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elfie

Member Since 30 Nov 2010
Offline Last Active Private
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#759223 What's The Best And Worst About Being Super-Sensitive?

Posted by elfie on 22 December 2011 - 07:03 PM

I think anyone who is sensitive can go out to eat successfully because there are restaurants who can produce a truly gluten-free meal. I have found that it's basically the more upscale restaurants that you have success with. They have more education and knowledge. It's also prudent to complain so they know all the ins and outs of preparing gluten-free food. This is how celiacs can make their lives more mainstream and be able to go out to eat occasionally.

I don't go out often but have had pretty good success with it. I am very sensitive and have to be extremely careful but have found it can work. You just cannot go out too often....limit the risk. The other issue is that some areas just do not offer much in the way of gluten-free eating. It is not fair but it's reality. To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources.


I have to respectfully disagree with "anyone who is sensitive can go out to eat..." I have eaten at the restaurants that tout gluten free menus that many celiacs of whatever sensitivities recommend and each time I've been glutened. Before anyone says it's another food intolerance, sorry, nope, I know all my food intolerances and everything but gluten is easy to avoid. I don't like having the "flu" for 3 days and fatigue for a week by trying out these places. I expected to be perfectly fine, so it wasn't a matter of me convincing myself I'd be sick either, for any that would suggest that.

I do find this: "To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources." to be a broad negative generalization of people whose experiences don't agree with your own.

I agree with GFM that people who have more visible sensitive reactions are harrassed in this forum, which is why I rarely post though I've been reading for a long time.

This is what I find is the hardest to deal with as a super sensitive--the fact that other celiacs of whatever sensitivities invalidate my experiences just like so many doctors and "regular" people invalidate celiac with "it's just in your head." It's about like what the Puritans who came to America to escape religious persecution did to the Native Americans because they didn't hold the same beliefs.

The best thing I find about having become super sensitive is that I get reactions so that I can work to eliminate the culprits and continue to improve my health after having been misdiagnosed for over 20 years and losing all that time.
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#752584 Labeled gluten-free But Really Not

Posted by elfie on 01 December 2011 - 08:37 AM

Given, the information contained herein is for those with celiac who have super sensitive reactions. This is the super sensitive section and does not apply to everyone. The information I seek to verify with reputable references will help me and other super sensitives make better educated choices as to which products we may cautiously add to our lives rather than having to be concerned over most every choice we make. It is not paranoia but a wish to educate ourselves to get/stay healthy and continue to expand our lives. I have no doubt whatsoever that I had a gluten reaction to that aspirin because after it was removed my gluten reaction was removed as well. I have no problem with other medications I have that contain aspirin, as I mentioned already so it's not like there isn't the possibility of a safe source.

Thank you for the link; however, it did not provide in itself or its references what I would consider a reputable source.

While the "volunteer" (yes, the "authors" are "volunteers") who provided this information http://en.wikipedia....ki/Maltodextrin on Wiki is either knowledgeable or good at copying and pasting information, I couldn't go in to see anything about the author or what her other 548 posts were because clicking on the author brought up a donation seeking page. Also there are at least 500 revisions of this particular page that can be found if you click the view history tab---any information on Wiki is only as good as the references used. In our school system Wiki is not an acceptable reference for any research papers due to how Wiki content is provided.

Just to give it a fair shot I went in and read the references provided---none of which were FDA or scientific inquiries directly related to gluten and it's regulation.

From:
http://glutenfreeliv...om/labeling.php

"A food label should contain all the information you need to figure out if that food is safe on the gluten-free diet.

You need to avoid:

Wheat
The Food Allergen and Consumer Protection Act says labels have to list the top eight allergens, including wheat, in plain English whenever they are an ingredient in packaged foods regulated by the FDA."

This specifies packaged foods and doesn't mention drugs?!? And if as quoted below, something is highly processed and rendered gluten free, do they have to label it/do the companies understand that? I can't find any information on that anywhere.


http://glutenfreeliv...om/labeling.php
"Advisory labels
In addition to the ingredients list, you may find advisory labels on a food package. Advisory labels are not regulated and companies use them voluntarily. They give consumers more information about the possibility that a food could be cross-contaminated by an allergen during processing."

So, according to this source, advisory labels are voluntary and not regulated.

http://glutenfreeliv...hp#maltodextrin

"Maltodextrin
Maltodextrin is gluten free. It can be made from a variety of starches, including corn, potato, rice or wheat. However the source does not matter because maltodextrin is such a highly processed ingredient that the protein is removed, rendering it gluten free. If wheat is used to make maltodextrin, "wheat" will be appear on the label. Even in this case, the maltodextrin would be gluten free."

Same source, with no references provided, asserting that "wheat" will appear on the label and even if wheat is used it's so highly processed that it is "rendered gluten free."

The other link that had anything other than a definition of maltodextrin, http://www.sugar.org...ml#maltodextrin does say: "Additionally, today's commercially important maltodextrin products are produced from corn, potato or rice. Unlike the other starch sweeteners, the undefined term "maltodextrin" can be used in an ingredient list no matter the original source of starch."

Again though, there is no FDA or scientific reference cited. And it says "the undefined term ""maltodextrin"" can be used in an ingredient list no matter the original source of the starch." So this one disagrees with the other one.

So back on the Wiki page: "In the US, this starch is usually corn." It says USUALLY and no references are cited.

On this same Wiki page:
"It is recommended that celiacs or patients with severe intolerance to gluten continue to avoid food with maltodextrin."

Barley and Rye could be players here according to the mention of "cross-contaminated by an allergen during processing." in the advisory label quote above since WBR are all to be avoided by those with celiac and they may be in the same facility since the advisory labeling is still voluntary.

I was going to ask for a link to the law, but then decided to go searching for myself. It's actually the Food Allergen Labeling and Consumer Protection Act of 2004.

SEC. 206. GLUTEN LABELING.

Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services, in consultation with appropriate experts and stakeholders, shall issue a proposed rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods. Not later than 4 years after the date of enactment of this Act, the Secretary shall issue a final rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods.

It's almost 2012 and yet this Act is not really in effect yet as it was supposed to be. Here's a link with information and a link to the FDA Federal Register Notice from 2011: http://www.glutenfre...eling-of-foods/ The proposed limits for "gluten free" labeling are 20ppm which may be fine for some or many with celiac but is definitely not fine for those of us who are super sensitive.

There's more interesting reading here: http://www.fda.gov/F...n/ucm106042.htm with an Industry Association Rep stating: "Incidental additives such as processing aids (soy lecithin) that result in inconsequential levels of protein from major allergens should not require labeling." and the response to that was: "While soy lecithin is discussed with the report, this specific issue is outside the scope of this report. FALCPA includes procedures for obtaining an exemption from labeling where certain conditions are satisfied.

A Health Professional stated: "Reading food labels are part of a life-and-death decision for the food-allergic consumer. Precautionary labeling - "may contain," "processed on the same line" - forces families and patients to contact the manufacturers to try to gauge the risk. Most families decide on zero tolerance, limiting dietary choices. We know that severity of reaction and the dose required to elicit reactions varies from person to person. If thresholds are established, health care professionals need to know what to tell patients. If food-allergic consumers lose faith in the integrity of the labels, they will be left with a practice called "trial and error." " The response was: "Labeling issues are outside the scope of this report, as are issues about outreach and education should any threshold be established."

So basically, what I'm coming up with from reading all this is that unlike with peanut allergy, people with celiac who are super sensitive or react to under the 20ppm that the US industry is pushing, even though other countries have testing and lower limits, need to be aware that at this point 20ppm is "gluten free" and that is too much for us.

So, in the end I found a reputable source I was looking for. I thought others who are super sensitive would benefit from my sharing what I found here since this thread is about "labeled gluten-free but really not."
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#750572 Sad For The Child But Not Much I Can Do

Posted by elfie on 25 November 2011 - 03:04 AM

Oh, and Shauna, I had to laugh (I needed it too) about educating the doctor. I can't even educate my GP and he's relatively fresh out of medical school. I've been with him since his internship about 7 years ago.

For those wondering, he's the best of the bunch of doctors I've been to in the past 20 years, sorry to say. At least he doesn't treat me like everything is all in my head. I won't bore you with my experiences with the different specialists and such I've seen, too many of you have had similar experiences.

Thanks!
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#750571 Sad For The Child But Not Much I Can Do

Posted by elfie on 25 November 2011 - 02:55 AM

Thanks everyone, I wish it were just about politeness because I have no problem overcoming it when necessary. I don't even know the parents or their names so there's no way to even get to them directly or I would try. My SIL works for doctors and is one who thinks their opinions are, well, you know how it goes. I only see her once or twice a year and don't even have her phone number.

My relationship with my husband is shaky at best and he rarely thinks my gluten issues are anything more than in my head. I'm glad I shared because, even though it may do no good, I've been in debate about asking him for SIL's number so I could talk with her privately.

When I shared with her about my gluten issues in the past, she was of the school that if you don't eat bread, crackers, etc. it'll be fine. You know the kind, if you don't eat the crust the pie is ok. Just pull the croutons off the salad and so on.

Even though I have gluten issues I don't have issues with oats (medical testing to back it up), yet I've had issues since I was a kid with what she said he was eating with no trouble. Other than what I've shared here I have no information on how the doctors reached the opinion that he's outgrown it.

Yes, I'm going to try to get her number so I can talk to her on a day when I'm not the outsider at a family function. I'll at least give her the information I have and a couple of links if she'll take it. It kind of feels like the starving kids in the world---I know it's going on but I'm in no position to make a difference.

Thanks again. I needed to get it off my chest somewhere where I knew I'd get support. I'll do the best I can.
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#750213 What The Heck Got Me

Posted by elfie on 23 November 2011 - 02:43 PM

Thank you for the responses and link to McCormick's where they make that statement. I imagine most people do research to form their opinions.

It's too bad McCormick's doesn't back up their answer with information on the testing they do to substantiate their claims. Having grown up around farming there's just too many different farming practices for me to agree 100% with their claim without it being backed up with testing. The information hasn't been scientifically proven. I will agree that the spices themselves are naturally gluten free, but if a company is going to call something gluten free I would expect them to actually have testing done to back it up.
Gluten free is getting to be too big of a business and there's still not any kind of standard for labeling.

Thanks again. :)
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#748699 Newly Diagnosed

Posted by elfie on 18 November 2011 - 09:26 AM

Booghead, welcome to our world, sorry you had to join us, but you are not alone. I know how hard it is when you are in a gluten household that isn't very supportive. I also know how economic hardship can make it even harder as I'm low-income and in a similar situation to your parents in not really being able to afford my home, etc.

If it weren't for gluten issues then thrift stores would be good places to get stuff. We need to avoid contaminated cookware so they aren't an option. I've found that odd lots, big lots and dollar-type stores are good places to find a lot of the things we need for cheap. I don't know if you have those in your area but there should be something similar.

I've recently been thinking about cookware because in 2 years my daughter will hopefully be going away to college and she'll need her own. You don't really need a lot of things to start off with if you start simple with whole foods and don't spend a lot of time trying to replace the traditional gluten items like bread.

What I came up with as basic cookware starters were a skillet, a lidded saucepan, and a pancake turner (spatula) and maybe a serving spoon. With shopping at the stores I mentioned they would add up to around $25. If you need to spread that out over time I'd start with the skillet and spatula---bout $11 to get both.

With the glass baking pans, really good cleaning before using would make them usable. If you have corel-type plates and glass glasses then the same would hold true for them. If they are plastic or scratched up stoneware then they would be a risk. If it's possible, have your own plate, bowl, glass, etc. from the household kept separate, along with your basic cookware. Some people use a rubbermaid type container to hold their dedicated gluten-free stuff away from the regular household stuff in order to reduce the risk of getting contaminated. Unfortunately, you need to make sure to wash your things separate from those with gluten on them.

If you were to try the gluten-free pastas there are ways around having a strainer until it's possible to get one. I've used the lid of a saucepan to hold back pasta (even before gluten-free) while pouring out the water.

If there is a shelf in the cupboards away from the gluteny stuff that you could store your stuff in that would be great. If not, you can store your gluten-free stuff in the container. If there's a way to get a section of the top shelf in the fridge to keep your gluten-free stuff that would be a help as well.

For most of the meals I make I don't use more than what I listed above.

Anyhow, that's a start. I know there's more to learn about this but I wanted to give you an idea of the basics of cookware for now. There is all kinds of good information that you will find in this forum.

Oh, and wax paper to cover anything you might heat in the microwave. As an example, if you poke a potato a couple times with a fork and wrap it in wax paper, set it on a safe dish and bake it in microwave for about 5 minutes (time will vary with size of potato and power of microwave) then you have a baked potato or the start of a loaded baked potato---add toppings of your choice.

Good luck to you and don't give up. If I'd have known about my gluten issues at your age I probably wouldn't have lost years of living my life well to fibromyalgia and neuropathy. Now that I know about it I'm slowly healing from the damage and feeling so much better.
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#748348 Just Glutened Myself Alot On Purspose To Identify Reactions

Posted by elfie on 17 November 2011 - 08:10 AM

Lovesaceliac, the OP ended up having a later reaction. It's on page 2 of this thread. For me, since I was just told I had gluten intolerance as a teenager and not what it meant I went back to eating wheat after a while because my symptoms didn't improve (Nobody said do without for at least 90 days or anything and they didn't bother to check me for celiac) so I spent my life in a poor state of health that got worse after 40+/- years. Got diagnosed with fibromyalgia and peripheral neuropathy and "slight" RA in my 40s and put out to pasture. Because of allergy/intolerance testing that was done in my late 30s where I again tested gluten intolerant I decided to go gluten free to see if it would help me because of my research on fibromyalgia. I just couldn't live with the idea that I was going to stay in worse condition than the folks in the old folks home at this age. I have a teenager that needs me to be functional enough to be a mom.

Now that I'm older and have read enough of the medical papers to understand things better I would advise anyone who has been diagnosed as gluten intolerant or celiac to "not try this at home." The scientists still don't have a clear enough handle on it all to say why we might react differently with different exposures. I wouldn't wish my health on anyone, though, as it gets better that may change. :)

I "know" better, but had to prove it to myself, just like others may feel the need. It's really not worth it because if you don't see a clear reaction you may end up where I am. I figured they've decided I'm broken (permanently disabled) and can't be fixed so I may as well guinea pig myself because my teenager shows clear signs of having the same issues and I don't want the same kind of life for her.

Like I said in my previous post, the reactions to major doses of gluten may take longer to show because there's more "invaders" for the body to attack before it starts attacking itself---and the reactions may or may not be clearly noticeable. My reactions as a teenager were written off as teenage angst, laziness, and mental issues. Other than I'm still trying to get my energy up and my pain level further down now, without gluten I don't have any of the mood issues. I accidentally get glutened and I get the mood/irritability issues back.

Basically, I and others who suffered for years without knowing why are examples of what can happen to someone diagnosed with gluten intolerance and/or celiac who continues to eat it. Some people start to feel better immediately when they go off gluten and for others it takes a while longer. Reactions to it can change over time---I didn't have clear GI symptoms for all those years otherwise one of the many docs may have bothered to check me for celiac instead of considering me a head case.

So, if you can, let the examples and self-tests of others serve as your indicators rather than putting yourself through it. It just ain't worth it. Even I know that now. LOL

Good luck to you all! Better health through diet is an option with this stuff!!!!
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