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yolo

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About yolo

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    Female
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    I am a poet and artist as well as a property manager.
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    San Jose, CA

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About Me

I have had celiac/sprue since I was four months old (when I had "failure to thrive" and stopped growing and developed pneumonia when first introduced to grains), was put in isolation and then diagnosed and on diet for my first four years. I was put back on gluten at age four since, when challenged, I grew. Unfortunately they didn't notice my health went downhill. Nor did they know at the time one never grows out of this condition; it just alters how it shows itself.

It wasn't until spring of 2008 that I discovered what "failure to thrive" indicated, since no one told me it meant one had celiac or that one needed to avoid gluten.

After I was put back on the gluten as an early five year old, I began to have recurring colds and flu and bronchitis, gum boils, constant mucous in my throat and tongue, saw and heard people who weren't there on occasion, trouble sleeping, aching feet and calves. I was basically just "out of it" constantly despite being relatively intelligent though unable to do certain things consistently. I was always spacing out like some old person. I had to rely on habits and retracing my steps constantly. I used to peel my fingernails and always had hair that was straight and fell out in my comb. As a young adult I had terrible skin with small pimples all over my back and buttocks and in my hair and chest. I had a kind of greasy eczema in my scalp and small warts on my joints from being out in the sun.

At age 23 my right kidney started to degenerate with recurring inflammation, infections and scarring until I investigated possible allergies. Soon I discovered that citrus and alcohol were out as well as wheat and rye and soon barley and oats. However I thought it was just an allergy and had small exposures to gluten all the time. The colds and flu and chronic phlegm and tiredness thus continued despite heroic and at least semi successful treatment with herbs. Eventually I also developed joint pain and a racing heart. I started getting osteoporosis in my elbows and neck. Nevertheless the herbs and basic diet changes helped my skin look a lot better and got rid of the tiny flat warts I used to get on my joints after exposure to the sun.

After I had my silver amalgams removed at age 40 and was mostly on diet (though I didn't know its true implications nor was I strict about it since I thought I just had allergies), I discovered I had actually learned and retained an understanding of Spanish 20 years previous (I could suddenly read a Spanish newspaper)even though it had appeared I could never really learn it when I was younger. I also discovered (in a pinch) that I had actually learned how to do a tuneup on my truck despite my brother having tried to pound it in to "dumb me" also 20 years earlier. Around the same time I found I was handy at making tables and doing repairs despite being all thumbs as a child. Amazing! The fog had started to lift!

In 2006 I discovered co-enzyme B vitamins really helped me. They made it so my heart stopped racing in the middle of the night or upon walking up a hill. My doctor told me I needed the B-1 especially to help digest carbohydrates and proteins, as well as for good nerve, brain and heart function. Apparently before I started taking these special B vitamins my myelin sheath (the covering on the nerves) was down to 50%.

I also found out about Chinese calcium E-zorb made from sea vegetables -- a calcium that I can actually absorb. Finally, after three years on E-zorb and my gluten free diet, I didn't seem to need it so much. However after re-exposure to trace gluten while taking care of my mother and brother for a few mnths last year, my condition reversed and I have to take the E-zorb again. I also developed more acute sensitivity to gluten. Sheesh. I hope that soon will change again. Even so, I am better overall compared to when I started going off gluten.

The other big factor is that I also started and continue to take silica drops. The silica help both with my formerly weak tendons and osteoporosis! Without it my neck, elbows and feet hurt and I cannot do much in the way of exercise; with it plus with normal zinc, mag. and E-zorb calcium and liquid trace minerals, I can go for long walks each day and do modified sit ups and push ups as well as lift light weights--all impossible previously without hurting myself.

Fall of 2007 I discovered I needed to avoid all trace glutens. It has made an enormous difference. I now hardly ever get ill except for the occasional migraine or D due to cross contamination from gluten.

In the fall of 2010, thanks to a comment on celiac.com by another poster, I discovered I also have salicylic acid sensitivity. For years I have known I was sensitive to asparin--since it causes me to get bruises like it also did for my maternal grandmother. What I didn't know is that I am also sensitive to salicylic acid many vegetables and fruits (its mostly in the skin) as well as in most herbs. How ironic since I have always loved both vegetables and am practically an herbalist! Nevertheless, going off most of the salicylic acid is making it so I finally can sleep better at night. I am thus dealing however with two conditions, both of which are hard on the intestinal villi. I have had to change my diet radically. but as a result my psoriasis in my ears and nethers has largely gone away. Largely, since its hard to avoid salicylates entirely.

I am now also experimenting with making my own yogurt again as well as home made whey fermented sauerkraut. both of which experiments seem to be helping me out a lot. I am lucky I am not amine intolerant too it seems. I am currently going with the belief that one can heal one's villi taking nattokinase to counteract scar tissue, and create a healthy intestinal flora by eating home made fermented foods. For me they seem to need to be started using whey rather than just regular completely wild yeasts. But even so, progress is progress.

As a result of all of the above seem to be healthier than I ever have been.

My thinking and short term memory too seem to be getting stronger all the time. I believe I may actually be becoming more intelligent, which makes sense when you think about it given my having gotten rid of all those handicappers finally. The idea that one has to get more senile with age apparently just isn't so in my case. Instead I am experiencing the reverse condition. Same too with aching joints etc.

Thankfully I now seem to be able to do more and be more without having to worry about getting sick all the time. Overall now life is becoming more of a positive adventure for me rather than something I must endure.

I wish I had known more about all this when I was younger; however I figure its never too late to really start living a more fulfilling life. It is my hope that I can help others discover their path towards healing too--both with hypnotherapy and with a book or two about the whole subject that I plan to write.

  1. 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...
  2. Hi, Good to hear from you. It has been awhile. To be honest I hope you see this message, I cant figure out this new system and really dont have the energy for it. Been swamped with different projects. leaving for reno tomorrow for chefs conference then LA the following week. I must have been vey wicked since I sure dont get much rest. What have you been up too?

  3. I made a soup using a chopped leek, 5 large stalks of chopped celery, 1/4 chopped cabbage with already cooked brown rice, a good bunch of shrimp and seaweed with a bunch of chopped parsley and 5 large cloves of minced garlic and a big dollop of gluten free miso. Tasty and lovely! Great for my ailing...
  4. I made black bean vegetable soup with a largish chopped yam to replace the carrots and an addition of brown rice added in my bowl at the end. The soup had a large chopped thoroughly washed leek, around 7 chopped celery stalks and a fair amount of green beans, chopped fennel, an entire bunch of...
  5. Excellent! Like the other poster suggested,, ginger is a good addition. I do suggest too that initially you don't overdo things. By all means get out a bit when you feel better, but also let your body get plenty of rest to make sure you don't have a relapse. Bea
  6. Actually for me its the salicylates in the lemons that give me problems. I can handle a bit now and then, but then overdid them since they are supposed to be good for cleaning out the liver and gallbladder. It is limiting without the lemons since I have very few spices I can use. Just parsley...
  7. Brown rice, green beans and trout. Mmmm! Seems of late I am going more macrobiotic due to gall bladder issues. Am giving my black beans a two day soak. Will have them with digestive enzymes. Since I have gone off all other meat than fish (and only have it once or twice a week), plus am off...
  8. Assuming you don't have salicylate sensitivity (like me these days and thus can't have most herbs or spices) the following are great for colds, flu, bronchitis etc.: Olive leaf is a good idea. It is anti viral, anti microbial and anti biotic. If you get the extract make sure it is gluten free...
  9. I think you should open this up as a topic. You will find I am not alone in this opinion. It would be interesting to find out the scientific proof as you say. For most of us at any rate it is a very real problem. What you get in the circulating hot air in the oven does affect most of us and could...
  10. I did not invent this problem about old gluteny ovens. I don't know if there is scientific proof or not, however almost everyone on celiac.com has to bake their baked items in a completely gluten-free oven or suffer from the effects. It is part of the standard procedure. Certainly you must have...
  11. 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...
  12. 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...
  13. Tonight we had thin beef sirloin tip with garlic, peeled white sliced potatoes boiled and served with butter, and cooked green beans. A simple meal, but delicious! These days I seem to crave beef twice a week. It gives me more energy. I just make sure I have some pancreatic enzymes to help with...
  14. Just wanted to add that both my boyfriend and I experience ataxia as well as migraines and slurred speech with difficulty finding the right word associated with being cross contaminated with gluten. And yes it very much is like being drunk, but not so fun since its not on purpose. Both of us...
  15. I too react to almonds (and other nuts) neurologically. For me it is the high salicylic acid (SA) content in them that bothers me, like what eatmeat4life suggested. Am hoping for your sake that you don't have a SA response like I do. However if almonds and other nuts continue to be a problem for...