VioletBlue

  steve45fla said:

Has anyone ever heard of myelin sheath? I have read where it is a substance that is present in the nerves (especially the endings) and if the sheath is damaged, then an itch like i experience can occur. I have also read where sulfur supplements help in healing the sheath.

Hi Steve. Would the sulfur be in the form of MSM? I've been reading up. Fortunately I have some Chondroitin/MSM tablets from the pre-Celiac diagnosis days. I was taking them to ease the joint pain I was having. Well, I no longer have the joint pain, but I bought a two for one deal on the tablets. They're still in date and gluten free. The dose is 500mg. Since nothing else has helped I'm going to give it a try. Wish me luck. The itching when it's bad is maddening.

Violet

I've mostly used salmon for sushi, in part because we've got limited options up here. Well, and I love raw salmon. The wild salmon is tough to work with, but has a different flavor than farm salmon, just a little wilder tasting and not as uniform a texture. Occasionally Vons will have a good piece of tuna that doesn't cost an arm and a leg. Tuna really needs to be nice and red. If it's pale or the color of swordfish I pass on it.

I love salmon and avocado rolls. That's my staple I use aluminum foil to wrap the sushi with. It' helps get it rolled up. I use a little garlic rice vinegar in the rice, and I buy the sushi rice. Sushi rice is a must because it's shorter grain and it's stickier so it's easier to get it to hold together. A wooden spoon for the rice and a sharp knife for cutting are essential too.

I start the rice and then begin slicing the fish and whatever else and getting the pieces of foil laid out. Usually by the time everything else is ready the rice is done. I turn the rice out into a glass bowl and mix in some vinagar and let it cool a little. Not too cool though becaseu the warmth of the rice helps soften up the nori

Mmmmmm, I think I just talked myself into salmon rolls for dinner tonight.

Violet

I started a similar thread here a while back about Dermographia. I had little response except sympathy, LOL. I have been suffering from Dermographia for awhile now. Antihistamines have no effect, unless I take them in very high doses. But the high doses make me extremely physically uncomfortable and drowsy so I've chosen to live with it for now. I have no idea what if anything I'm allergic to that is causing it, though the doctors best guess is it's stress related. I have family "issues" these days. I sometimes think if I'd been born an only child I'd be a hell of a lot healthier than I am just from the stress of idiot siblings. But that's another story.

I have some nerve damage from years of undiagnosed Celiac Disease. Some of the nerve damage has gone away since I went gluten-free 9 months ago, but some lingers on. So the concept of sheath damage as an explanation doesn't seem that far fetched to me. Perhaps there's hope yet then that this thing will go away one day.

Violet

You can also get a type of double vision effect if the curvature of the contact lens isn't right. I went through four pairs of lens before getting the right curvature last time. I'd look up at the Moon at night and there would be a second ghost image beside the moon. The better the curvature got the less the ghost image. Some doctors seem to have a hard time with the whole curvature thing, why I don't know. Changes in curvature can also happen with age and when prescriptions change.

Perhaps you could ask the doctor for the least expensive lens type to try for awhile to deal with the cost of a rapidly changing prescription? The difference in sight for instance between a toric lens and a normal lens isn't always that great, but the price difference is huge.

Violet

I think Celiac Disease can be a watershed moment in someone's life. I can't offer practical advice about how to navigate your life because I live a very different life.

One of the things I've come to realize is that life cannot be the same anymore; no getting around that. I think though that this realization is going to mean something different to each person who is diagnosed. My beliefs are such that I don't think anything happens without reason or purpose in our lives. But while believing that, I also understand that figuring out what that reason or purpose is ain't easy to say the least. I've said it before and I'll say it till the day I pass over, LIFE NEEDS TO COME WITH A FREAKING MANUAL.

I think the challenge, above and beyond the practical issues of what's safe to eat and where, is to find a way to accept Celiac Disease and acknowledge that this change now has a place in your life. To be very new age about it, you have to honor the change and accept it. I think that is the one thing that makes everything else easier.

How you do that, I don't know I'm still working on that. I was diagnosed in December of 06. Celiac Disease requires us to live very conscious lives which most people just don't do. We have to stop and read labels, ask questions and question answers. Being that conscious on a day to day basis is hard, particularly at first, but I think it leads to other realizations, and I think with time it helps you find a way to accept and integrate Celiac Disease into your life. It may lead you places you hadn't planned on going. I'm learning to be open to the options and possibilities and accept #%"&* change into my life

violet

This is just a thought. As your eyes get older their ability to focus tends to be effected. If you find yourself doing close up work like reading a book or looking at a computer screen and then gaze across the room your eyes won't be able to refocus as quickly as they once could. It can take several minutes to refocus. The eyes are like every other part of our body unfortunately, they don't work as well as they used to.

Also prescriptions change at that certain age as well, and it seems to be even more pronounced if someone is extremely near sighted. It results from something called Presbyopia which is a slow loss of the ability to see things up close or read small print. It is a normal part of the aging process. You may not notice any change until somewhere after the age of 40. So I now wear lenses to correct the near sightedness and glasses over that for close up work Getting old sucks.

Violet

I've lost count of how many times I've had a meltdown in the supermarket. Once it was because I discovered Vons stocked gluten free items. I cried for joy. Then I had another meltdown when they remodeled the store and removed all the gluten free items. Another meltdown when the store was out of CF Diet Coke, the only soda I drink. Then there was a go around in the ice cream aisle once. LOL, I'm sure there have been others I've forgotten and I'm sure there will be more. I've been gluten free since last December. I'm convinced now that supermarkets are basically at their core evil places.

As someone else mentioned, comfort food is good. Find something that makes you happy and always keep it in the house. Mine is Haagan Daaz chocolate ice cream. Find foods you love that are naturally gluten free and indulge and reward. Buy the more expensive cut of meat or the fancy vegetables instead of bread or cereal.

The money thing I completely understand. I've spent the last seven years on a strict food budget. At first becasue I had to and then because it made paying bills and having savings easier. I pretty much avoid specially made to be gluten free foods now in part because of the cost. I stick to whole foods with the occasional gluten-free snack like rice crisps or something. I just can't afford the gluten-free stuff nor the gas to drive for an hour to get to a Whole Foods or the shipping to order from an internet site. And in the end for me the gluten-free stuff never tastes good enough to go to all the trouble and expense. Of course I went through a lot of different gluten-free crackers and cookies and breads before I decided it wasn't worth the expense.

In short, give it time. Try all the gluten-free stuff out there and decide what's worth the money and what isn't. And always carry tissue in the supermarket, LOL. That place will always make you cry.

Violet

Do you suffer from anemia? Have you had recent blood tests to determine vitamin and mineral levels? I don't know your history, or how bad it's been for you, but Celiac can deplete crucial vitamin and mineral stores. The pins and needles, the twitches, the skin, the fatigue, even the paranoia could be a matter of vitamin deficiencies caused by the Celiacs. Once diagnosed, from what I've read from other people here, it can take months or even years to get those levels back up to where they should be. I'm currently taking about five times the recommended daily dosage of an iron complex and it's just beginning to make a dent after seven months.

Violet

Does anyone else suffer from this? It's a form of hives. It's present pretty now 24/7 and eliminating foods, changing diet, switching laundry detergents - nothing seems to help. The doctor seems to think it's stress causing it. I've tried a couple different anti-histamines with no effect. It's just annoying and people look at me funny. I try and remember not to scratch an itch, but it's just such a natural reflex.

Does anyone have any suggestions? Home remedies, folk remedies, ANYTHING.

violet

I use Pantene hairspray and hair care products. The hairspray appears to be fine. I use the humidity formula since it leaves my hair the softest. I've used a couple different formulas of theirs without a problem. You need to read the labels. I believe they have a conditioner with gluten in it, but the majority of their formulas are safe.

Violet

I'm in Big Bear in San Bernardino County south east of Los Angeles.

I've taken to making my own sushi. There's a sushi place in town but it's so expensive. Discovered making sushi isn't all that hard really. I'm picky about the fish I use, but homemade sushi has become a staple.

I don't bother with restaurants much. I can't have corn or anything with sodium nitrates either, so trying to eat in a Mexican restaurant would be pretty pointless. One of the local italian restaurant makes a good anti pasta salad and I have them leave the meat off. They've been pretty careful, plus they have a kitchen where I can watch them work, LOL.

We have one small organic store which stocks some special gluten free stuff, but by and large it's not worth it to me because of the price. I go there mostly because they carry the wheat free soy sauce and the red chili sauce from Thai Kitcen.

I can't quite bring myself to drive all the way down the mountain to shop at a Whole Foods or something that might offer a bigger selection of gluten-free stuff. I can't justify the hour down and hour back up and the gas. So I eat mostly whole foods and almost no pre-packed stuff.

violet

In place of wine coolers I've taken to mixing wine with soda water or flavored soda water. It's a cheap version of a wine cooler. Just make sure the flavored water is gluten-free.

violet

I was taking maximum strength over the counter Zantac every night prior to going off gluten. I tried Prilosec at one point with zero effect, LOL.

I went on the gluten-free diet in December 06. It took three or four months of the gluten-free diet before I could stop with the Zantac. I think the small intestine needs time to heal from the gluten damage, so I imagine the effect is not immediate.

As someone else mentioned apple cider can work. I couldn't handle the smell of the cider, so I took apple cider pills that I used to ease myself of Zantec. It did wonders, but then I became too sensitive to the malic acid in that. At any rate I don't take anything anymore. I can now handle foods I couldn't eat before without terrible reflux. The only exception is after an accidental glutening. I found that the acid reflux returns if the glutening is bad enough.

I've also read that acid in the stomach is supposed to be a good thing. I helps keep bacteria, viruses, germs in check within the intestinal tract When you block the acid you can wind up with a higher incidence of stomach bugs, common colds etc.

It sounds like you've got actually physical damage from the reflux though. That may be a whole different story and may take even longer to heal?

Violet

  radgirl said:

I've read that many folks have gained weight when moving to a completely gluten-free diet. Are there any that have lost weight after going on a gluten-free diet? For those that gained weight due to the gluten, have you lost any of that weight when switching to gluten free? Where do most people's weight stand without the gluten and in what time frame?

I don't know about most people. I can only tell you about me.

Most importantly I stopped gaining weight when I went gluten free. I'd been steadily gaining weight for a couple years prior to that. I had probably been an active Celiac for 10 years prior to diagnosis.

The bloating also stopped so clothing suddenly fit much better. There are no more skinny or fat days now. After about six months on the gluten-free diet I have slowly begun to loose weight. I looked in the mirror Saturday and realized that I have cheek bones again, LOL. I don't believe it's the diet per say, or any attempt on my part to loose weight that has brought about the weight loss. I don't have the constant hunger I had before when I was eating gluten. I can actually be hungry now without going nuts. If I'm busy I can ignore hunger if I have to. Before hunger was incredibly distracting with an urgency to it that was maddening.

There is some connection there between my body and mind that has brought a more balanced point of view to hunger and eating. I can't explain it really. If I had to guess I'd say it's because my body isn't as desperate for nutrition as it was before when I was eating and not getting enough nutrition out of the food.

violet

  Suffering in Ohio said:

I have searched his website and many others for a list of "normal" gluten free food. What ice cream can I eat, cereal, hamburger helper, popcorn, potatoe chips, etc?

The safest ice cream I've found is Hagan Daaz vanilla or chocolate. The chocolate had a total of either five or six ingedients, no preservatives or flavor enhancers. Ruffles potato chicps have potatoes oil and salt with zero trans fat. Fritos have ground corn corn oil and salt. I look for the shortest simplest ingredient list I can find.

  Momma Goose said:

Thank you for your replies. My symptoms appear to be mild. I will watch it closely and consult with my doctor.

Yes, stress can do a number on you and it's coming at me from all directions.

I appreciate your thoughts and a special thanks to those that PM'd me.

Some of the symptoms you describe sound like my sciatic problems. Sciatica has a tendency to radiate down one side of the body, down one leg, out one arm. Nerve pain is not necessarily the only component of sciatica. Numbness tingling and joint pain can happen as well and you are not necessarily aware that it originates from your spine.

I have also experienced neuropathy and it's been a somewhat different experience for me from the sciatica. At one point just before I was diagnosed with Celiac is was particularly bad. I would get sharp sudden stabbing pains, like a needle being stuck in my. My limbs were most often the targets of that. I also used to fall down periodically and not know why. I'd be walking along and suddenly I was on the ground with no sense of having tripped or even fallen. It is the oddest sensation. I still have trouble knowing where my arms and hands are sometimes, LOL. Again, hard to explain, but it's not uncommon for me to slam an arm into a wall going around corners or into furniture.

violet

You've been at this about a month longer than I have so I can't tell you it gets easier. I do understand however. People don't get it. Even the ones who try don't get it. The diet is a pain. And if you've got additional allergies on top of that your choices just get so restrictive it's not funny. I understand. I'd give anything for one single meal I don't have to cook. But I'm too much of a wuss to risk a restaurant.

What pisses me off the most these days is probably totally irrational, but it's "normal" people talking about the new diet they're on and how hard it is and how they couldn't stop themselves from getting into the drive through at McDonald's. The martyrdom involved in not being able to resist stopping at McDonalds's just annoys the poop out of me. I want to scream at them "At least a Big Mac doesn't make you sick to your stomach and screw your entire body up for over a week." They don't know how lucky they are.

violet

  angel42 said:

Ok, I realize I'm pregnant and maybe it's just the hormones, but I'm really truly depressed. I feel like our lives are so much harder than non-Celiacs. I'm tired of my "friends" turning up their noses when I bring in gluten-free food or mention going to gluten-free restaurants. I just feel like yelling "I have to eat this way all the time! You can't suck it up for one meal! Do you have any idea how lucky you are?"

I just can't seem to get used to this. I was diagnosed in November so it hasn't even been a year. I honestly feel like this is some sort of nightmare I can't manage to wake up from. Now that I am pregnant my diet is even more restricted. The only diet more restrictive than a Celiac diet is a pregnant Celiac diet.

Please someone tell me it gets easier. Thanks for listening.

Irregular period seems to be a known side effect of the drug you're taking Open Original Shared Link

Also the thyroid plays a part in regulating hormone levels in the body. So the more stable the thyroid levels are the more predictable the menstrual cycle is likely to be.

violet

  Lawn Toad said:

I dread to go shopping for food! and so does my wife! Any Idea's of your own food shopping list to share with me and other's that are gluten free with out the extra cost!

Last Shopping trip was expensive. It was a major shop because I hadn't been in a while and the cost of food just keeps going up. Here are the highlights.

Romaine Lettuce

3 bunches Radish

2 Cucumbers

1 Diakon

baby carrots

4italian squash

mushrooms

sugar snap pea pods

apricots

strawberries

lemons

5lb bag potato's

onions

avocados

sour cream

yogurt

cream cheese

milk

18 count eggs

soda water

thai kitchen noodle packets

2 cans tuna

1 london broil

2 whole chickens

half wild salmon

plain frozen chicken wings

plain Jennie O turkey patties

2 bags frozen spinach

bag of frozen sweet cherries

haagan daze chocolate ice cream

large bag shredded cheese

oscar mayer naturals hot dogs

oscar mayer naturals bacon

black olives

green olives

organic ketchup

mayonnaise

5lb bag of rice

diet cf coke

decaf coffee

olive oil

sugar

ground ginger

dried parsley

I don't bother much with gluten-free breads or cereals anymore. I don't care for any of them and they're just too expensive. I'd rather spend that money on a good cut of meat or seafood or grilling veggies. Most of my fiber comes from veggies rice or potatoes and I occasionally make gluten-free muffins with frozen fruits and gluten-free chocolate chip cookies with Pamelas baking mix which is a separate shop at the organic store.

I'm also allergic to corn and sodium nitrate and I'm just feeding me. I usually wind up picking up fresh veggies and milk once a week and limit the big shops for meat and staples to once a month.

Violet

I'm not sure this is in the right place. Moderators feel free to move it if it fits better somewhere else.

I live in the Mountains of Southern California. We're entering the heart of fire season here. I heard sirens a few minutes ago and it prompted me to wonder what I'd do differently if I had to evacuate now as opposed to four years ago before my diagnosis. I have enough family and friends I could stay with down the hill, so a Red Cross center wouldn't be in my future. I can't imagine trying to live in one of those places with Celiacs. But even living with friends for a few days or weeks would be tough.

I'd just really appreciate any out loud thinking here. The usually is obvious, I've got that stuff down; important papers and photos and such. But with reference to Celiac Disease, what could I or should I take? Paper plates and plastic forks are cheap and safe to eat off, but how about pots and pans? Food? Obviously all my vitamins.

I learned from the last time that every thing you replace that you forgot to bring costs you money at a time when you're probably not going to be earning a paycheck. I just can't think at the moment. What should I put on the list to pack?

Violet

Has anyone tried Trader Joe's soups in a carton? A friend was kind enough to pick up a few things she thought were gluten free for me when she went down to the nearest Trader Joes yesterday. While there appears to be no gluten in the soups all the labels say they're made on equipment shared with wheat. This makes me extremely uncomfortable. I appreciate her effort if nothing else. Has anyone else has any experience with Trader Joe's soups?

Why oh why do companies go to all the trouble to make allergen free products and then use possibly contaiminated equipment? It makes no sense.

Violet

On the rare occasions now when I suffer from indigestion or acid reflux, and it's really rare since going off gluten, I take apple cider pills. They work wonders. I doubt they would have stopped the full blown attacks I had before, but now they're all I need.

  tarnalberry said:

propane is not expensive at all. filling up a canister is around $12-$20 depending on where you go. that will grill you up dinner for three months, four times a week, at least. restaurants are *far* more expensive.

Thanks. That probably makes a gas grill cheaper in the long run.

I'm so damn tired of this stupid disease. I just want to be normal.

I grilled last weekend. It made me sick. I grilled last night it made me sick. Now I know why. Between the ash getting on the meat and inhaling the smoke its bound to make a person sick. And of course I buy the cheap store brand match light charcoal. When I bought it the wood charcoal and kingsford were about the same price and the store brand was significantly cheaper. Then there's the question of whether or not the BBQ is too contaminated to continue to use. I've had it for nearly seven years! If I have to buy a new one I might as well buy a gas grill and skip the whole charcoal drama. So how expensive is it to fill up a canister? I can't freaking afford this stupid Disease anymore!!!

I am just so tired of this. I'm tired of paying more for things. I'm tired of not being able to eat in restaurants for fear. I'm tired of being accidentally glutened. I'm tired of calling and emailing before I can buy or eat something because some stupid manufacturer doesn't have the good graces to spell out what "Natural Flavorings" means. All Bubbies pickles by the way are gluten free. Not that you can tell that from the label which lists "Natural Flavors" and "Spices". While I sincerely doubted there was Barley in pickles I had to ask because I'm tired of being sick!

violet

  Mango04 said:

I don't eat beef, so I don't know how I know this, but Applegate Farms and Wellshire both make nitrate-free, gluten-free hot dogs as well.

The problem with Applegate is that I have to make a special trip to the Organic Store, and they will only stock the turkey breast because they've got such limited frig space. Wellshire isn't sold anywhere within an hours drive of me. And they're both more expensive. This is a mainstream supermarket brand that I can eat without paying twice as much and going way out of my way.