off the old baked on stuff in an oven will work for a gas oven or an electric oven that doesn't have a self cleaning cycle (or one that works anyway). Be good to know this! Help me with this somebody!

Otherwise, I suggest you get a dedicated gluten-free toaster oven to bake your food (and/or a new microwave), or buy a new oven.

Gluten does not "die" unless it has been charred by 600 degree Farenheit heat for a while... At first you might not notice the effects of constant exposure to CC (cross contamination) from this or other sources, but believe me it takes its toll on your health. Far better to get rid of the source.
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#741569 Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies

Posted by on 24 October 2011 - 08:48 PM

It seems that Purkinje cells develop prenatally, and continue to generate their elaborate branching patterns after birth and during very young childhood (in humans I would guess 0-1 yrs or even less, but that's just a guess.) They seem to lose their ability to "bounce back" or heal from an injury pretty soon after that, but most of the developmental models have been done on rats and mice, for pretty obvious reasons (much easier to do brain surgery on a mouse than a little kid!).

A lot of the research on human Purkinje cells and children seems to be in the area of autism research. Which is not to scare you. Simply to say that neurologists have noticed a very atypical Purkinje cell appearance in Autistic children, and it has been suggested as one hypothetical cause.

Healing from the ataxias is, I personally think very possible, the younger you are and the earlier you were diagnosed from age of illness onset. The human brain is very 'plastic' or malleable in children, and parts of the brain that were injured can be retrained, or functions can be ascribed to new areas of the brain.

I think you are totally following the right steps by insisting on occupational therapy for your child. You may also want to look into safe supplementation with vitamins and minerals that are age appropriate for a child. I was struck by one neurologist's quote- fundamentally damage to the Purkinje cells results in dopamine dysfunction at the cell signaling level.

In which case, I would pursue supplements like fish oil (increases neuronal permeability), magnesium (cofactor for dopamine manufacture), folic acid, iron (another cofactor), B vitamins- B6 and B12, and also 5-hydroxytryptophan. The last is a precursor to dopamine.

Remember, not all the Purkinje cells can be gone, except maybe in an end stage celiac brain. That would probably look from the outside very much like Alzheimer's, MS, maybe Parkinson's or one of the other dementias (why ataxia seems to get worse and worse as you get older- it's cumulative damage).That is absolutely catastrophic and fatal. My supposition of why ataxic healing is so slow, is that we are training our Purkinje cells to do more with fewer helpers.

Thank you Riss for your informed reply. I do think however given my own experience and that of others that one can and does heal even if one is a lot older--although I agree, it is common sense that the younger one addresses these issues, the easier its got to be.

Nevertheless, in counterpoint, my boyfriend is a good example. I could say for myself, yes for years I have been taking very good supplements, including fish oil. However my bf's supplements were questionable at best though he did take the basic B vitamins and exercised like crazy since it made him feel better.

Meanwhile though there is other research that shows that even oldsters can actually keep on producing fresh brain cells if they keep using their minds. Just like in muscle, with the brain's neurons, use it or lose it.

The old myth that it is all a downhill slide since age 25 is just exactly that, a myth. As well as a cultural tendency many have to start sliding mentally after they leave school--and start abusing their bodies which in turn adversely affects the brain.

I also hear that after age 28 we stop producing so many enzymes--so taking enzymes thereafter seems to be a very good idea to help heal and keep one young, brain wise as well as in every other aspect of our health--in addition to the supplements you mentioned, and again, lots of exercize.
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