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TakalaMember Since 28 Dec 2007
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Posted by Takala on 01 November 2010 - 01:30 PM
Posted by Takala on 27 October 2010 - 08:28 AM
And this is eventually going to lead to another massive poisoning like the melamine in the pet foods, and then in the Chinese baby formula, because if they can't track the gluten they can't really track any of the other ingredients, either.
All people are asking is that it be called on the label if it's there. What a concept! They seem to be able to tell if the active ingredient is there or not.
Posted by Takala on 25 October 2010 - 03:11 PM
The longer you stay off, the more likely you're going to notice what it feels like.
I've gotten really sick a few times from cross contamination where I never did find out for sure exactly what it was, other than I had eaten something out of the ordinary that day, that had the possibility. One of the things that really aggravates me to no end is to eat something where the new container is marked "gluten free," and it's a very good chance that it was the item that got me. I have twice reacted to seasoned "gluten free" snack chips that were purchased as a special treat. Lately I am suspicious of 2 other items, I'm waiting for days where it doesn't matter if I've got to function, and I'll try it one more time... 1 more reaction and I'll write it up as a warning. But I need to try them on different days.
Other times (not often, but under extraordinary circumstances) I risked getting cross contaminated and .... nothing.
There is so much other non gluten food that's good I'm not tempted to cheat. I had so many other things go wrong on a regular diet it's just not worth it, I'm self diagnosed, btw, off of tests others misinterpreted and an elimination diet.
Not worth the arthritis flares, neuropathy, kidney problems, heartburn, gallbladder symptoms of not being able to eat fats, bad obgyn problems, bone loss, dizziness, lack of coordination, visual problems.... the list goes on.
Posted by Takala on 21 October 2010 - 12:13 PM
Thanks guys. Well, because my stomach started off so fragile at first my dietician recommended I stick to white rice and potatoes to ease my digestive track. Umm.. not to question her advice, but white rice made me feel like a yo-yo about 2 hours after eating it. I have switched to brown rice (as of yesterday) but found it wasn't digesting that great - I wake up and drink a glass of carrot juice. Is that bad? Then I'm eating egg whites and a few apple slices for breakfast. Shakey feeling follows. I dont know if i should eat more chicken? More cheese? Something fatty and pray it digest ok? I'm constantly eating blan, boring chicken and ground turkey for dinner because I'm still inflammed from the whole process. It took 10 years to diagnose my Celiac Disease so I'm a little messed up right now. Any ides would be so much appreciated. I've read your blogs. Do you think i should cut out brown rice then too?
Oh, for the love of ***** . "dieticians." should take the white rice and potatoes and .... nevermind.
You need to become a high fat and protein nibbler, but currently you may not be able to handle fats well for a little bit. How are you with the cheese, okay ? If not okay, that ability to eat cheese may come back later or you also may react to the dairy cow proteins, it varies. Fage yogurt is good if you can handle yogurts. Watch out for some yogurts with added milk powder which may not have had all the lactose aged out of it.
Carrot juice is very high sugar. WAY high. That will spike you. Followed by egg whites and apple slices. So that's a lot of fructose, a little protein, and no fat. No wonder you're shaky.
You have to eat small meals of proteins throughout the day, which you already know. But add in some fats. Don't be afraid to eat any thing at any time of day. Some fats that work are olive oil, nuts, peanut butter, coconut milk, coconut oil, avocado. Celiacs and gluten intolerants may be more susceptible to carbohydrate intolerance and even if we get to where we can eat lots of different gluten free foods, we may not be able to scarf down a lot of white , unrefined carbohydrates. This means we replace them with unrefined carbohydrates, vegetables, and fats. If we do eat a bit of white stuff, be sure it isn't the only thing or your blood sugar will go up fast and then fall down hard.
Watch out for those sugars! You may need to use mostly artificial ones, or stevia, or agave or honey which release sugar in to the blood stream more slowly.
If you use a gluten-free milk substitute, watch out for sweetened rice milks. That over a bowl of gluten-free cereal can practically render one comatose.
Unsweetened yogurts can be thinned with water to be used with a carbohydrate, or there are unsweetened nut milks if you look.
Vegetables. So you don't want to eat a vegetable for breakfast. You also need the fiber. Try canned mashed pumpkin heated up with some coconut milk and sweetener. Or some canned, well rinsed beans seasoned with some nice gluten free apple cider vinegar, cumin, and chipotle tabasco. Like I said, think outside the time of day and go for what your body does best on. Beans over a fried or hard boiled egg with some lettuce and cheese might be strange, but it may even you out for breakfast.
Cucumbers and snap pea pods also can make a tasty breakfast or mid morning snack vegetable.
Other breakfasts I have done are apples, nuts, and a little cheese or a hard boiled egg. Always use some coconut milk for the fat, you can use it in tea or coffee or hot cocoa even (gluten free milk substitute, coconut milk, cocoa powder, artificial sweetener - won't spike your blood sugar).
Cooked fish and leftover asparagus also works for breakfast. If you can do soy, you can mix gluten-free mayo and mustard together for a tasty sauce. You can take thin slices of fresh ginger root, and some sweetener, and season it, too. (as you can tell, I am not wedded to the idea of "cereal is breakfast" )
High protein snacks can be gluten free turkey (hormel, buddig), eggs, nuts, meat servings you've cooked in advance like chicken thighs or meatballs, jerky if you can find or make some gluten free, cheese, tuna, salmon, peanut butter.
Peanut butter is excellent if you can handle it. A big spoonful is an easy high protein and fat snack. There is also sunflower seed butter and almond butter.
Lara bars also have some flavors made with dates and peanuts.
If you eat a bit of rice, balance it with something that is high fiber and protein, like beans or lentils or tuna or meat or gluten-free yogurt.
Posted by Takala on 18 October 2010 - 03:03 PM
I have noticed this year after reading dozens of these stories and seeing a few things on video from cable "news" that the Main Stream Media in more than one country apparently has some sort of template for repeating the same misconceptions over and over again. Most of the trash seems to be coming from so - called registered or professional dieticians in the US, the UK, and Canada, altho one of the worst ones was Dr. Nancy Snyderman on MSNBC, (she is their "medical editor", btw) telling a woman that asked that her recently diagnosed celiac husband might not have to stay gluten free for the rest of his life. I was rather astonished there was less outcry over that awful, snotty mistake, if you watch the entire interview you see that "Dr." Snyderman is absolutely clueless on the fact that this is a real autoimmune disease, and not a "lifestyle choice" or "fad diet" being taken up by her neurotic peer group. I felt like I was watching one of the food trolls that lurk on the internet, the ones who tell you there's no relationship between disease and diet, coming out of the closet.
Now on to Dr. Peggy Marcon's bothersome quotes
In fact, she says, gluten-free foods can be quite harmful due to the extra additives and preservatives in gluten-free products like cookies and breads. As well, they are often high in calories — sugars and fats — to make up for the removal of gluten.
In fact, gluten-free diets are often accompanied by a buyer-beware stigma because many people who go on them gain weight, see an increase in their cholesterol and continue to have vitamin deficiencies since processed gluten-free foods can lack the nutritional benefits found in regular staples such as bread and whole grain rice (which contains no gluten).
If parents suspect their child is gluten intolerant, for which there is no specific test, or would benefit from a healthier diet, Dr. Marcon recommends they consult a doctor to check for the genetic markers of celiac disease and to rule out other common illnesses with similar symptoms, such as irritable bowel syndrome.
Say what ?
There's no test for "gluten intolerance ?"
All celiacs ARE gluten intolerant. What planet is this medical doctor on ?
Does she acknowledge the link between celiac, gluten intolerance, and thyroid disease and weight gain, or is this another imaginary relationship ? When a person's intestinal lining is healed, they begin to absorb nutrients better, and this is why there can be a resulting weight gain. Does she acknowledge that a gluten free diet containing such high protein grains as quinoa and buckwheat, which were mentioned as being used by the person she was criticizing, can be nutritious ?
Is it okay to discover that irritable bowel syndrome can be relieved by a diet change, and to stop eating the offending substances, even if they do happen to be WHEAT for some people and children who otherwise have no diagnosis ?
She ought to realize that with the majority of celiacs still being undiagnosed, and with the difficulty of getting a diagnosis for children, (official diagnosis pending on that intestinal biopsy, after the damage is done) that there is going to be a large population of children of those adults who are also inheriting the same genes.
Telling people to continue to eat foods that make them feel bad is never good medical advice.
Posted by Takala on 05 October 2010 - 06:14 PM
You would want to use a clean surface, not used wood or plastic that has been exposed to regular wheat gluten flour. You can roll out pie dough between 2 sheets of waxed paper, using a regular drinking glass, peel back one side of the wax paper, and flip the dough into the plate. Or just pat it into the pan with your clean fingers. But if using a top crust, you'd need to roll it.
And you wouldn't want to cut the apples on your regular cutting board, maybe use a clean plate with a paper towel laid on it.
Different gluten free flours have different properties, and some gluten free flours need the addition of a small amount of xanthan gum to act as a binding agent replacement for the missing gluten, depending on the recipe. Also, they may bake better at different times or temperatures than normal wheat flours. Typically, egg is used in gluten free pie crusts, but not always, sometimes egg replacer is used, or there are also some vegan recipes out there. Some of the commercial gluten free shortenings do strange things when heated up.
You can also use ground up nut meals (nuts can be ground in a clean blender, but again, there's that cross contamination issue) as a pie crust base.
I would search for specific gluten free pie crust recipes as this is one of the more trickier things to get right. There are also pre made gluten free pie crust mixes and even frozen gluten free pre made pie shells at some of the larger health food type stores.
Posted by Takala on 01 October 2010 - 10:40 AM
With your daughter being gluten intolerant, that means she had to have inherited the genes predisposing her to it from at least one parent.... that and your low thyroid and low vitamin D, and this new symptom, sounds like you may be be wanting get tested for the celiac blood antibodies while you're still on it, and/or the genetic test if you want a diagnosis.... it seems we people with the gluten intolerance symptoms who aren't classic at wasting away just can't get no respect ..... I went for about a decade with the ataxia and other neurological symptoms, until I had my brain scanned, and the neuro Dr. STILL could not and would not connect the brain lesions with being gluten intolerant because she was insisting at that point I was a head case - because she had deliberately misdiagnosed something else, too- well yeah, actually I did have a head interior that was messed up, but with an actual physical cause that they missed, along with an ongoing and permanent c spine blown disc problem that's related, because of bone loss and bone spurs and some stenosis.
Posted by Takala on 01 October 2010 - 04:48 AM
You haven't been on the diet very long yet, and you also may be having some hidden cross contamination issues. Stick with it. Eat as well as you can, re proteins, vegetables, and good fats, and be sure to take those gluten free multivitamins (B complex and vitamin D very important) and Calcium/magnesium mineral supplements. And exercise. Yoga and stretching and quiet exercise is both calming and very good for you, as is just walking or other fun sports. The more nutrients and bloodflow you can get to the brain, the better it will heal and function.
I still lag in verbal skills compared to written, but this has been lifelong and I doubt it's going away now.... especially when I've gotten to the age where the stereotype is that you don't know whether you're coming or going
I was having some very strange neuro/eye symptoms years ago, and my optician, of all people, finally was able to track it down to a reaction to an over the counter antacid medication I was taking at the time, which people can react to.
Posted by Takala on 22 September 2010 - 11:47 PM
Only dumb answers.
Posted by Takala on 19 September 2010 - 08:34 AM
I'm gluten intolerant. I self diagnosed after extensive research, based on symptoms and because of my dramatic response to a trial diet, because my last neurologist had no idea what it means when you have bright spots in your brain.
I notice a lot of the medical people frown on this sort of thing, all I can say is, they need to clean up their own profession first, and stop letting the insurance companies tell them to slowly x ray people to death at 2 month intervals, and then call it a day, before they lecture the patients.
I have mostly recovered from the neurological symptoms after seven years of being gluten free. I've had lots of doctors earlier in my life when I was a young adult either blow me off, imply or call me a head case in spite of test results showing strange things they had no explanation for, or just say, sorry, learn to live with it and you probably have MS. Except that when they did the spinal tap.... I didn't have MS.
I also had bona fide spinal damage, from being undiagnosed for my entire adult life. Some of these problems will never completely go away, and I will be plagued with them for the rest of my life. Fortunately my current PCP believes me about the "other stuff," because he is amazed I manage to function with this crappy a cervical spine. I had a very good doctor way back who sent me for physical therapy to build up my supporting muscles, which I still do.
This damage is caused by long term malnutrition. Being celiac or gluten intolerant means that the lining of the small intestine gets damaged, and you don't absorb vital nutrients as well. You will be short on the B vitamin complex and calcium. The lack of B vitamins will cause mood swings, also. This mal- absorbtion can also cause all sort of strange food cravings for intensely sweet things and carbohydrates. If you indulge, you can get a blood sugar spike, and then a crash, over and over again. You brain does not intrepret a calcium imbalance in your bloodstream, caused by not absorbing it, as you're short on calcium, but as hunger, but it will direct your kidneys, which filter the blood, to start removing it from the storage area of your bones. This in turn can cause all sorts of little chronic problems not only with your kidneys, but with your bladder getting crystals, stones, and infections.
This is why, if you haven't been told already, you should be taking gluten free vitamin and mineral supplements.
Undiagnosed, unacknowledged, and untreated by avoiding gluten, you then become more likely to develop all sorts of the other related diseases, such as thyroid auto immunity, arthritis, diabetes, gallbladder and liver problems, kidney problems, bone loss, osteoporosis, fertility problems, endometriosis, cysts, etc.
I don't know if you have had any blood tests yet for celiac or gluten sensitivity, but I want to warn you that they are not always accurate, especially if you have been off of gluten for a long time. You can get yourself tested to see if you carry the HLA DQ genes that are associated with being gluten intolerant or celiac. The genetic testing is getting more refined all the time. This won't "prove" you have anything, but it will show if you're in the 30% of the population that carries them. Only about one in 100 people currently are thought to actually have the disease, but the majority of them are still out there, undiagnosed.
If you really are gluten intolerant, getting stricter about cross contamination issues can get rid of most of the neuro symptoms, and you can be healthy, but this means you have to make a sort of mental leap that you deserve to be healthy. You will be surrounded most of your life by people who just sort of don't get it. Most of them don't mean ill will towards you, they are just not thinking, or they are not educated. A few, now and then, do mean ill will towards you, or at least passive aggressively have no intent of cooperating in your comfort, and you have to deal with them, too.
You can get easily cross contaminated by family members, so they need to be either super vigilant about cleaning up after themselves and using gluten free soaps/shampoos and brushing their teeth before kissing, or you're going to get repeatedly glutened. They make lots of gluten free cereals now and even Bob's Red Mill has gluten free certified oats. My spouse switched over to gluten free in the house voluntarily because it was easier. If we want something gluten free, we usually bake it. I keep a big stash of various gluten free flours and the other baking staples around. We also try to keep frozen gluten free tortillas or crusts around for spontaneous pizza making.
I doubt you will get the roomate to do this, so I would suggest you either, long term, find other living arrangements, or figure out how to segregate your cooking stuff from his. Young males tend to eat a lot of cheap carbohydrates.
You also need to be wary of pets. Especially cats, because they tend to be everywhere on the furniture. I have all pets now except one ancient barn cat (who gets a little canned fish food) on wheat/barley/oats free pet foods, because not only are some of them allergic, but I don't want to be licked or drooled on or be breathing pet dander from them licking themselves when they're eating the wrong thing. I thought this wouldn't matter at first, then I observed several chain reactions when Pet A who was still eating regular Wheat Trash Pet Food drank out of the communal water bowl and then Pet B, who was wheat free, shared. One time we had another mini disaster when a pet food changed its formula from wheat free to having oats, which must have been badly cross contaminated, because I ended up with a dog who licked himself a massive raw spot in a few hours and then we have to have treatment and another vet bill. Some cat litter can, also, not be gluten free.
The interesting thing is the cats really like the dry wheat free cat food. I thought, yeah sure, the cat will probably not want to eat this 'duck and potato' or whatever weird flavor it is I picked up a bag of last, but they're like Oh Wow and digging into it like the way dogs eat. If you read the labels of some of the more heavily advertised pet foods, the stuff they put into it is sort of gross- if cats were meant to eat that, they 'd be out there grazing or using spoons.
Posted by Takala on 17 September 2010 - 07:50 AM
Don't know about the Mexican version, but the Best Foods Mayonnaise up here in the States is safe. Noticed that they even started labeling it 'gluten free' in the tiny print, maybe after they noticed a lot of us were eating it and putting it on the "seems safe" lists.
It does have soy oil here, so you may also be having a cross reaction as some are also sensitive to soy, at least in the beginning stages. I've looked at olive oil mayonnaises, but they are cut with food starch, and I won't go near generic starches even if labeled as supposedly safe, because I react to them randomly.
Frustrating about the wheat contaminated tortillas, but maybe you could help educate the Mexican public about celiac and gluten free in general, as a large percentage of some of the indigenous population carries the genes and they may wonder why they're always getting indigestion now from something as basic as tortillas.... corn tortillas really should not have wheat in them, period. I see the same thing here with the specialty tortillas.
Posted by Takala on 21 August 2010 - 11:05 AM
Get a new toaster, colander, and cutting board for yourself, minimum, if your family does not go gluten free. If you're baking gluten free breads, get a new bread pan(s). My husband, to my surprise, decided on his own to go gluten free in the house with me, after watching some of my reactions, it's actually much easier for us this way. He says he gets enough of the "other" stuff when he eats lunches or business meals out.
Your old plates and silver ware and probably your other glass ceramic cookware is fine, as are any stainless steel you can scrub out. If you use cast iron, dedicate it to gluten free, or bake it in the oven on the cleaning cycle, clean it, and re season it. Throw out the old rubber spatulas, plastics used to store glutens with sauces, like used tupperware, and wooden spoons or give them and the other used stuff to Goodwill.
Change your lipstick or lip gloss to gluten free.
If you have indoor pets that lick or drool on you, you will want to change your pet food to gluten free. This was a no brainer as we have 2 part bred dogs of the same breed that are both sensitive to wheat, also. If you think YOUR reactions are bad, you should see theirs. I ought to write a story called "This is Your Half Border Collie On Gluten. He's Not Insane, It Just Looks That Way. " I had to change the cat's food to protect them, because I couldn't guarantee they'd not get into the cat food all the time, and the cat licks me.
Best book I've read is one of the Bette Hagman cookbooks.
Also, wikipedia and their online links to Celiac, gluten intolerance, and the HLA DQ genes helps.
But you pick up most good information off the web. Anytime you need the status of a item, you can google
gluten free name of food
and it should pull up a link somewhere with a discussion. Ditto, you can do this for cities, towns, restaurants, to find places to shop.
Posted by Takala on 17 August 2010 - 01:47 PM
I find it pretty gross that someone would lather up with suntan lotion and then not wash their hands.....even if they did not have celiac disease. Leaving a slimy residue on my steering wheel or door knobs for that matter would not happen a second time but it has little to do with gluten. The thought of touching a door knob and then putting my hands in my mouth just would not happen but I'm more concerned with dirty hands and bacteria than anything else. I think if you read most reputable articles on Celiac Disease, unless you put that doorknob directly in your mouth after someone has touched it after ingesting a sandwich, you won't become glutened. I think Dr. Green even touched on this issue by saying people should not be making this diet any more difficult than it already is for some and not to
become paranoid about it. I think some of people's thoughts on how they may become sick are unfounded and create a lot of fear where there doesn't need to be any. Education is paramount to success with living gluten free.
I don't eat my make-up so it's a non-issue. You are also free to make your life as difficult as possible but you shouldn't criticize those who have it figured out and are doing exceptionally well on the diet. Anyone can learn to live gluten-free successfully without living in fear of shampoo and conditioner. If I were eating my products over the last 5 years, I wouldn't have the bloodwork I do and I wouldn't be as well as I am.
It's a good idea not to give people bad advice that will result in their getting cross contaminated.
Repeat: Oil residue is extremely hard to remove from most surfaces without a thorough washing. Hair conditioner does NOT wash out. Suntan lotions are designed to stay on with water exposure, and sweating, for several hours. Apply suntan lotion, wash your hands, and then lick them, if you dare, and tell us you can't taste it. If you use a gluten filled product, you're literally wearing wheat. And your scalp and skin dander gets everywhere, because humans SHED this constantly. Besides shedding their hair. Yes, you are smearing this stuff on your pillowcases and breathing it in, too. Do your lips ever touch the pillowcase when you sleep ?
Amusing that in the "Restaurants and Dining" section there are many, many descriptions of people who got cross contaminated at otherwise supposedly "safe" chain restaurants when ordering what was supposed to be "gluten free" foods. They observed that the food preparers, in spite of wearing plastic gloves, were constantly touching gluten filled breads or tortilla wraps, and then the supposedly gluten free foods, and using the same spoon on both, or using the same gloved hand to grab handfulls of lettuce, cheese, and then touching regular buns, etc.
Nobody questions that they have gotten legitimately sick, just from having a spoon or tongs used from one pot of gluten free food to having had it wiped across a slice of bread. Or having a plastic glove touch both bread and lettuce. It doesn't take VISIBLE amounts of gluten streaks to cross contaminate anyone. Yet should they be thought of as making it up ? People never touch their hair ? Ridiculous.
I'm assuming you're never done restaurant cooking, nor worked in any sort of health care facility or had any sort of serious hand washing training. Once you have, you easily see the different ways restaurant attendants and food prep cooks can mess this up. You see it when you order a gluten free meal in a restaurant with a gluten free menu with a waitperson you thought was pretty understanding, and then they come back to the table with your salad,....... and a plate of bread. Which they attempt to plunk down in front of you. Before they get The Look The bread has a little bowl of butter with it. Where has the knife, that is now stuck in the bread you told them you couldn't eat and didn't want, been ? What scooped the butter ?
Avoiding daily applications of gluten containing topical products is really quite simple: don't buy and use them. Use one of the many fine products that don't have gluten in them. Then you don't have to worry about whether they're "getting" you. Especially if you have a good thick head of hair now after it grows back in.
Posted by Takala on 17 August 2010 - 04:40 AM
Wheat is only harmful if swallowed and that's medical fact. So, you are either ingesting shampoo while you shower and you are sensitive/allergic to another ingredient in the product. If this is a topical reaction, you may have a wheat allergy on top of Celiac or an allergy to another ingredient. Celiacs have a tendency to have other allergy's/intolerance's also, as evidenced by many on this board. It can become very tricky to figure it all out. It may not be a wheat problem at all.
I continue to be mystified by this fantasy that one can put wheat filled hair conditioner on one's hair, which is designed to leave a persistent oil based residue, even when rinsed, use a towel on the hair to blot dry it, then rub the towel all over the body and not be coating one's self with gluten. Then touch any food products afterwards, and spread it further, every time you use that towel. The same with moisturizer lotion, which I can prove has gotten me from second hand cross contamination, when my spouse used it, and then bare handed food and ice cubes while preparing a meal.
Fortunately I have a pretty good sense of smell. If I can smell it on you, you're contaminated with it. I don't see very many people who don't touch their hair constantly without realizing it, even when doing things in the kitchen. Or at the keyboard. The steering wheel. Door handles. Say my spouse blobs suntan lotion on himself and then drives my car. It had better be safe lotion, because it's now on the steering wheel.
Cosmetics are also putting a lot of oats (sativa) in their stuff, and of course the oats are cross contaminated, also.
You are, of course, free to use whatever sort of goo you wish on yourself. Good luck pretending none of it ever ends up in your mouth.