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Member Since 16 Feb 2006
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#781027 Do gluten-free Flours Really Need To Be Refrigerated?

Posted by on 16 March 2012 - 05:44 AM

I've never refrigerated my gluten-free flours (which I buy in bulk), and they've been fine.

I do store them in sealed hard plastic food containers (I bought mine at Sam's Club). That keeps creepie-crawlies and humidity out, and they also stack very nicely.
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#780774 What Do You Buy From Costco, Sams?

Posted by on 15 March 2012 - 06:38 AM

We buy Rudi's gluten-free bread at Costco! 2 packages for $7.89--we buy 8 loaves at a time! (4 of us gluten-free in this family!)
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#780772 Could It Be?

Posted by on 15 March 2012 - 06:34 AM

If it were my child, I would take him off gluten immediately. And, in fact, that is exactly what I did do with my children.

If it were a peanut reaction, no way would they make you feed your child peanuts until he reacted enough for them to MAYBE see it in blood work or endoscopy. And gluten-loading for a few days is NOT enough for the test to be accurate--and these tests are notoriously inaccurate in young children, anyway.

If going off gluten is not the answer, you can always go back on gluten and then do further testing. But it's already clear that gluten is involved.

Our medical system is absolutely brilliant in many respects. But in this case, I believe it is completely failing you.
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#761980 I Had Hoped To Never Return To This Place

Posted by on 03 January 2012 - 02:08 PM

It might be worth a shot to get off the prozac. You might feel better if you give it a chance...or not.

Prozac is VERY dangerous stuff. PLEASE don't stop taking it cold turkey! You should wean off very, very slowly, under the care of a doctor.

"Often there is the terrible withdrawal associated with the SSRIs. Unless patients are warned to come very slowly off these drugs by shaving minuscule amounts off their pills each day, as opposed to cutting them in half or taking a pill every other day, they can go into terrible withdrawal which is generally delayed several months. This withdrawal includes bouts of overwhelming depression, terrible insomnia and fatigue, and can include life-threatening physical effects, psychosis, or violent outbursts."

There are some support forums for people undergoing Prozac withdrawal:

You probably don't want to read the info I found showing that the manufacturer lied about Prozac's benefits/risks before getting it approved...
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#761945 I Had Hoped To Never Return To This Place

Posted by on 03 January 2012 - 12:43 PM

It actually doesn't make a whole lot of difference if it's shingles or DH.

Either way, gluten is setting off an autoimmune reaction.

If it really is shingles, antivirals will help.

Shingles tend to be terribly and unrelentingly painful, with some itch as well; DH tends to be unbearably and unrelentingly itchy, with just a bit of pain. I've had them both, and the blisters look practically identical.

Shingles follow one nerve pathway, exactly. DH is usually perfectly symmetrical.

Taking a supplement of L-Lysine will help inactivate the herpes virus (shingles is herpes zoster, the same virus as chicken pox). That's actually how veterinarians treat animals with herpes infections.

HOWEVER, if you are eating gluten, you won't absorb the L-Lysine, antivirals or pretty much any other medication they give you. You are also not absorbing nutrients from your food, or your multivitamins (if you take any).

I don't mean to sound harsh. I have been where you are (as have most of us here), and I know how very, very tough it is for you right now, both physically and emotionally.

But you seem to be out of choices. L-lysine won't help DH. The only thing that cures DH is to go off gluten. The only way you can absorb meds for shingles is to go off gluten.


If there's some kind of food you can't bear to give up--tell us what it is, and you'll be bombarded by different recipes for it. There are gluten-free flour mixes out there that can be subbed cup-for-cup for regular flour in whatever recipe you want--with very, very little difference in flavor or texture.

The only thing you will be giving up (besides for your illness) is a little convenience--and gluten-free is becoming more and more convenient every day.

Can you look your children in the eye, and tell them that the convenience of gluten foods is more important to you than being alive for them 10 years from now? For most of us, the mortality rate associated with celiac is this vague chance that is somewhat higher than the mortality rate for "normal" people. We have a higher chance of developing stomach cancer, lymphoma, and diseases like MS and lupus. For you, it's a heckuva lot more immediate. You have already crossed over into fatal disease territory. You have Primary Sclerosing Cholangitis, which is associated with celiac disease, and is apparently cured by a gluten-free diet. You're really going to choose gluten foods and a liver translplant over a cheap, easy lifelong cure? You're really going to put your children in the position of wondering if someone has to die to donate a liver to their mother? And to wonder if she'll then survive the surgery?

Come on.

One more point--are you aware that for susceptible individuals (like you, me, and everyone else here), GLUTEN HAS AN OPOID EFFECT ON THE BRAIN? Gluten is literally addictive.

Just so you know I'm not making this up, here:
"The peptides from gluten and casein can react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine. These compounds, called neuropeptides, have been shown to react with areas of the brain's temporal lobes that are involved in speech and auditory integration. Neuropeptides also decrease the ability to feel pain and effect cognitive function."

Can you see that the gluten you've been eating might be clouding your ability to think straight here about gluten, just the way someone on heroin cannot conceive of giving up heroin?

Hang in there, let us know how we can help you, and please keep us posted, okay? And think about what I've posted. Every time you look in your children's eyes.
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#761835 I Had Hoped To Never Return To This Place

Posted by on 03 January 2012 - 05:22 AM

You mention that you have children. I was wondering how old they are? And if they might be at risk of having either celiac or gluten intolerance themselves? The predisposition IS hereditary; while your celiac was apparently triggered in adulthood, theirs might be triggered earlier. Vaccines are a common trigger of autoimmune disorders. Adults are receiving far more vaccines than ever before, and the number of required pediatric vaccines has tripled since most of us were children. So if they have frequent tummy aches, migraines, and/or rashes,

I also wonder if you've tried to make gluten-free versions of the foods you love.

Dinner rolls, for example. The pre-made rolls sold in the grocery stores taste awful--like styrofoam.

But homemade ones taste like...homemade rolls. And they're not hard to make at all. I will be happy to send you reams of easy-to-make, good-tasting recipes for anything you want.

I cried for 2 days when I was diagnosed. Then I started hunting for recipes.

I told DH and our 3 children that from now on, breakfasts and dinners would be 100% gluten-free. I couldn't deal with a "mixed" kitchen. They could have their own bread, but everything else--from pancakes to dinner main courses to soups to desserts --was going to be gluten-free.

Not only did they not complain, but they scarfed down everything. Since I had not previously cooked much from scratch, apparently, everything tasted BETTER now.

I was VERY surprised to notice that the kids' occasional tummyaches and rashes miraculously improved. Turns out, they all have either celiac or gluten intolerance as well. So they are now 100% gluten-free, and rashes and tummyaches are totally gone.

When the kids go to a party where pizza and cake is served, I make gluten-free pizzas (very easy) and a 3-minute, microwave mug cake with frosting to send with them. They have never complained, and their friends' parents report that they have always turned down gluten, and asked to see labels of things like chips.

I told them not to feel bad if they saw something that looked amazing that they couldn't have, because whatever it was, I would promise to make it for them, gluten-free, within a week.

We tested the middle kid (the one who had the most severe rash) in particular by going back and forth with the gluten-free diet. The first time we put him back on gluten, he got diarrhea and the rash came back, but we thought maybe it was coincidence. So we tried again a few weeks later. Same thing, but more severe. He sat on the toilet and sobbed that he was NEVER going to eat gluten again. And he hasn't.

He was 7 years old. It's been 6 years, and he hasn't cheated once.

So, I have one last question for you relating to your kids, and this is the most important one. I'm sure that you are aware gluten is a major factor in many autoimmune disorders, and may likely be involved with your liver disorder. In fact, a quick search on PubMed reveals SEVERAL studies linking your liver disease to celiac.

"Celiac disease in patients with severe liver disease: gluten-free diet may reverse hepatic failure."

"The liver damage in celiac disease ranges from mild hepatic abnormalities to severe liver disease and may be seen in 15-55% of patients. The mechanisms underlying liver abnormalities in celiac disease are not defined clearly. However, consumption of a GFD is an effective treatment for most patients with celiac disease and liver disorders."


How much do you love your kids? Do you love the convenience of gluten-free food more than the idea of being here for your children in 10-12 years?
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#730729 8 Year Old Sneaking Food With Gluten In It!

Posted by on 15 September 2011 - 11:42 AM

First of all, I think that the cravings effect of gluten is extremely strong, and takes weeks of 100% gluten-free to go away, even for an adult.

Secondly, I agree that at this point, you should not be calling gluten-eaters "normal." It just makes your daughter feel like she's NOT normal, and that there is something WRONG with her. She doesn't need that!

I would never have managed to keep just myself gluten-free without making the household gluten-free.

Basically, I told my family that I would promise to make everything taste good, but that I was NOT going to cook two sets of breakfasts and dinners. If they wanted cookies, cakes, etc., they would either have to eat them out, or eat them gluten-free (home-made gluten-free, which is a far cry from the styrofoam premade gluten-free foods). They had their own bread for lunch-time sandwiches, but everything else was gluten-free.

And amazingly, the occasional (once or twice a week) stomach-aches disappeared, the bed-wetting stopped, and rashes disappeared.

We now believe that all the kids are gluten-intolerant (or perhaps even officially celiac, but we couldn't care less about the official diagnosis). They are all 100% gluten-free, and it really was not hard. But I'm sure it would have been if I had not promised them that I would make a gluten-free version of whatever they were craving, from pizza to cake to cookies to turnovers to pie to bread.

And like above posters, we also have much more in the way of fresh fruits and veggies than we ever did before. We eat very little processed, pre-fab food, and I think we are healthier for it.

That may sound like it takes a lot of time, but it's not nearly as much as I thought it would be. Making things from scratch takes 10-20 minutes more prep-time than shoving something in the microwave or shoving chicken nuggets in the stove. Making bread takes 10 minutes of prep time, and then you dump it in the breadmaker and walk away for 90 minutes.

I have 3 kids and a full-time job, so if I can make it work, I think anybody who wants to can make it work. But a "split" household? I honestly think that's just asking for trouble. I know some people make it work, but with a child of 8,that would be terribly difficult and would likely have some emotional repercussions for the child. Letting the child feel free to eat anything in their own home seems a lot healthier to me.
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#723898 My Sisters Test And Lack Of Symptoms

Posted by on 18 August 2011 - 07:12 PM

Ok here is the deal my sister is a type 1 diabetic she had some blood test done a few weeks ago the were routine test she wasnt having any problems. I am pretty worried because a week ago my sisters nurse called and said that my sister was going to have a biopsy when we asked why she said she tested positive for celiac it was a shock to all of us because we had no idea and more importantly my sister has NO symptoms.

She got the biopsy done today and when i asked the doctor what her blood test results were he simply said she was 25. 25 what anti bodies? He said the average person is suppose to have less then 1. I was so confused and worried that I didnt have time to think everything was going so fast.

The doctor was confused because he said "your people never get ceiliac disease" I guess somalis or africans in general don't get celiac as much. Also NO one in our immediate family has celiac or has any of the symptoms.

Regardless my sister has no symptoms 95% of what we eat has wheat in it or gluten. We eat pasta on a regular basis probably 3 times a week if not more. I would imagine someone who is positive would get sick after eating gluten. I constantly ask if she has any stomach problems and she says no she hasn't changed her diet at all and she feels perfectly fine she's tall and she's normal weight.

After the biopsy the doctor said that everything looked "great" what the hell does that mean? its just hard because my sister already has diabetes an I've seen how much she has struggled with it and adding celiac would just make things harder.

Has anyone been diagnosed with celiac diesese that didnt have any symptoms? Also what are the normal levels of anti bodies?

Hi, Worried bro, your sister is lucky to have such a caring brother!

The normal level of antibodies varies from lab to lab, as each lab can set their own reference range, but in general, healthy people do NOT produce antibodies to gluten, nor gluten-triggered antibodies to their own bodies, which is what the celiac blood tests test for.

The biopsy has been considered the "gold standard" of diagnosing celiac for the past 50 years or so, because celiac disease is actually defined by the kind of intestinal damage that biopsies look for. However, since celiac was originally defined, the blood work has become much more sophisticated, and is now thought of as more sensitive and accurate than the traditional biopsy. Still, most doctors rigidly adhere to the practice of only diagnosing celiac after a positive biopsy.

I don't know about Somalis /Africans, but I do know that Asians who have lived in the West, and adopted the typical Western (gluten-filled) diet have a celiac rate that pretty much equals that of Europeans and Americans--after only 1 or 2 generations! (Celiac disease is practically unheard of in Asian countries.)

There may be many reasons for this; the most obvious reason, of course, is that the American/European diet is SO gluten-heavy. Every meal not only contains gluten, but is heavily gluten-based.

It is certainly possible that your sister could have celiac disease and have no symptoms. This is called "silent" or "latent" celiac disease.

It is also possible that there was an error with her blood work. However, I think that the fact that she has type 1 diabetes is a red flag that she is at risk for celiac, because type 1 diabetics IS linked with celiac. I know my endocrinologist routinely tests ALL her diabetic and thyroid patients for celiac, because she sees them together so often.

Again, this is complicated. It doesn't necessarily mean that one causes the other. I think it's more likely that they share some genetic predisposition, and/or they may have the same environmental triggers.

Many diabetics do report that their diabetes is much easier to manage if they stop eating gluten. Certainly, diabetics are usually counseled to follow a low-carb diet, but for some, it's not the carbs that are the problem, it's the gluten.
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#586884 We'Ll All Be Eating Gluten In About 15 Minutes...Sorry

Posted by on 15 January 2010 - 08:04 PM

I totally understand how you feel. I also agree with the other posters.You have every right to be frustrated at the ignorance and insensitivity of friends and family. But there's a better role for you to play in this scenario than that of the helpless injured heroine. You can be much more proactive here! But that's difficult when you can't see all the possibilities. We may be able to help you here by cluing you in to EASILY AVAILABLE ways to make typically gluteny foods gluten-free.

For example, you can make gluten-free chicken nuggets cheaply from scratch by buying raw chicken tenders, dredging them in cornstarch, dipping them in beaten egg, rolling them in seasoned corn meal or potato buds, and then frying them. Or you can bake them if you spray them with PAM or drizzle with butter or oil. Either way, start to finish only takes 30 minutes.

You can keep corn tortillas on hand as emergency gluten-free pizza crusts. The best way to prepare these is to brown them on each side in a little olive oil, then make a "sandwich" out of two of them with a slice of provolone. Put on a greased cookie sheet, top with your favorite sauce and toppings, and broil for 2-4 minutes. Voila--pizza.

I've fed these to a bunch of pre-teen boys (all gluten eaters except for my son) and they scarfed them down and hollered for more.

At home, you might discuss with your hubby the possibility of changing your assigned chores so that you do the bulk of the cooking. That way, you can make EVERYTHING gluten-free except for the bread for their sandwiches--just make sure that you make it taste good! And there are gluten-free recipes for everything under the sun (including bread, pancakes, cookies, cakes, pizza crust, pasta dishes, etc).

Forget the specialty items except for gluten-free flour and pasta. All the rest is overpriced and totally unnecessary, and usually tastes like cardboard. Make everything from scratch--it's cheaper, healthier, tastier, and doesn't have to take longer than getting take-out! Look up Rachael Ray's cookbooks--almost all of her recipes are easily adaptable to gluten-free, and most of her cookbooks contain a "Make Your Own Take-Out" section--and ALL of her meals are 30 minutes or less.

You don't need to go shopping anywhere. A-M-A-Z-O-N dot com will deliver all kinds of gluten-free pastas and flours to your door. Everything else you get at your regular grocery store because it's NORMAL food--fresh fruit, fresh or frozen veggies, salad stuff, raw meat, fish, chicken, etc.

I buy betterbatter flour 45 pounds at a time. It comes in convenient 5-pound boxes, and I use it like regular flour, except in recipes for things like bread. Their website has fantastic recipes for all kinds of things--check it out. www.betterbatter.org. I make bread in the bread machine 2-3 times a week, I make pizza crust from scratch, muffins, birthday cake, cookies, pancakes, etc from that gluten-free flour mix.

I started out cooking for our family of 5 with me being the only gluten-free one. Now 4 of us are gluten-free. I also have a full-time job. If I can do it, anybody can!

Perhaps that is the biggest value of forums like this one and others. You are not the first person to blaze this trail. Others have figured out the ins and outs (thank heavens!), are willing to share experience and recipes.

Good luck, and please keep us posted--let us know how things work out for you, okay?
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#566923 B12 Supplement vs ADHD Medication?

Posted by on 08 October 2009 - 10:12 AM

Symptoms of B12 deficiency include:

hearing loss

In this country, they tell you your B12 serum levels are fine if above 200. Japan has a lower limit, however, of 650, and treats anything under that. Japan also has the lowest rate of Alzheimer's (also linked with B12 deficiency) in the developed world.

Some things that might put you at high risk for B12 deficiency:

Vegan diet
Diet with no red meat
long-term use of acid blockers like Prilosec
malnutrition/leaky gut (hello, Celiacs!)
intrinsic factor deficiency (which does NOT show up on standard B12 tests, so you may have decent serum levels, but your body may be unable to properly process the B12 in your system).

For more information, you can check out www dot pernicious-anaemiasociety dot org.

As for ADD/ADHD meds, the only thing I've seen that was compelling was a book (I can't remember the name!) by a psychiatrist who used PET scans of the brain to determine which area of which lobe wasn't working correctly, and was able to then prescribe the appropriate medication based on that information. Most doctors, though, simply guess, and it's hit or miss. They also seem to say, over and over, that they don't know WHY stimulants help ADD/ADHD.

It's also important to realize that ADD/ADHD is currently considered to be part of the autism spectrum. A large percentage of autistic children have issues with both gluten and casein, vitamin deficiencies (even on a Gluten-free Casein-free diet), and have other issues as well, such as mitochondrial dysfunction.

The blood sugar issue is a good point. My 14-year-old, who is not the least bit fat, discovered on his own that he is a total space case all afternoon at school if he has gluten-free sandwiches and fruit juice for lunch, but is fine if he has salad. He was diagnosed with Autism at age 3, but lost the diagnosis at school. He is also gluten-free.
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#564137 Us Produced Malto Dextrin Is No Longer Safe

Posted by on 24 September 2009 - 05:27 AM

I think that it's possible that some of us here are simply sensitive to maltodextrin in a way that might have nothing directly to do with gluten.

I don't have terrible, immediate reactions to gluten. My reactions to maltodextrin are quite similar, but much STRONGER than my reactions to gluten.
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#503199 "Super Sensitive" Celiacs.....

Posted by on 18 January 2009 - 12:53 PM

I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong.

I think you are absolutely correct.

I also think that many of us (myself included) owe those of you who are extremely sensitive a HUGE thank-you.

If you, ravenwoodglass, and many of the others had not posted about your experiences, I would never have known enough to go gluten-free in the first place. Because of your experiences, I didn't wait for a doctor's permission, or for a "gold-standard" diagnosis. Your wisdom-by-experience allowed me to put 2 and 2 together BEFORE I suffered more than minimal damage.

And the continued health problems and multiple autoimmune disorders that plague many of you are what motivate me to STAY gluten-free. You put real-life faces on the risks associated with continued gluten ingestion.

So, for myself, and on behalf of the Newbies-to-come, THANK YOU for sharing what you have learned.
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#485697 Us Produced Malto Dextrin Is No Longer Safe

Posted by on 17 November 2008 - 04:48 AM

I do see European brands of chocolate list "glucose syrup (from wheat)"--I assume (perhaps wrongly?) that there are celiacs who would react to that, even if it is supposed to be free from gluten.

They do say the same thing about wheat starch--that it is supposed to be gluten-free due to the processing, and in Europe, it is considered safe for celiacs, but aren't there celiacs who DO react to it, thereby indicating that it's not quite as gluten-free as they would like to think?
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#292619 Shingles (zoster) And The Immune System

Posted by on 18 April 2007 - 10:11 AM

You said something about laughing - thanks Fiddle-Faddle. A little comic relief goes a long way, even if it's only funny to me.

In that case, check this out:
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#136421 Vision

Posted by on 07 May 2006 - 04:27 AM

. I don't shut one eye anymore when reading at night!

Hope this gives you some ideas to try,

That's fascinating, DonnaD! I have ALWAYS shut one eye when reading--but I never connected it to gluten before. I did all sorts of eye exercises (for either strabismus or ambliyopia, depending on which doctor you believed) as a child, but they never worked. Come to think of it, I haven't had time to read much lately--I'll have to check it out now that I'm off gluten!
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