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MariaOfColumbia last won the day on May 2 2012

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About MariaOfColumbia

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  1. Andy316, I haven't tried going off the methylfolate and methylcobalamin yet. I have read that the sublingual (under the tongue) ones are far more effective than the swallow kind. My choice of brand is determined by what kind of sweetener they use in the formula. I'm very intolerant to artificial sweeteners, so I only use brands that have lactose or dextrose added. I wouldn't mind no sweetener at all, but that doesn't seem to be an option for a sublingual. I guess the manufacturers think we are all wimps.
  2. Sorry I was gone so long. I thought I had notifications turned on. I take a sublingual methylfolate every day and a sublingual B12 called methycobalamin. I take a B complex vitamin that doesn't have folic acid. Then I take the other supplements that would be in a multivitamin. But I can't take a multivitamin because they all seem to have folic acid or cyanocobalamin in them. When I eat at restaurants, I have to eat gluten free because there's no telling what kind of flour they use. When I cook at home, I read the labels and make sure that everything is folic acid free. After 2 years, I can tell you that I'm not having yeast problems any more. Even a long term fungus under one toenail is gone. The few times I've cheated, half the time I seem to have a boil appear a day or two later. That's painful enough to convince me that the immune suppression is a real thing and I really shouldn't be tempted by fried, breaded meat like that! There are other issues. There always are. But finding out about MTHFR and folic acid was a big part of the puzzle for me.
  3. She's lucky her doctor thought to check! Mine was clueless. It didn't even trigger any sort of query on her part when the B12 levels came back abnormally high. I was desperate at that point. There really wasn't anything else I could cut out of my diet at that point! I'd already trimmed it down to vitamin deficiency levels! I thought I was taking care of that with supplements, but it also turns out you can't store the B vitamins in a clear container. I'd been using a clear pill organizer to keep all those pills straight, and during my frantic googling for why I might be having a vitamin deficiency also turned up the fact that about half the B vitamins, Vitamin C and something else (I forget) are not light stable! I was only getting working pills for a day or two after I refilled the organizer. That was embarrassing. I really ought to have run across that fact sooner in my life. But the folic acid is the big culprit. It fooled me into thinking I was gluten intolerant for YEARS. Oh, and organic foods can have folic acid added, too. Gotta watch the labels.
  4. I'd been on a strict gluten free diet for 7 years, but kept having problems. Things got worse and worse and I kept cutting all kinds of carbs out of my diet until I was left with meat and a few vegetables. Any kind of starchy carb would cause my gut yeast to go out of control and make me bloat and burp and have abdominal cramps like crazy. Reflux and diarrhea, too. It was terrible. I was worried about nutrition the whole 7 years, so I took plenty of vitamins. This year, I started showing signs B vitamin deficiency: cracks at the sides of my mouth that made smiling and yawning very painful. They even bled. This went on for months. I got my doctor to test me for B12, and it showed abnormally high results. A quick google showed that signs of deficiency along with high labs could mean I had the MTHFR gene defect- meaning I couldn't process cyanocobalimin (most common form of B12) and folic acid- an unnatural form of folate that is used in vitamins all the time and in enriched flours. I'd had genetic testing done through 23andme a couple of years before, and a quick look at those results when run through promethease showed that I do have the MTHFR mutation. Folic acid does me no good at best, and elevated levels cause problems. So I stopped taking my B complex vitamin and the multivitamin and started supplementing with methylfolate and methycobalimin- the kinds of B12 and folate that my body can handle. I also added in individual pills of the other B vitamins. The cracks at the sides of my mouth healed. After a week, I started trying starchy carbs again. No problem. No yeasty bloating. I added more carbs, and even sugar- not a problem. Then I got to wondering... could my problems all this time have been caused by folic acid? In fact- a quick review of my medical records show my weird health problems BEGAN in 1998, when the US government first started mandating the inclusion of folic acid into many foods and most wheat flour products. So, I crossed my fingers and bought some organic hamburger buns , made with non-enriched flour, and my husband and I ate burgers on real buns for the first time in 7 years. There was no reaction. I bought organic flour, non-enriched, and made biscuits and gravy with it the next day- not a problem. It doesn't matter what I make- as long as there is no folic acid in it, my guts are fine with the product! Apparently, somehow the high levels of unmetabolized folic acid in my body were interfering with my body's ability to keep gut yeast under control. I'd had the test for gluten antibodies done early on, so it never made sense that I was so sensitive to gluten- but it turns out that it wasn't the gluten after all. It is a problem with folic acid that is in almost all wheat products. Now, I did run into a problem with mislabeled commercial baked goods a couple of times. It turns out that it's not even against the rules for bakeries to substitute a common ingredient like wheat flour with a *better* ingredient like "enriched wheat flour". When this happened, all the old symptoms started up again. The first time it went on long enough my mouth was back to cracking and bleeding again before I figured it out. It is very clear to me that I cannot tolerate folic acid in any quantity any more. I've been sensitized to it, I guess. It just took me 18 years to figure out exactly what the problem was. So, I bought a bread machine and am making my own bread again. I did hedge and get one with a gluten free option, just in case this is all just a temporary fluke.... but I don't think so. I've been eating wheat products since May and have had no ill effects yet- as long as I'm the one that makes them. Too much folic acid is bad for you even if you don't have the MTHFR mutation, btw. Anyway, I'd love to hear if anyone has similar experiences.
  5. MariaOfColumbia

    Can You Help Me?

    I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.
  6. MariaOfColumbia

    When Going Gluten Free Isn't Enough

    That's OK. And I'm not trying to imply that everyone ought to try a low histamine diet, either. I kind of envy you folks who only have to avoid gluten. When I was on a gluten-free diet, I thought that was hard. When I made a combined list of all the foods the various histamine intolerance websites and sat back and looked at it.... I was appalled. Who could do that???? But, it turns out... pain is a powerful behavioral modifier. It turns out that not only can I do the diet, I don't even like the smell of bread any more. I have kind of a "Yuck, that's poison!" reaction now to most of the foods I can't eat. In case anyone's interested, here's the big list consolidated from all the websites I could find. It contains both foods that have a high histamine content, or foods that cause your body to release histamines. Alcohol Anise Apricot Artificial colors Artificial flavors Avocado Bacon Baking mix Bananas Beans, red Beans, soy Beer Blue Cheese Bratwurst Buttermilk Cake decorations Candies, commercial Cashews Champagne Cheese Cherry Chicken Chickpeas Chocolate Cider Cinnamon Citrus Cloves Cocoa Coffee Confectionary Cranberry Currant Curry Date Drinks, carbonated egg white Eggplant Fish Fish, canned Flour, bleached Gelatin, flavored Gherkin pickles Grapefruits Ham Icings, ready made Ketchup Kiwi Loganberry Mango Margarine Meals, prepackaged Meats, leftover Meats, processed Milk, flavored Mincemeat Miso Mushrooms Mustard Nectarine Nutmeg nuts Olives Orange Papayas Paprika Parmesan Cheese Pea Peach Peanuts Pears Pineapple Pizza Plums Preservatives Prunes Prunes, red Pumpkin Raisins Raspberries Red Wine Relish Salads, commercially prepared Salami Sauerkraut Sausage shellfish Soy sauce Spinach Strawberries Sunflower seeds Syrups, flavored Tangerines Tea, all Tea, black Tofu Tomato Ketchup Tomatoes Vegetables, canned Vinegar, balsamic Vinegar, red wine Walnuts Wheat Wine Yeast Yogurt
  7. I'm sorry if I seemed to invalidate you histamine issues. I didn't mean to. I'm glad that you got things figured out so that you can be healthy again. Good health is so important.

  8. MariaOfColumbia

    When Going Gluten Free Isn't Enough

    I've proved gluten isn't the issue with me by eating rye products without problem. Not only did I make and eat those rye biscuits as a test half a year ago... but my pancake/waffle recipe now has rye in it as well. And I eat that every day. It was wheat that was and is the issue. One of them. I can eat a little bit of wheat, but not often and not daily. Whether that is due to histamine content of wheat or not- I really don't know or care. I can't eat anything yeast raised or fermented though. Not in any quantity. OK, that's not quite true. My pancake recipe has a dab of buttermilk in it-- but it's obviously not enough to set me off. From what I gather, histamine intolerance is kind of like a cup. You can only take so many histamines from the various sources (food's not the only one) and then when the cup fills and starts overflowing you have problems. Anyone can get sick from histamine poisoning. Most people won't eating normal food. My "cup" is pretty small, and I have to watch food levels, allergen levels, and stress levels because all of those produce histamine which my body for some unknown reason cannot mop up quickly. In fact, I've made it a policy to never risk eating anything risky when I'm feeling sniffly or my eyes are itchy. Everything has some histamine in it, and if I'm already at my max load and starting to feel it, it's best just to eat very safe food or skip a meal all together.
  9. MariaOfColumbia

    When Going Gluten Free Isn't Enough

    I was so invested in the idea that I was gluten intolerant that when I started reacting to homemade yogurt half a year into it, I assumed that the dry milk I'd been adding to it was contaminated and I threw it out. A new box produced the same result, though, so it MUST be that the factory wasn't gluten free. I did have plenty of reason to believe that gluten was the problem, though. There was the quieting of GI symptoms, the disapearance of joint pain... and most strange of all- my hair started growing in curly! I've always had long wavy hair, but once I started eating gluten free, the new hairs grew in kinky! They still are, for that matter. I figure in about five years (seven years is the average hair life span, isn't it?) I'll have a whole new hair texture to deal with. That's not such a welcome change, but it IS an easy to see one. When I walk out into the wind now, the short kinky hairs blow free of the long wavy ones and poof up into a weird frizzy mound on the top of my head. However, more changes started upon escalating to histamine free eating. The most noticable is that I've apparently stopped producing ear wax. For 40 years, it's been my habit to clean my ear canals with a Q tip after showering (yeah, I know that's frowned upon nowadays, but I still do it.) About a month after going histamine free, I noticed that the Q tip always came out clean. I keep doing it, but it's always clean now. I don't know what to think about that one. Also, I got my ability to digest lactose back. Going gluten free didn't do that, but going histamine free did! Woo hoo! So many systems can be affected by this sort of thing. It constantly amazes me.
  10. MariaOfColumbia

    When Going Gluten Free Isn't Enough

    Food is such a basic need that people really have trouble imagining that what they were taught was good for them and tastes good..... isn't. For me this whole experience has been like losing my religion. I've eaten "healthy" my whole life. Whole grains and organic food was how I was raised. I believed that I was eating the best food I could for optimal health. I'd bake whole wheat bread from scratch. I'd grow tomatoes and eat them fresh from the garden because they were so good for me. When I'd get a cold, I'd drink lots of orange juice because that's what you do for a cold... Sure, I'd buy the occasional oatmeal creme pie or make a big batch of chocolate chip cookies.... but on the whole I was eating what should have been a really healthy diet. As it turns out, it's better for me to eat a hamburger patty, french fries and ice cream than that complex, varied and Oh So Healthy diet I grew up with. I found that quite depressing for a while. How could everything I believed about food for 40 years be so terribly wrong? How can a hot dog and potato chips be better for me than a peanut butter jelly sandwich? Last year, I didn't even grow a garden. Really, what's the point? I'm not doing it this year, either. Yeah, I can still eat green beans and sweet corn, but it's not really worth the effort for just two items that I can get in decent condition frozen at the store. And I never could grow potatoes worth a darn. I still try to eat healthy within my extreme limitations. The meat we use is grass fed and organic. The french fries we fry in olive oil. The rice is brown. The ice cream is all natural. But my heart really isn't in it anymore. I was betrayed by eating "healthy." Well, maybe not betrayed... but for a while there a Weird Al song kept runnning through my head, "Every thing I know is WRONG!" Now I'm hesitant to be sure that even histamine intolerance is the absolute, ultimate answer. My "faith" has been shot. But, however, this is the model that works best for me- so I'll stick with it for now.
  11. MariaOfColumbia

    When Going Gluten Free Isn't Enough

    Yeah, I was going down the spiral of looking for smaller and smaller quantities of possible gluten contamination when I found out about a gluten home test kit. I bought a couple of the GlutenTox tests and started testing food that made me react. Nothing I tested had measurable gluten in it. So I tested some wheat crackers just to make sure the test itself wasn't a scam.... and it worked for that. So at this point I really had a fork in the road. Was I so incredibly sensitive that I'd react to less than 5 ppm? Or was there something else going on? I could have easily gone down the rabbit hole of "Oh, Gee, I'm sooooooo sensitive" when my boss (who is a literal genius and really into nutrition) pointed out that it really didn't pass the common sense test and there HAD to be something else going on. I was a little resistant to that idea. After all, I felt *better* on a gluten-free diet! Right after that I reacted to pristine tuna salad that tested gluten free. So, I started googling and soon ran across histamine intolerance. That's it. I don't think it's salycilates. Aspirin has never bothered me and I can eat several foods listed that the wikipedia article says are to be avoided, as well as can't eat several it says are OK. The two syndromes are quite similar, though.
  12. A year and a half ago I was in pretty bad shape. Acid reflux/ constipation/ esophageal spasms/ constant abdominal bloating along with constant powerful burps- such that they interupted sleep / eczema and then my joints started hurting a lot and I was diagnosed with early osteoarthritis and told I'd better get used to it, that this was who I was from there on out. Since my family has a history of sensitive stomachs, I dismissed all the GI stuff as something I could do nothing about. I'd seen a doctor, and she had no suggestions for me besides losing weight and taking drugs. The arthritis I sighed about and went on. But the eczema was in my eyelids and was starting to get really painful and oozing. There HAD to be something I could do about that! So, after much internet searching, I found a suggestion that a wheat free diet could help with that sort of thing. What the heck. Maybe it would help. After a week of no wheat products (you know how hard that is at first!) I suddenly noticed that my GI symptoms had subsided. For the first time in a very long time, my tummy was QUIET. Wow! So I read up on gluten free diet and decided that must be my problem. I learned how to keep a completely gluten free kitchen and waited for the eczema in my eyelids to go away. A month passed, but no results. After a particularly shameful chocoholic attack, I noticed that the eyelid problem was worse than ever. The light bulb went on, finally. What if it was (oh help!) chocolate? It was. After a week of no chocolate, my eyelids healed and haven't flared up since. OK, so ... it's gluten and chocolate. After another month, my joints stopped hurting! THAT was unexpected, and quite welcome! So much for you, Dr. Rheumatologist! Telling me there was no hope. Despite my care in the kitchen and almost never eating out, I kept getting "glutened". I'd be in pain for days after eating the wrong thing. I could only assume that tiny, tiny microquantities of gluten were somehow getting into the ingredients I was using since I kept reading about that possibility on this site. Even gluten free meal mixes bought from a dedicated gluten free factory would hurt me. It was terribly, terribly frustrating. I'd make a pretty good loaf of gluten free bread (NOT easy) and be hurting for days. The same with gluten free pizza. And even the absolutely delicious gluten free carrot cake I developed. Finally a year later, after getting hit bad by an impossible meal (tuna salad with lots of boiled eggs in it) I started looking for another answer. After googling "tuna intolerance" I came upon a website about histamine intolerance. After an unbelieving look at the long, long list of foods that histamine intolerant people can't eat, I dismissed it. That couldn't be me. That was just crazy! No one could live like that! But it kept nagging me. Later that week I had a single boiled egg for breakfast with nothing but water. I reacted. A glass of orange juice a day later. I reacted. Oh, no... it probably was histamine intolerance. As a final test I made some biscuits with rye flour (rye has no histamines, but some gluten) and I was OK. If I'd been gluten intolerant, I'd have been in agony for a few days. So, histamine intolerance it is. Now, there isn't a comprehensive, cool, respected website for histamine intolerance. There are a bunch of small ones, mostly in Europe, and the foods listed don't always agree. Of course there are the main categories of anything fermented or yeast raised and tomatoes and wheat and fish and eggs and citrus... but that's the tip of the iceberg. I went to all the sites I could find and made a master list of ALL the foods listed and spent a couple of weeks avoiding them all. I felt fine. Now one by one every week or so, I try something new on the list and am slowly developing my own personal list of foods I can't eat. Most of them, I can't. But some on that list I can. And some of them are OK in limited quantities. And it's not as bad as I thought it would be. Sure, there are times when I have episodes of Poor Me... can't eat what I want to eat.... but I get over it. Knowing what to avoid and being successful at it is priceless. It's a hundred times better than hurting all the time and not knowing why and doctors just trying to put a drug bandaid on the problem. (Yes, I did see a digestive specialist several times, but she was rather unhelpful.) Histamine intolerance isn't something that's taught in the med schools in the US, I guess. I've been avoiding histamines for half a year now and I almost never get hurt by food any more. Sometimes I'll try a new thing and have to add it to my personal "can't eat" list (like real maple syrup... who'd have thunk it?) but for the most part my systemic inflammation has gone way down. I just thought I'd share this. Sometimes it isn't teeny tiny bits of gluten causing the problem. In my case, wheat is just a subset of a much larger catagory of foods I must not eat.
  13. MariaOfColumbia

    Poll- How Tall Are You?

    I'm 5'5" and have size ten feet. I assume my growth was stunted, because otherwise my feet would be more in proportion to my height.
  14. MariaOfColumbia

    Hair Texture Change?

    I've had slightly wavy light brown hair all my life. After 5 months off gluten (except for accidental exposures) the new hairs on the top of my head are coming in dark, thick and twisty like cork screws! They won't smooth down to meld with the rest of the long wavy hair. The rest of my hair is very long, so I'm kind of worried that I'll have to cut it and let the short twisty stuff be the new texture of my hair. I like having hair past my waist. I don't want to cut it just because the new hairs are so different, but as more and more wirey stuff comes in, I may have to. Or put up with looking like a clown with a cloud of wirey dark hair on the top of my head and long wavy light brown stuff hanging down beneath. I've been using anti frizz shampoo for several months now, but the new hairs seem to be immune to anti-frizz technology. Sproing! Like corkscrews.
  15. MariaOfColumbia

    First Menstrual Period gluten-free, Feeling Aweful!

    Some feminine hygiene products have wheat based absorbants in them. Pads have always given me trouble, causing intense soreness wherever the pad touches me, and I have to use homemade papertowel pads at night just to give my body a break. This past period, I used the papertowel pads during the day too on the last day, since is was a weekend and I was staying home, and the soreness completely disappeared that day. So, I've ordered some organic cotton pads for my next period. I think my difficulty with the pads was a gluten issue, and I hope the new pads will make my next period easier.