Gluten: really is that bad
Yesterday, I walked past the bread display at Trader Joe’s three times, breathing deeply. It smelled good, but not as good as I remembered. That was odd.
As I left the store about ten minutes later, my face turned beet-red and puffed up, my brain went into a deep white fog, colors faded to pastels, and the pain left my arms and foot briefly to return, five minutes later, to every joint in my body.
I was in full neurological gluten reaction. From inhaling near a bread display!
I did that in the first place because I just could not believe I was that sensitive to something I’ve eaten – and really enjoyed – all my life until last summer.
I know there’s a difference between the kind of food sensitivity where, if you avoid that food most of the time, you can tolerate a little now and then with no trouble; it’s about keeping the contact down below a certain minimum. Then there are the sensitivities where, if you eat a bit on a regular basis, your body retains an ability to deal with it and you don’t get a reaction (vegetarians who go back to eating meat are familiar with this – it takes awhile for the body to readjust.) And then there are the sensitivities that amount to true allergies, where any contact causes a reaction and the reaction can get intense enough to create a crisis.
That was an intense reaction. I’m not interested in seeing how much more my face can inflate.
It’s true that I used to eat wheat regularly and experienced nothing as dramatic. Would it be less dramatic if I ate a little on a regular basis?
Considering how quickly my health was slipping while I was eating gluten, and the fact that I continue to get sicker but I appreciate that it’s at a slower rate, I don’t see any real point in making the experiment.
Moreover, the literature on gluten allergies does not support that. The science indicates that, if your body has trouble with that particular protein, then the further you can stay from it, the better off you are.
I called my acupuncturonaturohomeopath. He gave me a recipe for gluten exposure, which is mostly about buffering the heck out of the molecule. I cobbled together a gluten exposure kit from my talk with him and my nursing background.
I turned normal Isy color almost immediately and then had a great, rippling burp every 10 minutes for about half an hour – feeling considerably more human each time. A day later, I’m not quite up to where I was before exposing myself, but am LOTS better than I’d expect to be, without that treatment. A reaction like that usually puts me down & out for about three days. Drooling Barbie doll. It’s awful.
Why so little Vitamin C? Doesn't your body just wash away the excess?
Actually, if you take in excess Vitamin C, your body washes away all of it that it can still get hold of. 500 mg seems to be the sweet spot of maximum absorption and minimum waste. I used to megadose it, but with a frail system, that's intolerable. 500 mg lets me take in and use every bit of it. If I need more, I just take it 3 times a day instead of twice.
Meditation and Reiki: really is that good
Today, I had to test myself on the value of my mental disciplines. I’m not sure why I’m testing myself so much; I doubt myself, perhaps. There is something surreal about what this disease does to you; I suppose the occasional reality check makes sense.
I didn’t meditate last night or this morning. The emotional surges are quite noticeable, but I’m well aware that they are what they are, which is not me.
After my gluten experiment, I feel no need to push this farther.
I’m now perfectly convinced that my relentless internal work does keep the rudder in line, the engine tuned, the brake pads operational, etc. Basically, it keeps CRPS from taking over my brain.
Dammit. I wanted to be normal again. Though, to quote the fabulous Stockard Channing in Practical Magic, “Darling, when are you going to learn that being normal is not a virtue? It rather denotes a lack of ambition!”
Yesterday, I walked past the bread display at Trader Joe’s three times, breathing deeply. It smelled good, but not as good as I remembered. That was odd.
As I left the store about ten minutes later, my face turned beet-red and puffed up, my brain went into a deep white fog, colors faded to pastels, and the pain left my arms and foot briefly to return, five minutes later, to every joint in my body.
I was in full neurological gluten reaction. From inhaling near a bread display!
I did that in the first place because I just could not believe I was that sensitive to something I’ve eaten – and really enjoyed – all my life until last summer.
I know there’s a difference between the kind of food sensitivity where, if you avoid that food most of the time, you can tolerate a little now and then with no trouble; it’s about keeping the contact down below a certain minimum. Then there are the sensitivities where, if you eat a bit on a regular basis, your body retains an ability to deal with it and you don’t get a reaction (vegetarians who go back to eating meat are familiar with this – it takes awhile for the body to readjust.) And then there are the sensitivities that amount to true allergies, where any contact causes a reaction and the reaction can get intense enough to create a crisis.
That was an intense reaction. I’m not interested in seeing how much more my face can inflate.
It’s true that I used to eat wheat regularly and experienced nothing as dramatic. Would it be less dramatic if I ate a little on a regular basis?
Considering how quickly my health was slipping while I was eating gluten, and the fact that I continue to get sicker but I appreciate that it’s at a slower rate, I don’t see any real point in making the experiment.
Moreover, the literature on gluten allergies does not support that. The science indicates that, if your body has trouble with that particular protein, then the further you can stay from it, the better off you are.
I called my acupuncturonaturohomeopath. He gave me a recipe for gluten exposure, which is mostly about buffering the heck out of the molecule. I cobbled together a gluten exposure kit from my talk with him and my nursing background.
Gluten Exposure Kit:Keep it in snack-baggies in key places: glove compartment, purse, first aid kit, desk drawer.
- 2 Alka Seltzer tablets,
- 4 Tums,
- 500 mg body-friendly Vitamin C (not more),
- 10-15 capsules of activated carbon, to soak up any toxins in the gut. (More for eating it by accident, but it can’t hurt. I think it cleared a few things up, in fact.)
Just add water! And plenty of it.
I turned normal Isy color almost immediately and then had a great, rippling burp every 10 minutes for about half an hour – feeling considerably more human each time. A day later, I’m not quite up to where I was before exposing myself, but am LOTS better than I’d expect to be, without that treatment. A reaction like that usually puts me down & out for about three days. Drooling Barbie doll. It’s awful.
Why so little Vitamin C? Doesn't your body just wash away the excess?
Actually, if you take in excess Vitamin C, your body washes away all of it that it can still get hold of. 500 mg seems to be the sweet spot of maximum absorption and minimum waste. I used to megadose it, but with a frail system, that's intolerable. 500 mg lets me take in and use every bit of it. If I need more, I just take it 3 times a day instead of twice.
Meditation and Reiki: really is that good
Today, I had to test myself on the value of my mental disciplines. I’m not sure why I’m testing myself so much; I doubt myself, perhaps. There is something surreal about what this disease does to you; I suppose the occasional reality check makes sense.
I didn’t meditate last night or this morning. The emotional surges are quite noticeable, but I’m well aware that they are what they are, which is not me.
After my gluten experiment, I feel no need to push this farther.
I’m now perfectly convinced that my relentless internal work does keep the rudder in line, the engine tuned, the brake pads operational, etc. Basically, it keeps CRPS from taking over my brain.
Dammit. I wanted to be normal again. Though, to quote the fabulous Stockard Channing in Practical Magic, “Darling, when are you going to learn that being normal is not a virtue? It rather denotes a lack of ambition!”
Posts
I can relate! I have not seen a movie in a theatre for almost 30 years because I am so allergic to corn that the inhaled protien molecules from the smell of popcorn (which are just the right size to enter the bloodstream through the nasal membrane) cause anaphylaxis for me. I knew that was also true for seafood, peanuts and a few other protiens, but I guess I'll add wheat (gluten) to that list. More wonders of the human body, eh? In what universe was that an evolutionary advantage??
ReplyDeleteGlad you got some remedies to help! I generally have to use epinepherine, but once that's done what it can do, there's the ongoing aftermath, which as you say, ain't fun... I use some similar tools. A mix of ascorbic acid powder (from tapioca as most vit c is derived from corn) with potasium and sodium bicarbonate works similarlly to the tums alkaselser mix.
And I too use a number of alternative protcols to help avoid that aftermath being too prolonged or too vigorous. There are a number of great self help protocols in Donna Eden's "Energy Medicine". Most are derived from Traditional Chinese Medicine practices, but she has put these together into usable routines for all kinds of bodilly high jinks. A great tool. We never left home without a copy all the years we were raising two kids who'd got the gift that keeps on giving from their mom (hyper IgE immune dysfunction).... despite which they still love thier old mum and say they'd hate it if I were "normal" (when I occassionally grumble about being such a freak). I love your writing, Isabel! Though I wish you health and healing I hope you never de-evolve into normal!Lili
Your remark pulled my day out of the crapper, Lili :) Thank you!
ReplyDeleteI'd love to know your source for non-corn ascorbic acid. I look for fruit or rosehip based vitamin C. I'll add it to my kit, thanks!
PS I don't think that my being normal has ever been much of an issue, really...
ReplyDeleteHi Ho, Isy! I'm so glad to be "getting to know you" (as much as the venue allows)! You can check with a local compounding pharmacy for non-corn derived vit C (it is sometimes made of beet, sago palm or potato as well) but there is so much ignorance about sourcing, this will only work if your pharmacist is already knowledgeable or open to being educated. Having said this, cultivating a working relationship with a good compounding pharmacist willing to do leg work with manufacturers and get creative with you in meeting your needs can be worth a great deal!
ReplyDeleteBarring that, finding out the straight goods often means going to the manufacturer with questions. After I had an anaphylactic reaction to certified organic grapefruit seed extract (which puzzled me as I tolerate grapefruit and citrus products well as long as there are no pesticide residues) I found out (after considerable effort and persistance to the point of bulldogishness) that as part of the processing, the grapefruit "slurry" is sprayed with vit C (from corn) to stop it from oxidizing. Great!
The product I use and think very highly of is Vitamin C from Tapioca by Ecological Formulas of Concord California. A good source (for Ecological Formulas products and other products that are less toxic/designed for the environmentally hypersensitive is the American Environmental Health Foundation ( http://www.aehf.com/ ) associated with the Environmental Health Centre of Dallas ( http://www.ehcd.com/ ) home of the very brilliant Dr. William Rea, which has some good resources for testing etc.
I looked into vitamin C from Acerola cherry which is supposed to be an awesome anti oxidant as well, but could only find either non organic or certified organic which was sweetened with corn derived manitol... So the Ecological Formulas is probably your best bet. Maybe it's carried locally where you are as well; it's worth checking. Up here in the (Teehee) frozen north it's unavailable so I get it shipped up in kilo containers. Me and my shipments of mysterious white powders! I'm always afraid some overzealous customs uniform will mess around with my shipment while eating corn chips! So far, it's survived border crossings intact...
As for "normal", yeah... as my old hermit friend Hugh says to me, "God no, you're not normal! Still, you may be a freak, but consider the alternative..."
(As long as we can evade those pitchforks and flaming brands!) Lili
Lili, I'm still digesting all this wonderful information. Yum yum!
DeleteI'll look into these a bit more and add them either to the "Pertinent Links" or "Impertinent Links" sections to the right :-)